Discussions By Condition: Medical Stories

Mobile Cecum and Constipation and severe Bloating

Posted In: Medical Stories 10 Replies
  • Posted By: geemel
  • August 6, 2009
  • 01:09 AM

At the age of 54 I discovered I had a mobile cecum - my ascending colon was not attached to my abdomen - apparently since birth as it is a congenital problem. I have spent years battling with intermittant constipation and could never figure out why as I ate an incredibly healthy diet full of fruit, veggies and fibre. Some days the constipation was very bad it felt like getting rid of bricks and other days I could be quite normal - no change in diet so I was at a loss to know why.
A few months ago I was offered a colonoscopy to investigate the problem and the specialist discovered what he thought was a cyst on the outside of the end of the colon (next to the cecum) As he was on the inside of the colon he could only see this as an impression pressing through into the colon and requested that I go for a CT scan to investigate the cyst. During the CT Scan they found no cyst, but instead found that the whole of my ascending colon was freely floating around my abdomen - at the time of the scan my cecum was in the upper left quadrant of my abdomen insteady of in the lower right. So the "cyst" according to the specialist was probably one of my kidneys pressing into my colon on the day of the colonoscopy.
As my ascending colon had been going where it pleased for 54 years it was elongated and a bit floppy!! I was then sent for a barium enema to find out exactly was going on (I wish they hadn't done this one as it took two hours for them to eventually locate the cecum as it was "hiding"!!)
I went back to see the gastroenterologist who recommended that I go and talk with a surgeon - two options - have the whole of the ascending colon removed through re-section or have the ascending colon tacked down to my abdomen. To do nothing was to risk a twisted colon at some point in the future.
The surgeon recommended cecopexy (stitching and securing the colon to the abdomen wall). My gastroenterologist recommended the re-section and removal of the ascending colon. I went to a second surgeon for a second opinion and he agreed with the first surgeon that cecopexy was the best option.
I went for surgery 10 days ago and asked the surgeon to make the decision once he was inside (using laprascopic surgery). If the colon was viable to attach to the abdomen then to do so, if not do the re-section.
He was able to stich the ascending colon to the abdomen wall although he said it was a long arduous process due to the length of the ascending colon - he started as high as just below my liver and ended up near my pubic bone - my cecum is still unattached as he ran out of space to stitch it to, but he hopes that it will not give me any problems. He showed me pictures of what he had done during surgery which were fascinating - a long row of tacking stitches plus adhesive was used with the hope that scarring tissue will develop and keep the colon in place. There is a rate of failure to this kind of operation if the colon becomes mobile again - and I need regular scans to make sure it stays in place. I am believing that it will stay there!!
The surgery took three hours and it was sore to walk for almost a week - however I refused painkillers as they can cause constipation! It took a few days for the bowel to work properly but by the 5th day post op I was having normal bowel movements several times a day and the bloating that I have had for years has all but gone.
The constipation I was having was probably due to the colon kinking and was later relieved when the colon floated off to a more accommodating position! I know that I have not been getting rid of waste efficiently for years.
Another strange symptom I had was movement in my abdomen - it felt the same as I felt when I was pregnant! I kept taking stuff to get rid of parasites over the past few years convinced that I had an alien invasion!! Instead it was my colon settling down to find a comfortable position as I lay in bed at night!!
I feel blessed that this rather rare condition was found (it is normally found in childhood - I vomited daily until I was 10 years old which should have been a signal if you knew what you were looking for!). The other way it is normally found is when you present yourself to the emergency room with a twisted colon by which time it is very dangerous.
So had it not been for the colon floating towards my kidney on the day of the colonoscopy I would never have been sent for a CT scan. The colonoscopy did not give any other clues that anything was amiss!!
So I just thought there might be others out there who have found out that they have this strange problem - I searched the internet to find out if anyone had gone through the operation but didn't have much success - would love to hear from anyone who has had a similar experience!!

