Two Months After Surgery and Crohn's Re-diagnosis

I thought I would give people an update as to inform those going into surgery what may happen if their biopsies turn up as Crohn's.

In January, I had what was supposed to be Step 1 of 3 for a j-pouch. The biopsy was reviewed by both my surgeon and GI and they both agree that it is definitely Crohn's even though my small intestine and ileum look perfect. I forgot the terminology he used but basically the architecture and depth of the ulcers were consistent with Crohn's. Both of them made remarks at how remarkably ugly my colon was. I kind of want to see the pictures... Anyways, my surgeon was open to trying a j-pouch if I wanted to pursue that, but my GI was more hesitant.

I've been living with my end ileostomy for 10 weeks now and I still love it! I have no symptoms. I've only had one leak and it was completely my laziness's fault. I only have to empty the bag 3-4 times a day. I can eat whatever I want. I can do anything that I could before I got sick. I also found a cute bag and wafer that work well for me. I definitely recommend getting free samples from all of the companies if you end up with an ostomy because there are so many types out there. I have decided that I am definitely sticking with the ileostomy. I have already pooped enough to last a lifetime! My husband and I also want to start a family in the next year. My GI assured me that my pregnancy will be completely normal with a stoma especially now that I am off meds, which is also great. I will be having my rectal cuff removed once I am done having kids since that surgery could impact fertility. We will be monitoring the rectal cuff and small intestine for any inflammation or cancerous cells about once a year, but no more immunosuppressants or infusions or colostomy preps for now!

Before I had surgery, I had viewed a Crohn's diagnosis and permanent ileostomy as the absolute worst case scenario, so I just wanted to let people know that it's actually not too bad! I'm also very glad that I had the 3-step, so I have my whole small intestine to work with. I would definitely be wary of recommending 2-step, now that I know how you could have Crohn's but present exactly like UC until the final biopsy. I'm just glad to feel normal and healthy again for the low, low price of having a little bag glued to my belly!

Great all is going well for you!!!
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That's great news. I am excited for you to have your whole life ahead, while healthy. It's a good feeling. I didn't think life with the end ileo was too bad either, it's actually quite easy to manage, and you're right, better to find out when you're on course with a 3 step.

iPoop said...
Happy you're feeling better, and enjoying life. Nice to be rid of the evil, large intestine that caused us nothing but troubles.
We've had posters keep their end-ileo and be perfectly happy with it, pluot comes to mind but I am sure there's others. Given the Crohn's, it makes perfect sense to not risk the j-pouch.

If I recall correctly, Pluot got her jpouch and went on to med school with plans of becoming a GI. We had the same surgeon around the same time.

I think EvaLou(?) decided to go with an end ileo when she had an iffy diagnosis. She seemed really happy with her decision too.

Yes, I do realize that since it is Crohn's that the inflammation can come back elsewhere and we will be monitoring it to see if I need to be back on meds. I have faith that we will catch it much sooner and there will be more medications available in the future. I'm just trying not to worry too much about that since it's also possible that it doesn't. I have never shown any inflammation in the 4 years that I have been severely flaring, so I hope that means something.

It’s sounds like you have made a wise decision. If given all those facts I too would stay with the end ileostomy. And only one leak all these months that’s fantastic