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colon header 2Like me, you may have been born with this and not even know it!  If you were, chances are you will find out one day!

That diagnosis became my reality.   My story began last December when I experienced something, a medical emergency, which even though I had worked in the medical field for several years I had never heard of.  No one else that I spoke to about it had heard of it either.  When it happened to me I searched the web for others that might have experienced this same diagnosis, but found few.  So I have decided to write about my experience to hopefully provide information to someone else that might have to deal with this.

My experience began one evening after eating dinner.  Approximately 30 minutes after eating I began experiencing severe abdominal cramping.  This lasted for about 45 minutes and then subsided so I didn’t worry about it or give it another thought.  Two weeks later however, it happened again.  About 30 minutes after eating dinner I began having severe abdominal cramping, but this time it didn’t stop.  It continued throughout the night, I became nauseated and vomited, I felt hot and shaky and like I was going to pass out.  At about 5:00 in the morning I started passing blood.  I knew then that something was seriously wrong!  I called my husband at work and asked him to come home and take me to the emergency room.

On arriving at the ER, they placed me in a room fairly quickly.  They gave me something for the nausea and ordered labs and a CT scan without contrast.  The labs came back with nothing concerning. They told me the CT scan did not show anything out of the ordinary.  So they basically told me they hadn’t found anything significant, gave me IV fluids, a prescription for Phenergan for nausea, told me to follow up with my primary care doctor and sent me on my way.

I still felt bad the next day so I called my primary and she saw me that day.  I explained the situation to her and she referred me to a gastroenterologist.  I scheduled an appointment with him for the following week.  In the meantime, I began feeling better so my concern drifted away.  I saw the gastroenterologist and he suggested a colonoscopy which I agreed to.

I had a previous colonoscopy when I was 52 and it was a breeze.  No problems with the prep or the procedure.  This experience was completely different.  When I started drinking the prep I became extremely ill.  I vomited a number of times, but continued to try and drink the prep, keeping down as much of it as I could.

I went for the colonoscopy the following day as scheduled.  When I woke up from the procedure I was so sick; I was in pain and had uncontrollable shivering.  When the gastroenterologist came to see me with the results he told me that I had a “mobile cecum” meaning it was not tacked down to the abdominal wall, allowing it to float around or twist.  He said my cecum was currently lying in the upper right side of my abdomen.  He expressed frustration that this was not caught when I had the CT scan, stating that he had called the radiologist and said “you mean you didn’t see this?”  He was completely caught off guard when he had done the colonoscopy.

Colon Anatomy

Colon Anatomy

He went on to state that the cecum was ischemic, meaning it had gone without blood supply and did not look good at all.  Because of its poor condition he said he “wasn’t about to touch it” and hadn’t taken any biopsies from it.  He did take biopsies from several other areas where he saw ulcerations to find out if I also had colitis.  He stated my cecum and ascending colon had probably twisted because of being mobile and thus the bout of severe pain and vomiting with diminished blood flow.  I was discharged to home with instructions to schedule a follow-up appointment with him.

My husband drove me home and I went straight to bed.  I was sick.  I kept saying “something’s not right”.  Having had a colonoscopy before, I knew this was much different.  Of course, being stubborn, I suffered throughout the rest of the day and night and finally when still in pain went back to the ER the next morning.  This time they did a CT with contrast which revealed a greatly distended cecum probably caused by a “cecal bascule or volvulus”, meaning my cecum had either folded upward or twisted on itself.

The emergency room doctor consulted with a surgeon and the surgeon wanted me to be admitted to the hospital.  My cecum was so distended that it was at risk of rupturing, which could have been fatal.  He explained to me that he would rather admit me and watch it closely for now rather than do an emergency surgery under these circumstances.  It would hopefully reduce in size and then a scheduled, instead of emergency surgery could be done the following month.

I was admitted on a Thursday evening with Christmas only one week away.  Scans were performed every morning to make sure my cecum was not becoming any more distended.  My pain subsided, my cecum became less distended and I was released on the following Tuesday with a plan to follow-up with the surgeon and schedule the surgery.

Two possible solutions were discussed.  One was to just tack down the cecum and ascending colon so that they could no longer move, the other was to remove the cecum and ascending colon, which is called a “right hemicolectomy”.  The surgeon and I discussed the pros and cons and I decided to have the removal.  He felt the tacking procedure often did not work on a permanent basis resulting in additional problems down the road and another surgery.  I didn’t want that; I just wanted it fixed!

My big fear was that I would wake up and find a colostomy bag!  I repeatedly told the surgeon that I did not want a colostomy!  A colostomy is a surgical procedure that brings one end of the large intestine out through an opening (stoma) made in the abdominal wall.  Stools moving through the intestine drain through the stoma into a bag attached to the abdomen.

My surgery was scheduled for Jan. 26, 2015.  Thankfully I didn’t experience any additional problems before that date.  The surgeon was able to do the surgery laparoscopically and it went well.  The surgery performed was a right hemicolectomy, meaning my cecum and ascending colon were removed and my small intestine was reattached to the transverse colon.  I also had adhesions (bands of ­fibrous tissue that can form between abdominal tissues and organs) that the surgeon had to remove.  I was in the hospital for five days recovering and then discharged to go home.  My recovery at home went without any further issues.

Right Hemicolectomy

Right Hemicolectomy

It has now been almost 10 months since the surgery and I am doing well.  Occasionally I experience a vague lower abdominal ache, but nothing significant.  Prior to all of this, I would experience feelings of movement in my lower abdomen.  I remember asking my husband one night if he ever felt his colon move.  He looked at me so strangely and laughed like I was a little crazy!  I told him that I was serious, that I could feel my colon move sometimes.  It was a strange feeling too; sometimes like a clunking feeling and other times it felt similar to the movement of a baby when you’re expecting. Since my hemicolectomy I haven’t felt that movement!

So the anniversary of my diagnosis is next month.  An unattached cecum and ascending colon is a condition you’re born with and it isn’t very common.  My first 59 years I had no idea that my cecum was moving about as freely as it wished!

My surgeon and my primary care doctor have both informed me that adhesions often come back, so I realize I might have another surgery in my future.  Only time will tell, but for now all is well!

Sue January 7, 2016, 12:36 am

Thank you so much for this! I in the process of scheduling surgery for my mobile cecum due to abdominal pain

Teresa January 7, 2016, 10:51 am

I am so glad that I was able to share my experience with you! Did you just find out about your mobile cecum and what procedure is going to be done? I wish you the very best of luck! Let me know how it goes.

Sue January 7, 2016, 11:27 pm

I just found out at the end of last year when I had a CT scan done to see what has been causing my random recent abdominal pain. My cecum is now under my belly button! The surgeon wants to remove the cecum entirely laparoscopically. I am scheduled for a colonoscopy next week to make sure there aren’t any other reasons for the pain.

