Ok, I'm new to the board so please bare with me. I've been cruising posts for answers for weeks now but this is a first time post. I know we try to keep the word count down but I'll describe my history briefly and then get to the problem:

First presented at 13yo (now 27) long story short i spent 67 days in CHOP in Philadelphia with total systemic 'IBD' trying all the medications you're all familiar with (roids, cyclosporin, and everything in between) and eventually had a total colectomy when all medical options had failed. Post operative pathology confirmed UC. I lived with the ostomy for two years until my body had healed and regenerated enough to have the J-Pouch and then the takedown 3-4 months later. This puts us in the year 1995.

After that it was the usual post operative complication problems of retraining my bowel: frequent bowl movements, on and off dehydration, night incontinence, etc. I stabilized around 1998-1999 and have been 'normal' since. Bowl movements in the 3-5 a day range, intermittent pouchitis on and off (once a year or so) that always responded with either a course of flagyl or cipro or both and generally lived an unaffected life. The last year or so I've been having more frequent attacks of pouchitis that were harder to get rid of. Longer and longer courses of the antibiotics but still able to live a relatively normal life... Until about 4-5 weeks ago, and here's where i need the immediate help/advice from all you wonderful people.

We'll say 5 weeks ago i started having a problem that presented unlike anything I've experienced before. A half hour after eating anything i would get serious pain in my upper abdomen along the bottom of my rib cage and back. It would persist for a half an hour and eventually dissipate until general aching along the center portion of my abdomen, around my scar line near my slit of a belly button. This eventually developed into general 24 hour a day somewhat cramp like feelings all over my abs and back, but the worst is half hour after i eat or laying down at night. Heat helps (heating pad - hot shower), but i went from being able to tolerate soft foods, to no foods only liquids. Then that went to only being able to tolerate twice daily ensure or instant breakfast to now only being able to tolerate clears and various juices. I had enough with my local GI guy and have been seeing Dr's at the university of penn in Philly that have been testing the hell out of me. The CT scan i had yesterday showed 'soft tissue' surrounding my mesenteric vein restricting bloodflow with a blood clot in the vessel. I go tomorrow for upper and lower endoscopies and then a direct admission afterward into the hospital to start blood thinners and talk about the ricks associated with biopsying this area. They don't think it'll progress in the next 24 hours but still kinda scary.

Anyone ever experience or heard anything like this in your travels? I've had problems with prolapsing on and off for many years, but its only usually when I'm experiencing pouchiitis and stops soon after the inflation dies down. Again sorry for the length, but any help you can provide would be appreciated. The CT result was not what my Dr. or I expected.

Thanks for all the input or support
Todd

This message has been edited. Last edited by: CNJTodd,

Hi Todd,

I don't see any correlation between the two. You've been asymptomatic for 12 years. I'm curious what your endoscopies revealed. Keep us posted.

Johnny

My first guess would have been gallbladder, but the mesenteric vein thrombosis is a totally different thing. Did you know that clotting disorders are associated with IBD? Perhaps you should be worked up for that. You may well need long term anticoagulation therapy. This clot may have been brewing for quite some time, but did not cause symptoms until it became large enough to occlude.

http://www.blackwell-synergy.com/doi/pdf/10.1111/j.1572-0241.2006.00943.x

Jan

Jan, Johnny thanks for the info and wishes:

Still at Penn, actually in my bed resting semi-comfortably thanks to the 4 of morphine i get every 3-4 hours. I had a flex sig and an EGD on the 21st that showed the pouch in good shape (thank God) along with the rest of the GI track. One good thing at least.

I knew about the arthritis, liver disease and glaucoma but I hadn't known about the clotting propensity. The paper you linked to (thank you) was basically summarized by the hematologists when they first came to check me out - which is comforting. Thankfully the clot isn't occluding much and the IV heprin should keep it that way. They're talking 6 month treatment on blood thinners with periodic followup to monitor the clot.

The bigger issue and most of the pain is coming from the soft tissue mass that's on/near the vein. I was supposed to have an EUS Friday but couldn't get an anesthesiologist pinned down. Apparently i was half jumping off the table for the EGD even near max does of fentanyl and versed and they don't want me moving around when they try to biopsy. Looking like I'll have it done tomorrow (monday the 24th). Every service is holding their opinions until they can get a chunk of it down to the lab. They're pretty confident they can get to it with an EUS but if they can't its open biopsy time.

