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Anyone have doubt about UC or Crohn's before surgery

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Ulcerative Colitis
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slyfoxman7
New Member
Joined : Apr 2014
Posts : 7
Posted 2/17/2020 9:28 AM (GMT -7)
Here's my story and current predicament:

I’ve had colonic IBD for 23 years and finally scheduled surgery for next week. Even though I'm not at my worst, I've had it with the anemia, fatigue, frequency urgency, etc.. Not to mention annual colonoscopies dues to cancer risk which worry me quite a lot. The interesting part of my story is my first doctor classified me as Crohn’s and my second doctor has me now classified as UC. There are obviously much different surgical results based on what I truly have. I've never had inflammation in the small bowel and it seems to follow the standard UC pattern of more severe inflammation starting in the rectum and diminishing as it goes along. But I do seem to have some more typical Crohn's manifestations mainly less rectal bleeding and endoscopically patchy colitis in areas. Along with more typical UC findings of pseudopolyps, and never any fistulas, fissures, strictures, abscesses or cobblestone appearance.

I have an experienced surgeon who knew about my previous Crohn's diagnosis and he was all set for the two stage surgery where he builds the pouch in stage 1 and it wasn't until I brought up how I had some doubt about it truly being UC where he said we could go the three stage route and use the pathology of the colon after stage 1 to determine the next step. What's interesting is he said if we did the two stage and the pathology showed Crohn's he would still connect the jpouch since it had already been made. I know some specialized centers allow special cases of Crohn's disease (no small bowel or perianal disease) to try for a jpouch and I think I would have sought them out anyway if I was told I wasn't a jpouch candidate at my current hospital.

But anyway he left the ultimate decision up to me (I'm terrible at decisions) and gave me up to the day of the surgery to decide which route to take. I would love to avoid three surgeries and since I had the idea of trying the pouch even if it was Crohn's, I think I might have a unique opportunity here if I go with two surgeries. On the other hand I heard having a pouch when it is actually a crohn's diagnosis can be hell and reverting to ileostomy would mean less small bowel to work with.

Sorry for the length of this but I was just wondering if anyone else was faced with a similar predicament and what they chose.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 922
Posted 2/17/2020 3:25 PM (GMT -7)
Hi I'm sorry to hear about your predicament. I have very classic UC (in terms of symptoms and pathology) and this time last year I was looking at surgery; when I had a consult with a surgeon he simply told me it would be a 3 step surgery. As I understand it, one reason for this would be to give the option of stopping after step 1. So in your shoes I would also choose 3 steps, because you don't know what you might find once the colon is out, and at least that way you keep your options open.
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 5857
Posted 2/17/2020 5:07 PM (GMT -7)
Are you willing to take medicine after your surgeries?

I have a jpouch with crohns (Chronic pouchitis) and for me it’s not really a big deal except that I have to take a shot every 8 weeks. I took antibiotics for 3 years and they worked but I did not enjoy being on them for pouchitis/crohns.

I don’t want to minimize it but my pouchitis responds much better to medication than my UC/CD ever did.

Everyone was as certain as they could be that I had UC but I developed chronic pouchitis the day that I was reconnected.

Am I disappointed? Not really, things are good and it’s sooo much better than living with my diseased colon.

I had a 3-step surgery and they biopsied my removed colon, my two GIs thought that I had UC, my surgeon is highly regarded with a crohns surgical procedure named after him and is the chief surgeon at a major hospital in NYC. Every step of the way they all told me that I had UC. Go figure.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17750
Posted 2/18/2020 7:47 AM (GMT -7)
I had three steps and I had a fairly typical case of UC. Early on, there was some mention of patchy inflammation, but i think that was due to rectal meds and not the appearance of the inflammation. Three steps was not what I wanted, but at the end of the day, it wasn't the end of the world. It's been about 5 years since my final step and I am doing fantastically well. I think that's what you should focus on - the end result. I personally would want to eliminate the possibility of Crohn's before going forward with a pouch. As you said, you do have less to work with if you have a pouch at any point and less means going more and faster transit. I would have probably kept my ileo over getting a pouch if I were dealing with Crohn's and drugs. For me, being off drugs and rx dependency was a huge factor in my decision to have surgery. Have you had an upper scope? I did an MRE prior to surgery and my upper bowel was clear of everything. it's not 100% of course, but it is another piece of the puzzle. Have you had the P-ANCA testing to see where you stand? Mine was very strongly UC.
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buckeyecrohnie
Regular Member
Joined : Apr 2014
Posts : 114
Posted 2/18/2020 7:50 AM (GMT -7)
I've had my Jpouch for 5 years now, and during my recent annual scope they found what they think is Crohn's disease. I am hoping I am like ks1905 and it is just a chronic pouchitis. They put me on Cipro for 5 days and I was a whole lot better functioning. I have a follow up with my GI in a few weeks to determine the next steps.

They originally thought I had Crohn's but then changed it to UC and told me I needed surgery. I feel like it doesn't matter now. I do not regret having had the surgery and will do whatever possible to keep my Jpouch as long as possible. My Jpouch is a lot better than dealing with UC. I know I can live a good life with an ostomy but I would have to get mentally prepared for that (again).
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 5857
Posted 2/18/2020 9:04 AM (GMT -7)
I personally liked having a 3-step surgery. I was in real bad shape going into my colectomy (it's not a huge surgery) and I know that I was able to recover a lot quicker because of the 3-steps. The j-pouch creation is the largest part of this process so you'll be combining the colectomy with your j-pouch creation if you go with a two step surgery.

The take-down surgery is a minor surgery which takes about 45 minutes, most of it is just checking over their work with a scope.

I have ulcers at the inlet of my jpouch so my GI calls it crohns, it just made getting Stelara a few years ago much easier to get while it was only approved for CD. I had a scope last year and after being on Stelara for about 3 years and posted a thread about it. https://www.healingwell.com/community/default.aspx?f=38&m=4098033

I would reference you to my previous post - are you willing to take medicine if necessary for your j-pouch?

Depending on what I eat I will empty my pouch 1-5 times a day without any urgency. It's probably the same frequency as my ostomy.
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