Teresa January 8, 2016, 10:05 pm

Hi Susan, It sounds like your surgeon is planning the same surgery that I had done. Mine was laparoscopic as well. How are you feeling now? I hope your colonoscopy goes well; I will be anxious to hear! God bless you, Teresa

Sue February 22, 2016, 9:36 am

Hi Theresa. The colonoscopy went fine. I am all clear to schedule my surgery. Ideally, I would like to lose about 20 – 30 lbs. first so that it is easier for the surgeon and easier for me to recover. I am planning to schedule for early May. It hasn’t been bothering me too much recently. Just hoping it doesn’t twist until I get it done 🙂

Teresa February 25, 2016, 7:03 am

Hi Susan, I was so glad to hear the colonoscopy went well. I also hope it doesn’t twist again. I remember worrying about that very same thing while I awaited surgery. Please stay in touch.

Susan April 3, 2018, 4:25 pm

I found this blog by chance while researching cecal volvulus. It is very comforting to find you and others who have had similar experiences. On December 8, 1917 I had knee replacement surgery. While I was recovering, I developed abdominal pain similar to many times in the past but this time it wouldn’t go away. I could not find a comfortable position to lie in. Plus, I had an odd sensation of weakness going through my body. My husband called 911 at 5 a.m. on December 23. The paramedics said my vitals were normal except for a racing heartbeat. I opted to stay home. All day and through the next night I was miserable. On Christmas Eve morning my husband drove me to the emergency room. After a CT with contrast and ultrasound of my legs looking for a blood clot from the previous surgery, I was sent back to the bay where a surgeon immediately came to tell me the news. I had a volvulus and needed immediate surgery only two weeks after my knee procedure. (I, also, had a tiny blood clot in my lung.) I was shocked but had no choice except to go to the OR. I awoke with about a 5 inch incision in my abdomen where the cecum, appendix and approximately 1/3 of my colon were removed. I was put on IVs which included a blood thinner for the embolism in my lung. My intestines were not responding as days went by so I had a barium enema. Following other testing, I could not keep fluids down. I ended up with an N-G tube and a PICC line for nutrients. My system finally started working again and I was sent home two weeks and a day later. My incision was reopened the morning I left the hospital to heal from the inside out. I had to pack it each day at home. I missed Christmas Eve, Christmas Day and New Year’s with my family. My family was very supportive and I got through it all with the prayers of family and friends. The surgeon’s told me I was probably born with the condition. The cecum was the size of a small baby when removed. It literally popped out on it’s own once my incision was made. I feel tremendously lucky and am healing well. (I, also, have a compression fracture with complete collapse of L1 in my spine after falling in April 2017 while trying to help my young grandchild when he had a stomach bug at my house. Needless to say, 2017 was not a good year for me!

Teresa April 3, 2018, 9:11 pm

God bless you Susan, you certainly went through a lot. I am so glad you are healing well and I hope everything continues to go very well. I haven’t had any problems to speak of since my surgery other than some cramping at times before my bowels move. It is something no one hears about unless it happens to them. Keep in touch!

Kristi January 30, 2016, 9:59 pm

Thank you so much for posting your experience. The past two weeks have been crazy for me. I’ve always been told I had IBS due to all my stomach issues. However, two weeks ago while at work in a hospital, I started experiencing abdominal pain. It continued to get worse over two hours. I thought maybe it was gas or cramping and hoped that it would get better but it only got worse. I finally went to the ER. Pain by that time was excruciating. They started with a CT scan. Doctor came in and said things didn’t look right. So, they did another CT scan with barium contrast. Finally, three hours later, I was told that I had a mobile cecum. I had never heard of this diagnosis. In the end, I was sent home and told to see surgeon ASAP. I saw the surgeon and he said he had no way of proving that the pain I had was due to the mobile cecum. He said if the pain continued then surgery was an option. He said he only performs hemicolectomies. He said that that cecopexies usually cause more issues down the road. So, two weeks later and my abdomen is distended with constant aching but no pain so far like I experienced two weeks ago. It is scary to know that it could happen again at any point and time. I have an appointment with a Gastroenterologist in 3 days. I guess I’ll have to wait and see what he says. Thanks again for your story. It helps to know that their are others dealing with the same medical issue.

Teresa January 31, 2016, 6:35 am

Hi Kristi, I am so glad it helped you to read my story. My surgeon told me the same thing, that cecopexy surgery usually didn’t work. So good to know we were told the same thing! So it sounds like when they did the CT scan they could see that it was out of place but not necessarily twisted or turned upwards. I wonder though, if your cecum had been twisted causing the initial pain and had untwisted itself by the time they did the scan. I am so glad to hear you are seeing a gastroenterologist in 3 days. I think he will suggest a colonoscopy so he can get a look inside. And he may refer you to a surgeon. It is scary wondering if or when it will happen again; I remember feeling that way waiting for my surgery. I am sorry to hear that you are experiencing bloating and constant aching. Be encouraged, my right hemicolectomy surgery went well and I have done very well since. Sometimes I have a little cramping or a mild dull ache, but nothing bad. I will follow-up with my surgeon in March. Please let me know how you are doing and what the gastroenterologist says. Good luck Kristi!

Kristi February 8, 2016, 10:37 pm

Hi Teresa,
Well, I saw the gastroenterologist and he didn’t seemed to be very concerned about my issue. First of all, he had not seen my CT scans at time of visit. So, he didn’t really have much to say. He poked around my belly and in the end said he wanted me to take Probiotics for two weeks. He said at the end of two weeks, to call his office and give an update as to how I was doing. I left somewhat frustrated! I guess he nor the surgeon are very worried about my mobile cecum. I’m still bloated and have odd pains throughout my abdomen daily but not as often as before. I guess I’m just suppose to move on and hope and pray it doesn’t happen again. It seems to me that they don’t feel anything needs to be done until I have another episode which is scary because what if I’m not close to a hospital?? Well, I will continue to keep you updated! I like having someone I can talked to that really understands the situation and the pain involved. Unfortunately, I feel like my friends and family really don’t get it. Thanks and I’ll update you again soon!