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10 Replies:

  • At the age of 54 I discovered I had a mobile cecum - my ascending colon was not attached to my abdomen - apparently since birth as it is a congenital problem. I have spent years battling with intermittant constipation and could never figure out why as I ate an incredibly healthy diet full of fruit, veggies and fibre. Some days the constipation was very bad it felt like getting rid of bricks and other days I could be quite normal - no change in diet so I was at a loss to know why.A few months ago I was offered a colonoscopy to investigate the problem and the specialist discovered what he thought was a cyst on the outside of the end of the colon (next to the cecum) As he was on the inside of the colon he could only see this as an impression pressing through into the colon and requested that I go for a CT scan to investigate the cyst. During the CT Scan they found no cyst, but instead found that the whole of my ascending colon was freely floating around my abdomen - at the time of the scan my cecum was in the upper left quadrant of my abdomen insteady of in the lower right. So the "cyst" according to the specialist was probably one of my kidneys pressing into my colon on the day of the colonoscopy.As my ascending colon had been going where it pleased for 54 years it was elongated and a bit floppy!! I was then sent for a barium enema to find out exactly was going on (I wish they hadn't done this one as it took two hours for them to eventually locate the cecum as it was "hiding"!!)I went back to see the gastroenterologist who recommended that I go and talk with a surgeon - two options - have the whole of the ascending colon removed through re-section or have the ascending colon tacked down to my abdomen. To do nothing was to risk a twisted colon at some point in the future. The surgeon recommended cecopexy (stitching and securing the colon to the abdomen wall). My gastroenterologist recommended the re-section and removal of the ascending colon. I went to a second surgeon for a second opinion and he agreed with the first surgeon that cecopexy was the best option.I went for surgery 10 days ago and asked the surgeon to make the decision once he was inside (using laprascopic surgery). If the colon was viable to attach to the abdomen then to do so, if not do the re-section.He was able to stich the ascending colon to the abdomen wall although he said it was a long arduous process due to the length of the ascending colon - he started as high as just below my liver and ended up near my pubic bone - my cecum is still unattached as he ran out of space to stitch it to, but he hopes that it will not give me any problems. He showed me pictures of what he had done during surgery which were fascinating - a long row of tacking stitches plus adhesive was used with the hope that scarring tissue will develop and keep the colon in place. There is a rate of failure to this kind of operation if the colon becomes mobile again - and I need regular scans to make sure it stays in place. I am believing that it will stay there!!The surgery took three hours and it was sore to walk for almost a week - however I refused painkillers as they can cause constipation! It took a few days for the bowel to work properly but by the 5th day post op I was having normal bowel movements several times a day and the bloating that I have had for years has all but gone.The constipation I was having was probably due to the colon kinking and was later relieved when the colon floated off to a more accommodating position! I know that I have not been getting rid of waste efficiently for years.Another strange symptom I had was movement in my abdomen - it felt the same as I felt when I was pregnant! I kept taking stuff to get rid of parasites over the past few years convinced that I had an alien invasion!! Instead it was my colon settling down to find a comfortable position as I lay in bed at night!!I feel blessed that this rather rare condition was found (it is normally found in childhood - I vomited daily until I was 10 years old which should have been a signal if you knew what you were looking for!). The other way it is normally found is when you present yourself to the emergency room with a twisted colon by which time it is very dangerous.So had it not been for the colon floating towards my kidney on the day of the colonoscopy I would never have been sent for a CT scan. The colonoscopy did not give any other clues that anything was amiss!!So I just thought there might be others out there who have found out that they have this strange problem - I searched the internet to find out if anyone had gone through the operation but didn't have much success - would love to hear from anyone who has had a similar experience!!I was recently diagnosed with a detached or mobile cecum. I was referred to a surgeon. Although I told him that I was in severe, unremitting pain he said it would do me more harm to attempt to repair it. He said that I should " just learn to live with it". I am seeking another opinion. I do not have some of the symptoms you mention, mostly just the pain. I will now ask for an opinion of a gasterentologist rather than a surgeon. Here in Canada, this could take months. Hope you're doing better.
