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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!

{ 10 comments }
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

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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.

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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.

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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

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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.

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.

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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. I would love to stay in touch! My email is sisters.aginglikeafinewine@gmail.com. Feel free to contact me through the post or at my email. Good luck Kristi!

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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!

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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

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