Skip to main content

Hey folks, I've been a member for a few years, since when my UC was bad but it has been fairly quiet for several years. So I don't have a jpouch. My colonoscopies show no worrisome features so far.
However, I have had an episodic problem with SEVERE abdominal pain that usually starts suddenly at night. It is accompanied by generalized distension and, once, by vomiting. These events have always resolved within several hours. This has occurred five times in ten years so it is not frequent. Going to the ER has only resulted in my wallet becoming lighter.
I had one of these episodes about three weeks ago and my GI had me get a CT scan last week. It started while I was in a recliner and after a severe coughing attack.
Back when my GI problems started, I had a pretty thorough workup (long story). Two tests, a small bowel enteroclysis and a small bowel series, showed my cecum as being in the right upper quadrant. No tests, either previous or subsequent have shown that. To me that suggests that my ascending colon, which should be attached to the abdominal wall, is not. I suspect that the episodes are related to this.
I guess I am hoping for feedback, maybe from Jan, and ideas about doctors in the Bay Area who might be good for evaluating this. Dr. Lawrence Yee has written about this problem, if in fact I have it. I live in Chico and it is not a good place for rare or complicated. Thanks all.
Dave
Original Post

Replies sorted oldest to newest

To quote the radiologists:
"The cecum is slightly higher than normal in the right upper quadrant."
And a different radiologist wrote:
"The cecum s positioned just above level of the right iliac crest. It is not positioned in the right upper quadrant."
This second guy is pretty funny as his description would place the cecum in the right upper quadrant, not the right lower quadrant where it belongs. It seems like they are having a bit of a spat. My case was controversial because it was post surgical and the surgeon in question was a small town big shot. That may help explain the nonsensical interchange.
I would imagine that yes, indeed your entire colon is attached to the posterior abdominal wall. The peritoneum, which also contains the nerves and blood vessels is attached along the entire length of the intestines. It is not distinct attachment points like tendons and ligaments. It is more like a veil that extends fan-like at the posterior wall. The intestines can move freely, to a point. So it is not unbelievable that the cecum might move out of normal placement.

Just having UC can cause lengthening of the colon and the loss of its usual shape (from the typical haustral marking to "lead pipe" appearance). This can also change how it moves.

These period "spells" you are having sound very much like a volvulus, which is torsion of the bowel (twisting). It causes severe pain and obstructive symptoms, but can resolve spontaneously. They tend to recur and if they persist, surgery becomes necessary. Try Googling the term and see if it does nor fit your pattern. Maybe in your case, it is not a complete volvulus. Here is one link to look at:
http://www.fascrs.org/physicia...06/colonic_volvulus/

I definitely would want to get to the bottom of this. Maybe you can go to Sacramento or Davis for more choice in doctors.

Also, to be in the right upper quadrant, it would be near the border of the liver. The top of your pelvis (iliac crest) is in the right lower quadrant. I would suspect that the first radiologist either misspoke in dictation, or the transcribing secretary misheard the dictation.
http://en.wikipedia.org/wiki/R...er_quadrant_(abdomen)

Jan Smiler
Jan, thank you for responding. It is my understanding that approximately 10% - 20% of the population has an ascending colon that is mobile, yet volvulus (twisting) and bascule (folding) are relatively rare. It seems like bascule is more likely to resolve spontaneously and less likely to cut off blood supply, causing gangrene. Bascule is what I suspect.
In my case, my iliac crests are very high and nearly touch the base of my ribs. If I feel that junture and reach around to the front of my body, the tops of my iliac crests are above my belly button. And the thing is that I have had subsequent CTs, X-Rays, and small bowel follow through and an unusual position of the cecum has never been noted other than these two occasions.
I see my GI on the 6th and will see what he has to say. He's a pretty good guy and seems to be a patient advocate.
I think the main point is that this is a recurring issue for you. It probably does not matter exactly where the cecum is any particular time, but the fact that it is moving in unusual ways, and probably will continue to do so, based on your history.

The big question to answer is whether you should opt for a resection at some point or just go for a total colectomy, since your underlying diagnosis is UC. This is why i suggested you go to Sacramento or Davis for more expert opinion, but San Francisco is a good choice too, if you wanted to travel that far.

I am not sure how many of those episodes I would be willing to put up with. I'd think that eventually, you'd wind up with a full-on volvulus, gangrene, and a surgical emergency.

Good luck and i hope you get some answers soon.