Teresa February 25, 2016, 7:15 am

Hi Kristi, I am sorry to hear you are having such a hard time! Will the gastroenterologist be getting a copy of the CT scan? I hope so. When they did the scan did they say where your cecum was located at the time? I understand the scary feeling of never knowing when or if it will happen again. The pain was terrible when my cecum actually twisted on itself. My second trip to the ER is when they took my situation seriously because my cecum was so distended it was at risk of rupturing. Do you have a copy of the CT scan results? If not, that would be good to get so you can read it for yourself.
I hope you have a follow-up appointment with the gastro doctor at some point. Remember, if you aren’t happy with him, you have the right to see another gastroenterologist for a second opinion. Thank you for updating me! Teresa

Mary June 8, 2017, 1:31 pm

I have the same problem with my doctor not seeming to feel it’s too important. I’m in constant pain that I tolerate but it seems to be getting worse. I don’t really know what to do other than hope and pray also that I don’t end up in the ER

Pat August 7, 2017, 7:32 pm

Teresa. I am very happy to read your blog. I am seven years post op for cecum removal along with part of my small and large intestine. Mine was also floating and had grown to 14 inches long. It also moved ” like a baby ” inside and everyone thought I was crazy. I have some complications and was wondering if anyone else has problems with diarrhea. I see a gastroenterologist and have failed on five medications to stop it. He just says it’s from my cecum removal.
Your story is so similar as mine with abdominal pain and hospital stays. After years of testing I had a small vowel follow thru and the radiologist found it under my rib cage. Later it floated on down but was always on the move.
How are you doing now ? Thanks. Pat

Teresa August 7, 2017, 7:47 pm

Hi Pat, It’s so good to hear from you. I am doing good. In the beginning, my bowels were very irregular, I never knew if I would have diarrhea or struggle to go. I had always anticipated a problem with diarrhea because it is your colon that absorbs water from your stool and with a big chunk of it gone, that often leads to diarrhea. I have days where my bowels are really loose and other days I need to use a stool softener, it seems a bit odd. I have anticipated a problem with adhesions growing back, but I haven’t had a problem to date. How severe is your diarrhea? Thank you so much for writing to me and please keep in touch! Teresa

Teresa October 18, 2017, 10:23 pm

Hi Pat, I am doing well. At times I have issues with diarrhea, but I have been very fortunate that it isn’t severe or constant. I hope your problems will improve. Besides diarrhea, are you doing well? Teresa

Barbara Radisavljevic December 5, 2016, 3:11 am

That must have been a very scary experience. I think my mother had a similar kind of issue when she was in college, but she never told me the details. I just know she had surgery. I think her intestines were wrapped around her appendix, and they removed the appendix.

Teresa December 5, 2016, 8:03 am

Hi Barbara, thank you for stopping by and reading about my experience. Yes, it was scary! Merry Christmas to you and yours, Teresa

Shawna Rankin December 18, 2016, 12:54 pm

Thank you so much Teresa for sharing your experience it help me to see I’m not alone in this and now I have some one to talk with about it…I was just in the hospital pain hit me at 5:00 am…. it was bad vomiting blood in so much pain… I came home after 6days in the hospital I have an appointment coming up to see my Gastro doctor to see what we are going to do I will keep you posted…Shawna

Teresa December 19, 2016, 7:58 am

Shawna, I’m so sorry to hear about your experience. Were you told in the hospital that you have a mobile cecum? I know it is incredibly painful! I’m so glad you found my story and I’m anxious to hear what your gastro doc says. Teresa

Shawna Rankin December 19, 2016, 11:28 pm

Yes I was told in the hospital about the mobile cecum…. and on top of that I have a kidney stone 7.50….so i will be having surgery next month to get the kidney stone removed please keep me in your prayers but i will keep you posted…. thank you again for posting your experience….

Teresa December 20, 2016, 7:28 am

You are so welcome. I will keep you in my prayers and thank you for keeping me posted.

Elspeth Newlands March 5, 2017, 4:21 am

Thank you for your thread. I posted my story on another medical stories site!! I was found to have a mobile cecum at the age of 55! constipation had steadily got worse over the years and I was sent for a colonoscopy. The GI thought I had a tumor as he could see the imprint of something leaning into my colon so I was sent for a CT scan. After the first scan I was told to go take a walk for half an hour! ( I later found that was so they could call my doctor to tell him they couldn’t find all my colon!! They hoped the walk would settle it somewhere! )I returned and it was found in my upper left quadrant! My GI who was about to retire said it was the first time in all his years of practice he had seen this! The “tumor” had been one of my organs as the colon was floating!! I was then sent for a barium procedure (terrible!) and spoke with two different surgeons. One wanted to do a resection and the other was willing to go the laparoscopy route of tacking it down. That was over six years ago and everything has been great – no more constipation!
I smiled at your description of your moving colon! I too experience that fluttering feeling especially when I went to bed and it reminded me of the pregnant flutters!! I was always detoxing thinking I had parasites! I used to instinctively hold my tummy when I ran (and I would rarely run as it was uncomfortable)
I feel blessed they found mind before I ended up in ER – I was told I was an emergency waiting to happen. There is life after cecopexy!

Teresa March 7, 2017, 6:23 pm

Hi Elspeth, I am so happy that you found my story and shared yours with me! I’m also very glad that your story had such a happy ending. It has now been over two years since my surgery and I’m doing well too. So good to hear from you! Teresa

Kim April 12, 2017, 10:31 am

Glad to have found this. I’ve experienced constant colic pain in my lower right quadrant my entire life. I thought it was “normal”. Never had a day without it. Over the past 2-3 years I have had issues with constipation which ended in diverticulitis, multiple CT scans, a colonoscopy, etc. Then around January of this year I started feeling extreme pain in the upper part of my stomach in the center. I went to my GI, he had me go for a ultrasound (all normal), endoscopy (hiatal hernia which we knew about)…… then another CT scan. 1 day after the CT scan I get a call from my GI, “Nothing urgent, please call me back to discuss your CT.”. If that doesn’t just set your nerves off, I don’t know what does. It was after 5pm, so I had to wait till the next day. I called and left a message, he called me back and informed me I had a Mobile Cecum, that my cecum was sitting up right where I was experiencing pain in the middle of my upper stomach and he wants me to see a surgeon. OK, so I call and schedule and appt with the surgeon who removed my gall bladder 7 years ago, but I couldn’t get in to see him for 2 weeks which was March 7th. I researched and was certain I would have a cecopexy. I saw my GI in the mean time to get all my records and I ask him what he thinks, he said he’s been practicing for 30 years and he’s never seen this before (scary knowing we live in a metropolitan area), and he would defer to the surgeon as to what to do. I finally see my surgeon and he says hemicolectomy and it needs to be done quickly and I should not travel etc until I have this taken care of. Needless to say, I was shocked and scared. I’ve gone 50 years with this constant pain, getting sudden stabbing pains if I bend forward too much like something is cut off to stuck, strong feelings like I have an alien moving in my stomach or that light fluttery pregnancy movement. I thought those feelings were normal!!! My surgery was March 17th, I am now 3 1/2 weeks out from the colon resection and my husband and others have commented on how I look like I’ve lost weight. Nope… NO weight loss, but my stomach isn’t as distended as it always was. Now I know why I never had a flat stomach like the other girls had in high school!!!! Anyway…. I am hoping to start to be feeling much better soon and hopefully better than I did before surgery. I’m eager to find out what “normal” is, because I’ve never experienced “normal” when it came to my stomach. Although I have to admit, I am a bit nervous when I have had any pain or cramping since surgery because I feel like something else might be wrong. Not sure if anyone else has had that feeling, but I think knowing how this is usually not found until it is a life threatening emergency, it scared me a bit. My incision is about 8 inches long it starts about 5-6 inches below my belly button, goes around my belly button and ends about 1-2 inches above my belly button. I know my stomach is still swollen from surgery, but I’m already feeling the benefits of no distension. If anyone has any info on recovery and what to expect, I’d appreciate it. Research into this has been hard to say the least, there aren’t many of us out there!