    Anonymous 42,789 Replies
    • September 2, 2009
    • 03:41 AM
    • 0
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  • I was recently diagnosed with a detached or mobile cecum. I was referred to a surgeon. Although I told him that I was in severe, unremitting pain he said it would do me more harm to attempt to repair it. He said that I should " just learn to live with it". I am seeking another opinion. I do not have some of the symptoms you mention, mostly just the pain. I will now ask for an opinion of a gasterentologist rather than a surgeon. Here in Canada, this could take months. Hope you're doing better. Thanks for your reply.I am recovering well from the surgery although have some breathing difficulties at the moment (anesthetic after effects) which I have already had a CT scan to check for potential blood clots but fortunately that was clear. I am now waiting for an echo scan on my heart to make sure it is ok. Apart from that the digestion is now great and the pain from internal stitches gone.I would ask to see a gasterentologist as you suggested - that was where my journey started. The risk of not having it done is a cecal volvulus (twisted colon)which is very dangerous and life threatening - that was what made me decide to have it done before anything like that happened. You didn't say if you had a CT scan to determine the diagnosis because it is quite difficult to diagnose without that.Also the longer you go the more worn out the part of the colon that is loose gets - my ascending colon was already stretched by several inches and there wasn't enough room internally to stitch the cecum down (the very end part) as a result of that but I am hoping that is ok. Is the whole of your ascending colon "floating" - I had over 14 inches that needed stitching down but I made it to the age of 54 without serious consequences. I think if you are having continual pain you should definitely seek further opinion.In the meantime google cecal volvulus as well as mobile cecum so that you know what you are potentially dealing with. I wish you all the best - I know it will take a while in Canada if it is anything like what I would have gone through in the UK - I know if I was in the UK it would still be undetected!! Make sure you are referred to a surgeon who is good at laprascopic surgery - I know I was blessed to find a very knowledgeable and experienced surgeon - cecopexy is not a common surgery! Let me know how it goes - even if it is a few months from now!!
    geemel 10 Replies
    • September 3, 2009
    • 01:21 AM
    • 0
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  • I was recently diagnosed with a detached or mobile cecum. I was referred to a surgeon. Although I told him that I was in severe, unremitting pain he said it would do me more harm to attempt to repair it. He said that I should " just learn to live with it". I am seeking another opinion. I do not have some of the symptoms you mention, mostly just the pain. I will now ask for an opinion of a gasterentologist rather than a surgeon. Here in Canada, this could take months. Hope you're doing better.help My 17 yr old son was just diagnosed with this after trying unsuccessfully for 17 yrs to find out the reason for his pain and vomiting since birth. They are also telling Me that he has to just live with the pain... what can i do to help My son
    sheadog 1 Replies
    • October 18, 2010
    • 02:22 PM
    • 0
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  • help My 17 yr old son was just diagnosed with this after trying unsuccessfully for 17 yrs to find out the reason for his pain and vomiting since birth. They are also telling Me that he has to just live with the pain... what can i do to help My son I am so sorry to hear about your son. I would push your GI for a resolution especially if your son continues to have symptoms. I now realize how blessed I was to have a GI and surgeon that believed in this treatment. My digestion continues to be great and it is now over a year since the surgery. There is a risk that the adhesions to your abdomen may not take and I understood that risk, however the surgeon assured me that if that happened I would revert to loosing the ascending part of my colon which was the alternative treatment. I decided to take the risk of the cecopexy as it is not as invasive surgery for the removal of the ascending colon. I have to say had the cecopexy not been possible I would have happily had my ascending colon removed to get rid of the risk of a twisted colon later in life.I would think the younger you are the more chance that the cecopexy will work as you haven't had the colon moving around and stretching for years like I had. I wish your son the very best and hope that he can receive the care that he deserves.
