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Don't know what I have post surgery!

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Posted 10/21/2010 10:38 PM (GMT 0)
 

Hi,

To catch you up to speed since I am new to the Ostomy World:

I had ulcerative colitis diagnosed in 2002, did all the meds, and just had my colon removed about a month ago.

 

When the surgeon removed the colon, it totally looked like I had Chrons.  The inflammation was in the colon near the small intestine and not any other place.  It looked like Chrons, he said, and the pathologist said that it was granulomous, and was Chrons.

Did a Prometheus test for GI, and he said that it came back UC.

Yeah, so now no one quite knows what to do.

They are going to do a second surgery to remove the loop ileostomy.  I still have my rectum, to which the end of the small intestine is connected.

In the meantime, I developed an infection in the wound that has now tunneled, where they removed the colon, a hernia and my appendix, as I had acute appendicitis at the time of surgery. I am on a wound vac, happily, as the dressing changes were a nightmare.

Has anyone gone through this struggle of diagnosis? It should affect the surgery to come, but I want to hang onto my rectum just in case at this point.

Any suggestions for healing a nasty wound?

On the bright side, the ostomy is going well.   Once I discovered that I needed a convex barrier, life was better.

Thanks,

Dixie

Posted 10/21/2010 10:52 PM (GMT 0)
I'm sorry that I don't have much advice about wounds, nut I can speak to the Crohn's vs colitis issue. I was diagnosed in 2000 with UC, and then a few years later my GI started referring to it as Crohn's colitis (with no explanation. I was young, so I didn't ask questions. I now believe she was a sucky doctor).

I got a new GI, and he considered it Crohn's with a 15% chance of UC. After having my colon removed, he is still not sure which it is. I just went with the safe bet and got a permanent ileo. I am happy with my decision.
Posted 10/22/2010 1:56 AM (GMT 0)
I'm going through the same debate. The pathologist that looked at the chunk of my colon said something to the effect of it being consistent with UC but blah blah blah, I'm not sure. lol My surgeon is pretty positive it is UC, but I'm going to have more tests done soon to rule on Chron's. The only reason they are even iffy about it is because my small intestines looked irritated during the surgery, but according to my surgeon, it's most likely because of all the infection and fecal matter that were swimming around in my abdomen since my bowl had perforated.

I don't know anything about the wound stitch though, sorry :(

I wish you luck in your diagnosis runaround!
Posted 10/22/2010 10:22 AM (GMT 0)
I think biopsies are more accurate than the Prometheus test...but I'm not a doc! It's not unheard of to have Crohn's Collitis.

When you say 'tunnel' do you mean fistula? A wound vac is amazing and will do a great job closing the wound:) They're just bulky but so worth it!!

Will you be staying on meds since you still have your rectum?
Posted 10/22/2010 1:55 PM (GMT 0)
I'd toss the Prometheus test results. They don't have a good track record for accuracy and major players, like the Cleveland Clinic, no longer look at Prometheus test results when evaluating an IBD patient. My own surgeon had some not-so-nice things to say about the science behind Prometheus and he is not only a surgeon but a respected researcher so I tend to trust his opinions. As for your diagnosis I would lean towards Crohn's but I'm no expert.

Sue
Posted 12/8/2010 6:25 PM (GMT 0)
Another update:

I had the second surgery, where they did the take down. Part of the reason I was so concerned about diagnosis, is that I still have a rectum. If it is UC, they would remove that too. Ultimately, I went with the surgeon (who says Chrons) and left the rectum in. They reconnected my small intestine and removed my ileostomy, which I enjoy!
I was discharged from the hospital at 6 pm, and started vomiting as soon as I got home. Finally got Dr on call at 2 am, and was told to go to ER, which I did when I felt I could travel at 9 am.
I was admitted and put on bowel rest, and stayed 4 days until my nausea was under control. They had me taking levaquin and flagyl through IV, and then orally at home. The antibiotics gave me horrible diaarhea, which is still continuing.
I saw my surgeon a few days ago, and he thinks it is c-diff (no odor, though). So, I'm off to do a stool sample tomorrow. I'm wondering if it might be a flare?
Posted 12/8/2010 6:27 PM (GMT 0)
I forgot to mention that I'm still using a wound vac, which is working well. My ostomy site is about an inch deep now, which is great. My other wound is also progressing, but not as quickly.

The tunneling is where the wound basically expands in one direction that looks like a tunnel. It can happen with any wound on any person. Lucky me! But, that is healing too, so I am grateful.
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