Teresa April 13, 2017, 7:44 am

Hi Kim, I’m sorry to hear you have had to go through this.
I’m so glad you found my post, I love to hear from other people that have been given this diagnosis. Take care of yourself, you just went through a major surgery. Don’t try to do too much. My surgeon was able to do my surgery laparoscopically and that makes recovery easier. It has now been 2 years for me and I have done well. Everything is good and I’m happy, but my bowel movements are different than they were. Sometimes looser, but then I have some constipation too. If I drink Metamucil every day, I’m good. Your right, there aren’t many of us out there. We’re “special”! HaHa! Please let me know how your recovery goes. Teresa

Kim April 13, 2017, 11:18 am

Thank you for responding! I am trying to take it easy, but I find I start to feel better, then I over do it and I’m back in pain. I’m not one to sit back and let others “do” for me. I’m having to learn how to delegate and let others take care of me for a change. Not an easy thing to do! LOL

I’ll keep you updated! 🙂

Teresa April 14, 2017, 6:24 am

I know, it’s not easy to sit back, but it’s important to let others take care of you right now. Give that body a break! I hope everything goes perfectly and you heal beautifully! Teresa

Mary June 8, 2017, 1:16 pm

I’ve had pain in my right side for about 6 years now and have had several ct scans with and without contrast and it never showed but when I had my hysterectomy my doctor also did an exploratory procedure since I had complained so much of that pain and found my cecum was detached. He took photos of it and referred me to gastroenterologist and I went and had a colonoscopy and that dr made no more mention of it and I’ve been back and complained of the pain and still nothing. I’ve pretty much given up and thought I’d just have to live with it. However, lately I am having more pain and I’m hurting like a feeling of something tearing when I cough or strain so that’s why of course I googled and your page. I’m kind of at a loss as what to. Scared also that I will soon end up in the er and I have told my husband that if I do it is going to be because of this very thing. I find that it is so hard to get a dr to listen to me and help me

Teresa June 8, 2017, 9:38 pm

Mary, I am so sorry to hear that you are going through this ordeal. Have you tried to talk to your gastroenterologist about your detached cecum? He needs to sit down and discuss it with you! That is very surprising that he didn’t do that after the colonoscopy. Can you schedule an appointment to go in and speak with him and find out his thoughts; such as does he feel that nothing needs to be done and why. There is a procedure in which the cecum is just tacked down, called a cecopexy. Good luck, please let me know the outcome. Teresa

Diane M Bisila July 10, 2017, 9:06 pm

Hi Teresa,
I was found to have an incidental mobile cecum and appendix when I had a CT scan with contras, for frequent daily generalized and lower mid abd. pain and nausea. My case is a little complicated given that I’ve had celiac dx. since 2004, and now recently the diagnosis of Mast Cell Activation Disorder. I have 101 symptoms literally. So glad that I have this last diagnosis as I am too sick to work. The Radiologist actually called me as I was thinking of seeing a colorectal surgeon. He said, this is simply an incidental finding, and nothing more is needed to be done about it. I am 61, and just found this out! My cecum and appendix are actually located in my upper mid abdomen. He said, that my ascending colon is where it should be, on my right side, but I have my doubts about that too. He said my a and c simply flipped over, and are where they are now. He also said to stay as far away as possible from any colorectal surgeon. I am sensitive to gluten, and many other foods and substances including, all dairy and butter, goat’s milk, all red meat and derivatives including gelaton, some sulfites, and many salicylates. I think much of my abd. pain is assoc. with my many allergies, many I don’t yet know I have. I have a bulge where my cecum is, just below my breasts. I have an appt. soon for MCAD, so I can ask her about this big cecum bulge. So strange! Thank you so much.

Kim July 11, 2017, 3:36 pm

Mary….. a colonoscopy doesn’t show a mobile cecum. Get your Gyno or whomever did your hysterectomy to send his findings to you and your GI, if your GI does nothing, then find another GI. Your GI should refer you to a general surgeon who can make the recommendation on what to do, cecopexy or hemicolectomy. Don’t wait until it becomes an emergency. Once surgeon saw me, he advised do not leave travel or leave town until I have it taken care of, needless to say surgery was scheduled for the following week. Good Luck and keep us informed!!!!

Teresa July 11, 2017, 9:30 pm

My first trip to the ER a CT without contrast was done and they said they didn’t see anything. My primary care referred me to a gastroenterologist and he did a colonoscopy. It was the gastro doctor that discovered my mobile cecum during the colonoscopy. My cecum had untwisted, but was not where it should have been and there were areas of bleeding and ulcerations from the time it was twisted and the lack of blood flow. My second trip to the ER after the colonoscopy revealed a greatly distended cecum and I was immediately hospitalized to monitor it. My surgeon preferred to wait, see if the cecum reduced in size and then schedule the surgery. Thankfully the cecum did reduce in size and the right hemicolectomy was scheduled rather than having to do it as an emergency surgery. It was scary waiting for the surgery, wondering everyday if my cecum would twist again. Everyone is different, but in my case it was caught during the colonoscopy.

Melissa September 27, 2017, 12:13 am

Just had this done scary to no that I am 45 and never new I had such a big problem going in with my stomach he said i was born with it all the upper gi and the lower ones I have had over the years u would think they would of see this. It’s will be 4 weeks Friday and I am still sick have a doc app thur can t wait I have alote of questions they took out my apendix to because it was not were it should be . I feel like nothing has changed i still feel bloated I eat in in the bath room just frustrated that this was never found with all the problems I have had all my life. I’m glade i have found some one else who has been through what I been through it’s not easy .Just want to get more info about it if any one can help me .

Dee Dee Bear October 4, 2017, 2:10 pm

I’m so glad I found your site. This is such an uncommon problem and it makes me feel connected to read the stories others have posted. When I talk to most people they don’t really want to know the details…..just the outcome. My story started Wednesday, August 23, 2027 in a minor way and got REAL real fast the following morning. By early afternoon August 24th I was in the ER and a CT showed my cecum and ascending colon stretched across the middle of my abdomen. I was painfully distended. The cecum had flipped 360 degrees and was full of about 50 ounces of colonoscopy prep(Miralax and Gatorade). I thought my pain was due to being backed up and I just needed a good bowel movement. Not so! The CT showed the swollen cecum stretched across my abdomen and above my belly button causing the incision to be both below and above my belly button. The surgeon was worried the cecum would rupture during removal otherwise. I had an emergency right ileocolectomy.That was 6 weeks ago and I’m recovering nicely and return to work next Monday. I seem to be able to eat whatever I want just not too much at a time or I’m miserable. My biggest battle now is dealing with the exhaustion! Good luck to everyone. Feel free to contact me.