    geemel 10 Replies
    • October 18, 2010
    • 04:51 PM
    • 0
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  • Thank you so much for your post! I am a 37-year-old female, and I am right in the middle of this mess. Thus far my diagnosis is: intermittent chronic cecal volvulus. Over the past few months I have had five instances of volvulus... 2 hospitalizations and confirmed, 2 suspected, and 1 misdiagnosed. 4 of the 5 episodes spontaineously released, and the 5th was released with a force-flush proceedure called a resuscitation. What a horrible night that was!Just this morning I had a barium enema. The radiologist did a terrible job of hiding his shock when he could not find my cecum at all. After rolling me this-way-and-that, it was finally located mid-abdomen, hiding behind my small intestine.One week prior, during a hospital admittance for SEVERE abdominal pain, a CT scan found my cecum in the upper-left quadrant of my abdomen. The sugeon is suggesting a full hemi-colectomy with resection. We are trying to hold off at least 3 weeks, until after the holidays. However, if my cecum and ascending colon should twist to volvulus again before 3 weeks is up, I will probably have to have emergency surgery.Reading your post gave me hope... and more questions.The surgeon said that the twisting had probably done damage to my cecum and ascending colon, and well as stretching it even further. But I am wondering now if that is something they can see with all these tests? Or is it something they need to get in there and find out. After seeing the actual mobility of my cecum during the barium enema this morning(they let me watch the screen)... I have at least a little hope that maybe laproscopic cecopexy could be enough for me. I mean, couldn't they see any damage, once they are inside... and then open me up only if they have to?Sorry, I know you are not a doctor, these questions are just swimming around in my head, and I won't talk to my surgeon until tomorrow!Of course I've been all over the internet with this. Sometimes it seems as though I am trying to piece together a puzzle. Most all that I find are medical discriptions and accounts... when all I really want is REAL experiences, from REAL people who have BEEN THERE.
    Anonymous 42,789 Replies
    • December 13, 2010
    • 06:21 PM
    • 0
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  • So sorry to hear about your terrible trauma! I can so appreciate the barium enema story - what should have taken 30 minutes took over 2 hours for me and it was an unpleasant experience!! The gastroenterologist wanted to do the full surgery like is suggested for you, but my surgeon was more conservative. I worked well with the surgeon and told him if he found my colon/cecum was worn out he could section the ascending colon and if he felt it was flexible and viable then he would do the cecopexy and stitch it down. He did the cecopexy - there is about a 20% failure rate for the cecopexy but for me 18 months later mine is still fine and my digestion so much improved. Write to me at geemel4848@gmail.com and I will give you my regular email address - I don't check the above email very often but I will check over the next few days and hopefully we can correspond - happy to be a sounding board!!
    geemel 10 Replies
    • December 16, 2010
    • 06:22 PM
    • 0
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  • Hi! 37-yr-old female again. Thought I'd post an update on my condition.Well, I made it the three weeks with no volvulus. As of now it has been almost five weeks.I saw the surgeon about a week ago, and this time something strange.... I've developed a "bulge" or "lump" in my abdomen - lower right quadrant, near to my navel. It's been there for at least three or four weeks. It doesn't hurt, and it's not huge or anything. I found it simply by looking down at my bare belly(I am definately lop-sided). When I told the surgeon, she palpated the area and said, "Oh yes, you do have something there". Then she immediately scheduled a colonoscopy, also recommending that I go under general anesthesia for the prodedure.Here's something I had never heard of... for the colonoscopy, they brought a "representative" into the room, so that he could be on hand to give them help on using a "new device". I wish I could remeber the name of it, but they described it as a dialator/balloon. They said they were using it because my ascending colon is stretched and damaged from the five instances of volvulus(complete twisting), and years of it being "floppy"(that's my surgeons term). They expected they would need it to dialate my colon so that they could see properly. Anyhow, my colonoscopy was Thursday. Today is Saturday, and I am very, very sore.The good folks at the hospital said that I should expect a phone call from the nurse on Friday, so that they could check on my condition, and give me an opportunity to ask any questions. I was still heavily sedated after the proceedure, and the only thing I remember clearly is that they said I had no tumors, no polyps.However, now my belly is all in knots.... the nurse from the colonoscopy never did call on Friday. Instead, I got a call from the surgeon's office, saying that she wants to see me "First thing on Monday".I'm trying hard not to make any assumptions. I can't afford to be out of work... for how long? I guess I'll know on Monday.
