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FAP patient, IBS, desmoids ???

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Old 01-31-2007, 05:10 PM   #1
Join Date: Jan 2007
Location: USA
Posts: 3
joyous19 HB User
Question FAP patient, IBS, desmoids ???

I was diagnosed with FAP when I was 3 years old and had a full colectomy with a J-pouch at that time. I went for a long time without any severe problems. But about a year and a half ago I began having constant abdominal pain and nausea, as well as a change in "bowel movements" (technically that's not right, since I don't have a bowel!). I immediately went to my GI surgeon who will see me for check-ups. He sent me for a CT scan but found no obstruction, although there was a "mass" near my right ovary. So, I was told to see a GYN. I had laproscopic surgery to remove the "mass" - we had been told it was probably a cyst, but in the end my GYN said he never even saw my ovary because I had so much scar tissue in my abdomen. After the surgery, I still had the same problems, so I went back to my GI who suggested it was adhesions and I could have surgery to remove them, even though they always grow back and surgery is the culprit. I had the surgery and was much better afterwards.

Now, a year and a half later, I am experiencing problems again. I had some last semester, but none that persisted over a period of time. Since the beginning of this month, I have been experiencing some pain, but mostly pressure, bloating, change in bowel movements (even more than usual), sometimes it feels like I need to go but I can't or I can only go a little bit, some nausea, loss of appetite, etc. My GI surgeon says it is IBS, even though he knows my history and has done nothing to rule anything else out. Is this possible even though I don't have a colon? My doctor says that because my small intestine has taken on the responsibilities of the large, such a syndrome can manifest in my small intestine. Has anyone heard of anyone else with IBS in their small intestine?

I've noticed a persistent pressure (sometimes pain) in a specific spot of my abdomen (I can also feel it in my back). It seems to be worse the longer I sit or bend over, etc. I have noticed that if I push down on this area, it hurts. I have a feeling that something is there, perhaps adhesions pulling on my intestine or even...a desmoid tumor? I am also feeling a pain/pressure on my left leg (the side of the spot) where it joins with my hip and under my ribs above the spot. Could this be caused by a desmoid tumor? Anyone have experience with those? I've been reading about them and it seems possible. I have been told that I have many ovarian cysts, like the last one, but even my GYN says he doesn't even know that these masses are actually cysts. Could I have multiple desmoids?

I am going to see another GI this week, hopefully he will have some more answers. I just wanted to know if anyone had personal experience or knows anymore about this stuff. One of the most frustrating things is not ever being able to really KNOW...which seems to be the way intestinal stuff works.

Last edited by joyous19; 01-31-2007 at 05:12 PM.

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