Teresa October 18, 2017, 10:20 pm

Hi Dee Dee, I am so glad that you connected with me. I am also so glad to hear that your surgery turned out well. That would have been very scary! How are you feeling now? I hope your recovery has continued to go very well. Teresa

MARY ANNE October 18, 2017, 12:31 pm


Teresa October 18, 2017, 10:12 pm

Hi Mary Anne, I’m so glad you found my story and shared yours with me. Is she doing the same procedure I had; a right hemicolectomy? I have been very fortunate and have not had any problems since my surgery. Keep in touch and let me know how it goes. Teresa

MARY ANNE October 18, 2017, 1:11 pm


MARY ANNE October 18, 2017, 1:41 pm


Kim October 19, 2017, 1:42 pm

Hi Mary Anne…. You are not crazy! I felt the same way until I was finally diagnosed this year. My right hemicolectomy was in March of this year. So far my recovery has been pretty good. I’m finding out what my new normal is, never knew life without stomach pain. This is weird but great!!!

Teresa October 19, 2017, 7:39 pm

Hi Kim, I’m so glad to hear you’re doing so well! My right hemicolectomy was 2 yrs and 9 mos ago now and I’m doing well too. Do you have any problems with diarrhea? Teresa

Kim December 20, 2017, 10:44 pm

Hi Teresa… I just saw your comment. Sometimes I do have bouts of diarrhea but it isn’t too bad. One thing I’ve noticed is I can’t hold it like I used to. Now if I have to go, I have to go! Lol

Teresa December 21, 2017, 10:22 pm

That is the way I would describe what I experience, bouts of diarrhea but not too bad, although I have had a couple embarrassing events!

Kim December 23, 2017, 8:42 am

Well that’s better than the potential emergency situation we were living with!!! Lol

Teresa December 23, 2017, 10:31 am


Janey November 3, 2017, 6:49 am

I have a mobile cecum, but perhaps not as critical as others here although one or two episodes have been severe. Unless there’s an emergency it would seem that surgery might be optional, necessary if I get another really bad attack but otherwise more preventative. I’m interested to know if digestion and bowel function are the same after surgery or if there are any changes it would be helpful to know about.

Teresa November 3, 2017, 11:05 pm

Hi Janey, I’m glad you found my story. I haven’t noticed any difference in digestion. As for my bowels, it hasn’t been bad, but they are more inconsistent. When I need to go to the bathroom, it can be an emergency, but it’s certainly not always that way. I have read stories of people who have had a rough time with diarrhea after a hemicolectomy, but overall I have not. How was your mobile cecum diagnosed? When you say “preventative” what do you do?

Janey November 4, 2017, 4:09 am

Hi Teresa,

Like others on here I’ve had intermittent bowel problems all my life and put them down to wrong food choices, nervous reaction to stress, adhesions etc etc. I was hospitalised in my mid twenties with an obstruction, very seriously ill, but no-one explained to me what that was. I had campylobacter a couple of years ago and since then have had many repeated attacks of paralysing cramps, diarrhoea and vomiting (projectile for the first time ever, and very strange it is too!). My Mother died of cancer of the cecum which had spread to her liver and I decided to get mine checked to see if it was causing the problems.

The professor who performed the colonoscopy was unable to get round as he met an obstruction, so sent me for a CT scan. That, to my surprise, showed up a mobile cecum. A laparoscopic investigation was suggested but, as I was symptomless at the time, I declined. The arrangement now is that the consultant has given me an x-ray form and told me to get to a radiologist as quickly as possible after an episode so that he can see what’s going on. Unfortunately his hospital is an hour from home, and driving after an attack (I’ve had two since I saw him) is a bit too risky as I have no-one to take me and I’m worried about driving.

I’m 68 and when I’m well I’m very well indeed. If I can avoid surgery I’d like to because at least I’m familiar with what I’ve got now and I’m afraid of making matters worse. I’d very much like advice from people who’ve gone down this path as to whether I should bite the bullet and have my cecum removed before it becomes an emergency.

Teresa November 7, 2017, 8:47 pm

Hi Janey, thank you for your comments. I can’t give medical advice, this is a decision that you and your doctor will have to make. It seems though that when you have your episodes it may be because your colon is twisting and then untwisting. My fear in your situation would be that my colon would twist and stay that way, cutting off blood supply to the colon. Is there any way that you can arrange for someone to drive you to a radiology facility when an attack starts. You don’t want to be in an emergency situation and an hour away from help. I have done very well so far after having my cecum removed. There is another procedure too, called a cecopexy, in which they tack your cecum to the abdominal wall instead of removing it. I would suggest talking this over with your gastroenterologist and getting his recommendation. Let me know how you are doing and what you decide. Teresa

Cindi December 15, 2017, 1:42 pm

It has been almost exactly one year since my ileocecectomy. I too had been diagnosed with everything from IBS, Crohn’s, Celiac to ulcers since I can remember. I had multiple colonoscopies over the years and was finally berated by one gastro who told me that I had nothing wrong and it must be psychological. I knew something was indeed wrong and I stuck to my gut (pun intended). I went to a different gastroenterologist. SHE listened and sent me for a CT Scan with contrast. The radiologist determined that I had a Cecal Bascule and surgery was imminent. This meant that my traveling cecum gone north up into the right quadrant. It was pushing on my liver and the pain was getting worse as the days passed. I found the right surgeon just as it was getting to be an emergency situation. He did the surgery laproscopically. I had a few bumps in the road. I take vitamins subligually now because absorption is a bit tricky. I still know where every bathroom is wherever I go, but I feel like I have had a second lease on life. If you have the means, opportunity and are healthy enough to have the surgery, please consider it. It was such a scary time for me and I am pleased to see that there is a place for others to discuss and share their diagnoses and options.

Teresa December 16, 2017, 1:35 am

Thank you so much for sharing your story with us Cindi! I love hearing from others who have faced this. I’m glad you are doing so well. I’ve done well also. My bowel movements aren’t the same as prior to my right hemicolectomy, but no major problems. They’re actually erratic, ranging from a bit constipated to loose stools and when I have to go, I have to go! It was a very scary time and it seems from everyone’s stories, often misdiagnosed in the beginning.