    Anonymous 42,789 Replies
    • January 29, 2011
    • 03:08 PM
    • 0
    Flag this Response
  • Hi! 37-yr-old female again. Thought I'd post an update on my condition.Well, I made it the three weeks with no volvulus. As of now it has been almost five weeks. I saw the surgeon about a week ago, and this time something strange.... I've developed a "bulge" or "lump" in my abdomen - lower right quadrant, near to my navel. It's been there for at least three or four weeks. It doesn't hurt, and it's not huge or anything. I found it simply by looking down at my bare belly(I am definately lop-sided). When I told the surgeon, she palpated the area and said, "Oh yes, you do have something there". Then she immediately scheduled a colonoscopy, also recommending that I go under general anesthesia for the prodedure. Here's something I had never heard of... for the colonoscopy, they brought a "representative" into the room, so that he could be on hand to give them help on using a "new device". I wish I could remeber the name of it, but they described it as a dialator/balloon. They said they were using it because my ascending colon is stretched and damaged from the five instances of volvulus(complete twisting), and years of it being "floppy"(that's my surgeons term). They expected they would need it to dialate my colon so that they could see properly. Anyhow, my colonoscopy was Thursday. Today is Saturday, and I am very, very sore.The good folks at the hospital said that I should expect a phone call from the nurse on Friday, so that they could check on my condition, and give me an opportunity to ask any questions. I was still heavily sedated after the proceedure, and the only thing I remember clearly is that they said I had no tumors, no polyps. However, now my belly is all in knots.... the nurse from the colonoscopy never did call on Friday. Instead, I got a call from the surgeon's office, saying that she wants to see me "First thing on Monday". I'm trying hard not to make any assumptions. I can't afford to be out of work... for how long? I guess I'll know on Monday.Sorry to hear about your continuing saga. Drop me a line at me gmail address listed above. Time off work depends on what kind of surgery you have - open up the abdomen or keyhole surgery. I had keyhole surgery and had I not had complications with my heart I would probably have been back at work withing 6 weeks. If they open up your abdomen it is likely to be a bit longer. I wasn't allowed to carry anything heavier than a a couple of pounds for the first 6 weeks. Depends what kind of job you have as well. Although I had a desk job and after four months sick leave (which is how long I was off work) I found it difficult as you are bent over your desk and I continued to be sensitive for a long time!Let me know how you go!
    geemel 10 Replies Flag this Response
  • I am a 64 yr old woman who was diagnosed with a detached cecum 2 yrs ago. After stabbing pain that brought me to my knees and a CT scan it showed my small intestines were all on the right side of my body. I have no idea when/where my cecum tore away. The GI doc said he would not operate unless/until it was an emergency situation. I don't get this at all. I do not understand why this can't be repaired. Right now I've taken laxative after laxative and am bloated and constipated and miserable
    Anonymous 1 Replies
    • August 15, 2014
    • 01:04 AM
    • 0
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  • I had a Cecopexy 9 months ago (I'm 36) and I would love to talk to you about how you are doing. I've had some issues and i can't find anyone else who has had one!
    Anonymous 1 Replies
    • September 13, 2014
    • 07:11 PM
    • 0
    Flag this Response
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