It's weird, but apparently (other then possibly the propensity to clot) this might not have anything to do with UC or really the GI tract in general. I guess I'm just a 'lucky' kind of person. I'm a little worried about another surgery or two and it's effects on my pouch or the increased risk for adhesions etc but I guess I'll cross that bridge after we get this biopsied. Has anybody else had unrelated abdominal surgeries and had it effect their pouches?

Thanks for the info and the support
Todd

PS - they have in-room wireless net access here, i highly recommend finding a facility with the same. Frankly having my computer makes this so much easier to deal with. I highly recommend PENN for anyone in the Philadelphia on NJ area. From the lowliest environmental worker on through the most senior attendings everyone I've run across has been knowledgeable, efficient and genuinely interested in my health and well being. It's an EXTREMELY comforting situation to be in when your sick and scared and looking for answers. Watch, now that i said that the next person i get will be a total A-Hole but at least i know they'll be a competent A-hole.

Hi Todd,

Thanks for the update. I can see there's still a ways to go with your situation. Regarding the blood thinners, One of the precautions regards Vitamin E supplements, fish oil or flaxseed oil supplements. When you are on blood thinning medication you should not take Vitamin E supplents or flaxseed oil/ fish oil supplements due to the the risk of thinning the blood too much. Certainly discuss this with your doctor if you are taking any over the counter pain meds, herbal remedies.

Good luck with everything.

Johnny

Hi Todd,
Like Jan said, blood clots are associated with IBD; infact having a high platelet count, often seen with inflammation and certainly with IBD, is also associated with IBD and thus the bood clots. Infact, high platelet counts oorelate to ongoing inflammation and often come down as our disease, Colitis, settles down with medication or simply goes into spontaneous remission.
DVT's are life threatening but once you are heparinized, you are safe. Then you will be started on blood thinners like Coumadin and maintained on them for at least six months.
I had a DVT in my Femoral vein many years before I was diagnosed with UC, and then of-course my Docs. said no wonder. But at the time noone could find any cause for the DVT and it was all very scary because some of the causes of spontaneous DVT are quite unpleasant to say the least and I went thru' all kinds of tests.
Hope all goes well with you,
Rani

Todd,

I developed ischemic colitis from "malformed" veins around my colon. I had several clots and eventually had to have the sigmoid colon removed. Before I was properly diagnosed, (they thought is was ulcerative cloitis), I was sent home from the hospital and then had to go to the ER after I had a big bleed from it. It was pretty scary. Your case sounds a bit different and it is good they already know what they are dealing with. Take care.

Thanks everyone for all the info and feedback -

Just a quick updated:
It's 7/1 and I'm still in PENN since i need morphine, augmented recently with oxycodone, to deal with the pain. Thanks to the pain meds and a good dietitian I've been able to stabilize my weight loss and it hasn't changed in the last couple of days.

Had an abdominal MRI, tried to biopsy the 'soft tissue density' with a UHS to no avail. Body radiology/IR says its to dangerous for them to try and since my symptoms fit lymphoma the GI, oncologists and surgeons all agree a biopsy is necessary. I go in tomorrow for a surgical biopsy to grab some of the lymph nodes and questionable tissue. Hopefully it'll be just a standard upper-midline incision and a couple hours under general anesthesia, but it'll all depend on what it looks like on the inside from the previous surgeries. Crossing my fingers for no serious complications but it's a little scary since this'll be my forth major abdominal surgery in 12 years. The 'density' also happens to be right around the SMV and SMA. Dr. Morris, who is apparently THE guy for GI surgery here is doing it himself which is a little comforting.

Two tentative diagnoses are lymphoma or sclerosing mesenteritis with heavy emphasis on the later. Nobody really thinks its lymphomia but the only way to rule it out is with a biopsy.

So, anybody know anything about probabilities of post operative complications from the surgery?
Anybody know anything about the apparently rare sclerosing mesenteritis?
Anybody have anything done by Dr. Morris at Penn?

Todd

Todd,
Just a suggestion.....post your last message under a new heading so that maybe someone will read it and have an answer for you.
Hope you get good news tomorrow and all goes well.
Susan