Geri December 18, 2017, 11:26 am

FINALLY! I am 50 years old and have had years of issues. Has anyone seen Dr. Kumar at Virginia Mason in Seattle?

Teresa December 18, 2017, 9:23 pm

I haven’t, I live in the east. Anyone else?

Geri December 19, 2017, 11:16 am

The anticipation of my surgical visit is nerve wracking! It is set for January 19th, but I’m on a waiting list.

Teresa December 19, 2017, 9:20 pm

What is your exact diagnosis and what type of surgery is scheduled?

Geri December 19, 2017, 9:29 pm

This is a surgical consult, for mobile cecum. Its nerve wracking because I want to know exactly what procedure she plans on performing.

Teresa December 19, 2017, 10:00 pm

It is stressful; always on your mind until you have a successful surgery. She will give you her opinion of what will be best. Is this your first time meeting with her? Let me know what the outcome of the appointment is.

Cindi December 20, 2017, 9:21 am

Is there any chance of a second opinion? One surgeon I went to said that he wanted me to wait about a month before the surgery because he thought that I was a good candidate for a new robotic surgery. I told him that every part of my being was telling me that the intestine was failing and I could not wait. He moved up the surgery by a few weeks. I called another surgeon that was affiliated with Yale New Haven Hospital (I am very lucky to live rather close to Yale). This doctor came highly recommended by my gynecologist of all people. He told me that I could not wait and scheduled the surgery for three days later. One of his specialties is laproscopic surgery. All I am saying is that there are so many options and opinion. My faith helped me to know when the right option was in front of me. Ask lots of questions, don’t believe everything that you read on medical websites, be kind to yourself and listen to your body. It sounds like your options will include a cecopexy, ileocecectomy or a right hemicolectomy….or even take a wait and see approach. I have pretty strong opinion about a few of those. You will know what is right for you. You shall be in my prayers.

Geri December 21, 2017, 10:16 am

I am beyond grateful for this site! I will update as any news comes along. I can say one thing….. All of you on this site are Amazing strong ladies. Keep the stories flowing.

Teresa December 21, 2017, 10:16 pm

Thank you Geri! I think we are in a rather specialized club! I’m very interested in knowing how everyone does as time goes on too.

MomTo6 January 8, 2018, 12:11 pm

Thanks for writing this.
I am pretty sure this might be what my 10yo has been suffering with for almost 2 years now. GI doc after only doing an x-ray of the abdomen said, ‘well, there is some constipation in his colon…that is probably why he is having excruciating abdominal pain that he thinks he is going to die until the pain subsides….’ I’m a nurse…and kinda knew it was ridiculous that constipation could cause such severe pain, especially being that there was only a ‘little’ constipation observed, and I KNEW my son had 1-3 soft BM’s a day… For the last year, we have given him miralax almost daily…and the attacks have…actually happened less frequently…but, I know this…constipation, does not cause this much pain.
It took him have another SEVERE bout of acute abd pain, to prompt me to read again, and find help for him. We see the doc to day…we’ll see.

Thanks again for sharing…

Teresa January 8, 2018, 1:37 pm

Good luck at the doctor office today, I hope he/she gives you a much-needed answer. I feel for your son, I know how painful it can be. I also agree with you that constipation does not cause this much pain. I’m a nurse too and had never heard of a mobile or floppy cecum. None of the other nurses I’ve asked have heard of it either. Please keep me informed of the results of your visit.

MomTo6 January 9, 2018, 9:46 pm

Pediatrician concurred, that it was a bit ridiculous to tell us to just take Miralax over this last year. It was ‘sorta’ easy for even this RN to submit to…being that it did seem to improve and the bouts of severe pain, seemed to space out, and be less severe…

My son admitted to me, that it has become so ‘normal’ to him, that he only reports the severe bouts, and chooses rather, to suffer alone, on the floor of his bedroom during the day, if a milder bout hits him. Sometimes they ‘are’ milder, and we have 6 kids, and I homeschool 4 of them, including him, and the one who goes to school is special ed and just got a pacemaker, and so much more I am managing as a mom, {20yo daughter who is in her 1st year living independent, post brain injury…ect..}

He sees the GI doc Thur. He seems fine now. But, this has been going on for 18 months.

We’ll see.

Teresa January 10, 2018, 8:42 am

Michele, it sounds like you definitely have your hands full and you’re doing a fantastic job to manage. I’m glad he’ll be seeing the GI doc on Thursday; also glad he seems fine now. If you don’t mind, keep me updated. Teresa

Geri February 14, 2018, 11:56 am

My surgery went well! It was last Wednesday, and I’m beginning to feel pretty good. I’m still pretty tired however. My Dr. Was able to perform the surgery laproscopic. She went in through the left side with 3 ports, and one through my belly button (which is quite tender). She scared up the right side of my abdominal wall, grabbed my cecum, which was floating quite high, and stitched it down into place. I was only in the hospital one night. Whew, on to resting and recovering.
P.s. I still feel so bloated! Lol

Teresa February 15, 2018, 9:00 am

Hi Geri, thank you so much for letting me know how it went. I am so glad that it went so well! Take good care of yourself now! Teresa

Lisa Marshall August 16, 2018, 11:57 am

Hi Geri,
How are you feeling 6 months after surgery? Did you like your surgeon and what is her first name? I’m looking for a surgeon in the Seattle area.
Hope all is well!

Nancy February 19, 2018, 7:59 am

Thank you for your blog post. I have had a similar situation. It’s hard to find others with a cecal volvulus. Most bowel resection surgeries are for other reasons on the sigmoid colon, I’ve learned. I went to the ER Jan 26 and they immediately did a CT scan and found the cecal volvulus. My emergency surgery was Jan 27. Immediately after surgery I was responding to treatment well and was discharged 5 days later. About a week post-surgery, I developed a fever and returned the hospital for a blood bacteria caused by the surgery (a normal gut bacteria creeped into the bloodstream). I was in the hospital six more days on IV antibiotics. I’m still recovering from all the awful side effects of the antibiotics. Most of the pain has now subsided but I have a lower center pelvic pain and a weird pain near my right pelvic bone. I’ve been told to expect to be somewhat “out of commission” for about 12 weeks – at a minimum. Thanks again for posting: Your blog was about the only thing that popped up on a search for mobile cecum surgery that wasn’t a medically scientific paper submitted to the Institute of Health!

Denice Webb March 10, 2018, 11:03 am

I want to thank you for sharing this. I know it’s been several years since posting, but you are giving me the courage to push for my surgery, as opposed to waiting or having mine tracked down. My cecum is now mid to upper abdomen! Bless you and thank you again.