Jan Smiler
There is very little in the literature about non-emergency surgical interventions, probably because hemi-colectomy and colectomy are seen as drastic measures for something that MIGHT happen. Dr. Yee discusses cecopexy in the article you linked but mainly in terms of the challenges in doing it in emergency conditions. It might be a more viable option on a non-emergency basis.
Even if offered choices, provided that is what is going on, they are all hard ones.
My UC diagnosis seems a bit dubious. I had a period of about two years with cramping and diarrhea. I started on Asacol which helped with the diarrhea. Then my routine colonoscopy was scheduled so I went off Asacol for a few weeks prior in hope of a finding and became more symptomatic again. That colonoscopy revealed one area of inflamation and on that basis I got a diagnosis. That was 2009. I have never had bleeding, anemia, or weight loss. Subsequent colonoscopies have found nothing.
However, I have developed a milk allergy which my GI says is also indicative of UC and have gotten flares after colonoscopies. Now we double up my Asacol a few days before and after with good effect.
My suspicion is that the mobile cecum may have caused the symptoms and the inflamation may have been caused by all the stuff I take to keep Lyme disease at bay.
Since this is California, I am thinking about getting a marijuana prescription to see if It helps as I do have abdominal pain most days and still have unexpeced urgent bowel movements several times a month even though I eat carefully.
Well, things get more interesting. I saw my GI doc today. He said my cecum and ascending colon are mobile and I am at risk for volulus and that my episodes were possibly volvulus episodes that resolved spontaneously. I inquired about his confidence in the UC diagnosis and he was diplomatic noting that the diagnosis doc seemed very confident but that my two subsequent colonoscopies show no signs of UC, even at the microscopic level. I proposed my hypothesis that perhaps the bulk of my symptoms have been due to mobile cecum and the one area of inflamation found one time had some cause other than UC. He seemed intrigued by this idea. He gave me a Rx for an X-Ray to be kept in my wallet and used in the event of a sudden episode. He agreed that I have malrotation. I think I need a more expert opinion.
Jan, it has been a while. I had the serologies done and called back to learn the results. The nurse was somewhat vague and said that "one was positive." In the meantime there has been an interesting development. I started drinking an aloe vera drink over the course of each day and my daily pain has pretty much stopped. I have no explanation and it may very well be a coincidence but the day was February 24th. Since then I have has only momentary colicky pain maybe once a week for about five minutes.
I doubt the volvulus risk is decreased in any way but I am far more comfortable.

I guess I need to follow up on the serologies and the small bowel follow through that he ordered. On that test they found my cecum next to my sternum. They were literally pushing the flouroscopy ball up under my rib cage.

Another resource you may be interested in is a FaceBook page called Awareness for Malrotation [sic].
Well, I followed up. The small bowel follow through revealed probable malrotation. The IBD serologies were as follows:
P-ANCA Titer Negative
C-ANCA Titer Negative
ATYPICAL C-ANCA Titer Negative
MYELOPEROXIDASE AB Negative

SACCHAROMYCES CER IGG Positive 44.2
SACCHAROMYCES CER IGA Negative 12.3

My GI ordered a pill endoscopy to r/o Crohn's but insurance turned it down. They are probably arguing about it.

Can anyone help me interpret this? Thanks.
Dave
Based on the one positive result you have, this would be suggestive of Crohn's disease over UC. However, the sensitivity is not very good, and you can have positive results with other diseases or in the healthy population, so it is not diagnostic. Actually, none of these tests are diagnostic, but are useful for helping to tip the scales one way or the other when there is doubt.
http://www.clinlabnavigator.co...y-bowel-disease.html

Have you had an upper endoscopy? If not, I would suggest it. If that fails to provide useful information, the insurance provider might be willing to cover camera pill endoscopy. Yes, I know it is more expensive in the long run, but they usually have their approval protocols to follow. So barring any explanation by your doctor for the need, they probably would not budge.

Obviously, it makes sense to know if you have IBD, so you can treat it appropriately.

Jan Smiler
I consulted Dr. Laurence Yee in San Francisco. He is the surgeon who did member Cara Binder's j pouch surgery. She is an anesthesiologist and wrote very positively about him. He is a colorectal and general surgeon.
He agrees with my current GI that I probably don't have UC and doesn't think I have Crohn's either. Instead, he thinks the mobile cecum is causing folding of the colon causing intermittent obstruction. This is what I have thought most of the time. He is going to do a laparascopic exploration and cecopexy in ten days. I will update afterwards.
Surgery was Monday. He examined my entire intestinal system and found several adhesions, one of which was causing my ascending colon to twist on its axis. He is pretty confident this was causing my problems. I was able to be discharged about twenty four hours after admission and have been home since yesterday. I'm sore but have no cramping pain. I've passed gas but have not yet had a bowel movement. That seems kind of normal to me.
Regardless of the outcome, I have to say that Dr. Yee is one of the kindest and most respectful physicians I have met.
Great news! It is always nice to know that it was something simple and not some chronic disease. The journey can be painstaking sometimes... Of course, this does not mean you cannot develop some chronic disease later.

The question remains: What caused these problematic adhesions? Unless you had prior abdominal surgery or intra-abdominal infection, there should not be spontaneous adhesions.

Let's hope this is the end of your woes!

Jan Smiler

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×