Teresa March 11, 2018, 4:44 pm

Thank you for commenting Denice! Can you share your story with us? Or if you would rather just email it to me, please do at

Ness May 2, 2018, 3:54 pm

Hi. I’ve just come across your blog. I too had a mobile ceacum …it was discovered 20 years ago when I was in my 20s. I suffered with stomach pains all my life sometimes so extreme I was almost paralysed with it, clammy and so bloated. After an emergency hospital visit, several X rays, scans and an MRI later they thought my bowel was consatinering. They decided to operate …open surgery and a few hour later they found it wasn’t that but my ceacum and ascending colon weren’t attached. They performed a cecopexy and left my appendix in!! Several years on after moving around a bit there is virtually no record just a small note on my doctor’s files to say I had a ceacal volvulus and cecopexy was performed. I have been back on hospital since…luckily no surgery though it was touch and go. I have spent the past 4 years with constipation, severe bloating at times , lots of discomfort and yes the fluttering or occasionally clunking feeling inside. I can watch my tummy move! I am seeing a new consultant after pretty much demanding it for someone to give me some answers and to help me understand what is happening and what I can do to help myself. I have a huge scar from above my tummy button to my lower abdomen and an incision hernia. Most doctors just say keep taking laxatives etc… I understand cecopexy is not really performed now. It is good to hear other people’s stories…we are a rare breed. I’m glad youre healing well . Thanks for sharing.

Teresa May 3, 2018, 8:23 am

I’m so glad to connect with you! You’re right, we are a rare breed! Your symptoms sound almost as if the cecum has become detached again. Have they done a recent MRI? I’m glad that you have chosen to get another opinion and I hope you can get some answers. Please keep me updated, I would love to know the outcome of your visit. I wish you the very best!

Tina Skirvin June 4, 2018, 8:31 am

Omg! I could have just wrote this word for word. I have a doctors appointment and better believe we will be discussing this!

Teresa June 5, 2018, 7:58 am

I’m glad you found my story, Tina. Please let me know how your doctor appointment goes.

Roxanne June 7, 2018, 10:25 pm

Hello Teresa,
This site is literally an answer to prayer. I have been so encouraged by the bravery I see in you and in all of the people who have shared their stories with you.
Nearly two years ago I had chronic lower right quadrant pain which I worried could be appendicitis. My doctor ordered a CT scan which was read as showing no abnormalities. The pain continued, though it has never been unbearable. Another CT scan taken last month for an unrelated health condition, showed a mobile cecum (currently positioned in my upper right abdomen). My family doctor consulted with a GI doc and they both decided it isn’t necessary to do any surgery. But they said I should head for the nearest ER should I experience severe pain.
As so many have expressed, it feels as if I have an internal time bomb which could activate at any time. I am trying to trust God in all of this, but I am terrified my cecum will twist leading to an emergency, perhaps when I am somewhere far from home. I wonder if you know if there are any foods or activities to avoid, which might cause a twisted cecum…? And thank you for your prayers!

Teresa June 10, 2018, 10:15 am

Hi Roxanne, thank you for connecting with us! I am not aware of any foods or activities to avoid to keep the cecum from twisting. I don’t know what caused mine to twist when it did; I had eaten soup and a tuna sandwich and was just sitting when it started. One course of action you might consider is to meet with the gastroenterologist and express your fears and concerns with him/her, and ask their thoughts on a laparoscopic cecopexy (tacking the cecum to the peritoneum). In the meantime, definitely head for the nearest ER should you experience severe pain. I definitely believe in the power of prayer, and I believe that God uses doctor’s every day. Please keep in touch. Teresa

Kim July 18, 2018, 2:08 pm

Hi Roxanne,
If I were you, I would get a second opinion from a surgeon or another GI. A smart GI will refer you to a surgeon for an evaluation and opinion.

Keep us posted!

Roxanne Hostetter Nassan June 13, 2018, 10:42 am

Thank you, Teresa. I will keep you posted. I definitely do not want to live in fear. I will check into the cecopexy with the GI doc.

Lisa July 1, 2018, 3:44 pm

Does anyone know if your cecum can return to its normal position and look attached when it isn’t? I was just diagnosed with a mobile cecum (it’s currently on my upper left side) after going in to the walk-in clinic with intense stomach cramping and pain. They did a CT scan and saw it was in the wrong place. I’ve had stomach pain on and off for a couple years and had a CT scan about a year or so ago and they said it was in the correct position at that time. I’m trying to get in to see my GI doctor but have to wait three weeks. Is that the first step you would take? Thank you Teresa and everyone else for sharing your stories. It really helps when the doctor tells you he doesn’t know anything about it!

Teresa July 18, 2018, 6:55 am

I apologize for being slow to respond Lisa! Yes, since your cecum is mobile it can move back down to where it should actually be lying in the lower right abdomen. But then it can move out of place again as well and possibly twist upon itself. Yes, seeing your GI doctor is definitely a good starting point. Good luck and keep us informed!

Kim July 18, 2018, 2:01 pm

HI Lisa…. I’ve had many many CT scans and they were all normal. When we lay back on a table to have a CT scan most of the time our mobile cecum will just fall back into place. Mine was accidentally found on a CT scan because it was “stuck” up under my stomach by my transverse colon. You will need to see a GI, yes, but you will also want to see a general surgeon. I would call and schedule and appointment with both. It will take time to get an appointment and you might as will schedule one so you won’t have to wait on the GI and then wait again on a surgeon. Good luck and keep us informed! 🙂

Teresa August 6, 2018, 8:52 pm

Thanks for your comments Lisa!

Lisa Marshall July 18, 2018, 11:02 pm

I had my appointment with me GI and don’t feel confident in the outcome. Does anyone know a good GI doctor or surgeon in Washington State or a resource to find doctors that are familiar with this condition?


Teresa August 6, 2018, 9:10 pm

Hi Lisa, I’m on the East coast so I don’t know of any. Are you near Seattle? The University of Washington Medical Center is there. A GI doctor there should be able to refer you to someone that is experienced with this if they aren’t. Good for you for seeking a second opinion because you weren’t comfortable with the first one. We have to play an active role in our own health care! FYI…my sister lives in Sequim, WA (on the peninsula) and I love to visit there.

Carrie Thomas August 1, 2018, 6:12 pm

I to am so thankful for this post ! Recently been diagnosed, but after reading comments and all the undiagnosed CT scans, I’m wondering if it’s because of the position during a CT scan. I have dealt with my condition for many years because I found if I lay flat on my back my pain will go away. I finally decided to see a dr when they read my CT from an ovarian cyst rupture they noticed my cecum out of place ! They want me to repeat a CT scan when I have another episode! It’s such a relief to know I’m not crazy 🙂

Teresa August 6, 2018, 9:01 pm

Hi Carrie, Sorry to be so slow in responding. I had my grandchildren and daughter here visiting for 4 weeks, which was wonderful but slowed down my checking for comments. I’m so glad you found this site! You’re not crazy. It’s a rare condition that seems to be difficult to diagnose. I’m an RN and I had never heard of it before I was diagnosed. Neither had any other nurses I asked about it. I’m so glad we can talk to others facing this here. Did you see a gastroenterologist? If you begin to experience very much lower abdominal pain/cramping please go get it checked. I waited too long, though it turned out okay in the end.

Scott Kirkman November 23, 2018, 12:21 pm

Hi, I’ve just been informed after a Ct scan my colon is folded over and my Cecum is in the upper right quadrant. I have Gerd as well as a Hiatyl Hernia. Pain to my left side abdomen by my lower left side ribcage and recently pain to my right side back where my kidneys would be. I’m 50 and have had a microdiscectomy on my back and have severe sciatica down both legs. I was wondering if you’ve had any of these problems. I have an appt. To see a GI doctor next week.

Teresa August 7, 2019, 8:59 am

Scott, I am so sorry that I have not seen or responded to your comment until now. I was on a very long blogging hiatus for personal reasons, but will slowly be getting back into it. I have not had any of the other problems you describe, except for the Gerd and a small hiatal hernia. I have had Gerd since I was in my 30’s. I’m very glad you were scheduled with a GI doctor and I hope you have found relief from your pain. I would love to hear what was discussed and done. Thank you for reading my story.

Robyn Behnam April 3, 2019, 10:46 pm

I have been desperately seeking for answers/ direction for my ongoing stomach pain and after multiple ER & doctor visits over 20+ years I was recently diagnosed with a mobile cecum & paraduodenal hernia. I searched Facebook tonight for that term and found this post. I am very surprised and also a bit relieved to know this is a real thing, although I am sorry you had pain! I have been to multiple doctors trying to get help for this ongoing pain & the consensus has basically been that a mobile cecum “does not cause pain” & “there is nothing that can be done”. I am very frustrated & tired of the pain… it is really affecting my quality of life and is impacting my Husband & kids.
I know these posts are old; if anyone comes across my message I would love to know the name a surgeon at least somewhat familiar with this crazy cecum issue! My pain moves from the ULQ to the LRQ.
I would be grateful for any insight here. Thank you!

Teresa August 7, 2019, 8:47 am

Robyn, I am so sorry that I have not seen or responded to your comment until now. I was on a very long blogging hiatus for personal reasons, but will slowly be getting back into it. Some people never have symptoms, but others do, just as you described. A mobile cecum definitely causes pain if it happens to twist! There are things that can be done. Many people choose the cecopexy. This is done laparoscopically and the surgeon tacks the cecum down to the abdominal wall as it should be. In my case, I chose the right hemicolectomy. After discussion with my surgeon, I felt it was my best option. I suggest getting a second opinion definitely. Good luck and I hope by now you have already received help!

Joyce April 22, 2019, 8:40 am

So glad I found this! Lots of information on mobile cecum. I have mobile cecum and is locacated in the left abdomen. I am scheduled for surgery on May 9th. My surgeon is so busy can not get me in before then. I have lost 15 pounds in the last month. Just can’t seem to get much food down. Did you have this problem? Also How long was recovery for you? I’ve already had a foot of my large colon removed years ago and it seem it took about 4 weeks to recover from that. Didn’t know if this would be similar. Thank you so much for posting this.. it’s really been helpful.

Teresa August 7, 2019, 8:33 am

Joyce, I am so sorry that I have not seen or responded to your comment until now. I was on a very long blogging hiatus for personal reasons, but will slowly be getting back into it. I hope your surgery went well, your recovery was fast and that you are living a pain-free life now!

Anne Whitney Cates December 3, 2019, 10:40 pm

I am currently 37 years old, and 2.5 years ago just a couple of weeks before my 35th birthday I had intense abdominal pain that turned out to be from an ischemic cecal volvulus that occurred due to mobile cecum syndrome. I had an emergent right hemicolectomy and also lost about 22 inches of ileum as well. I too had intermittent episodes of pain, bloating, etc leading up to the big event – they became more and more frequent and I had a couple that were about 2 weeks apart just prior to the volvulus. My surgeon told me post op that when she got in there, she saw that my entire right colon was free floating, hence the intermittent episodes and resulting volvulus. I’m a physician myself and still didn’t manage to get a diagnosis of mobile cecum until the emergency happened! The first thing I remember when waking up from surgery was patting around on my belly to see if I had ended up with an ostomy (I didn’t, thank goodness).

All’s well that ends well – 2.5 years post op and my stomach feels better than it ever felt before surgery. I didn’t realize how much chronic abdominal pain I was having until I experienced what a “normal” belly feels like! Thanks for sharing your story – I hope it leads to more people being aware of this diagnosis and seeking to get confirmation of it before it becomes an emergency.

Valerie December 26, 2019, 9:28 pm

Hi! I know this is an older post but I’m curious if others had problems with doctors taking this condition seriously? It seems like most of the posts were taken to surgery quickly after diagnosis. I went to the ER with extreme RUQ pain in March. They did an ultrasound and said I had a huge gallstone shadow. A month later I had my gallbladder out with only small stones and the surgeon said my Cecum was unattached and folded up onto the ascending colon. He told me to increase fiber. I had multiple follow ups with him due to the pain and eventually felt like I was getting nowhere (probably because he took my gallbladder purely for profit) a few months went by and I finally call my family dr to get a GI referral. He said my operation report didn’t mention my cecum that he could find and he thought seeing GI would be a waste of time. I insisted on having a GI consult. he did the request telling me they were just going to tell me it was constitution related. I’ve never even heard of a floppy/mobile cecum until my gallbladder post op. Where else would I get this information? I’m frustrated! Lucky I haven’t had a bad experience since my ER visit but I’ve had a lot of uncomfortable days, like I’ve been hit in the stomach!! I left my doctor today almost in tears, thinking I’m crazy!! Hopefully GI goes better. I live in a fairly small town. Maybe I need to go to a bigger hospital where they’ve seen this before?

Annie February 4, 2020, 2:44 pm

My mom has been diagnosed with this 3 years ago, she was 55. She had her gallbladder removed then she started having even more pain. Apparently the gallbladder removal left space for her cecum to move into. At this point she has episodes regularly. Lots of vomiting and diarrhea. But her Dr has said wait until it’s unbearable and go to ER. Then they would consider surgery. She doesn’t have good insurance and very little extra income to pay for such a surgery. It’s so frustrating that they don’t see this important enough to perform the surgery as preventative measure. I know she is scared to lose any portion of her intestines but from this post that seems to be best option. Thanks for all this information, it has been very helpful to us both.

Serene Cook October 26, 2020, 3:24 am

Thank you. I had emergency surgery 2.5 weeks ago for cecal volvulus. It came out of nowhere. What resonated with me is I could always feel things moving in my stomach. I’m still in a bit of shock from the ordeal. I appreciate your story.


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