Biopsy results came back as Crohn's

I had my ileostomy surgery on the 11th and we finally got the biopsy results back. I am just shocked. I do not now nor have ever had any inflammation anywhere other than my colon or had any other Crohn's symptoms. My surgeon says we should take a step back and take some time to think about what we want to proceed with. He has has patients with Crohn's pathology results but never any inflammation in the small intestine that have gone on to have j pouches successfully, but now I have no idea what will happen next. I just thought I was finally free of this disease and now being told it could come back at any time is really a punch to the gut (more so than surgery hah). I'm just feeling the lowest as I have since my UC diagnosis after I finally felt so much better from my surgery.

After my colectomy I was told mine was definitely UC and from the first day I had chronic pouchitis.

I am really happy with my pouch, I need to treat it but living with it is so much better than UC. I use Stelara and just had a scope with awesome results (recently made a thread about it).

I think it depends how you feel about your ostomy. You probably have about 2 years before you have to make a decision, otherwise your sphincter muscles start to atrophy and you run a risk of leakage with a j-pouch.

At least your surgeon is willing to give you the opportunity to have the j-pouch if you choose to go that route. I go to Mount Sinai for my pouch care.

Biologicals stopped working for me. I did great on Remicade but got serum sickness from it. Humira did not work, neither did Simponi or Cimzia.

I haven't seen too many people lose their pouches due to pouchitis, it is usually due to a construction issue of the pouch.

Stelara is a totally different mechanism than all of the biologicals for UC/CD. I haven't tried Entyvio.

There are new meds in the pipeline.

If you go to a permanent ostomy (which you would need to do) that is a big surgery too but less in the reproductive areas. It's a big recovery and so is the jpouch construction. The 3rd surgery (takedown) is a 30-45 minute minor surgery.

I could probably have been happy to keep an ostomy but a j-pouch is probably easier for me. each has their pros and cons. It is still so much better than living with UC.

If you’re going to make decision then you might want to head over to jpouch.org and read some of the archives and post some questions.

Remember that people posting on the internet usually are having problems and the people that are doing well are out living their lives not posting too much.

If you want a 'pick me up' I would look into stories of people living symptom-free for decades with Crohn's once the colon was removed. I know one personally.

I have had an endoscopy and a MRE done which have both found no inflammation anywhere above the colon. I'm wondering how accurate these biopsies are. Although maybe it always was Crohn's colitis. My disease progressed very quickly and I was diagnosed when I already had severe pancolitis. I haven't had a chance to talk to my GI yet because my surgeon told me the results first, so I just have so many questions. I really do hope that it never spreads further. I know these diseases are so unpredictable but hopefully if I was severely flaring for 3.5 years without it spreading, I can have some hope that it will be fine for some time. Maybe medication will work well if I catch the inflammation while it's still mild.

I will need to talk to my GI more and do some independent research, but the more I think about it, the more I lean to a permanent ileostomy. My only objections to it seem fairly superficial. I have been doing very well with it so far. No leaks or irritation. I only have to empty it 4-5 times a day. It's really not noticeable under most of my clothing. My husband is also completely unfazed by it (he's the best). But I'm really going to miss just looking down and seeing just my belly. I'm going to be extremely self conscious in bathing suits (RIP my cute bikinis). I'm terrified to go though airport security as they have already embarrassed me by pulling up my shirt and exposing the top of my depends on one occasion. Carrying around all of the supplies in case of a leak seems like a pain. At the end of the day though, all of the negatives seem like things I can get over. I will spend a lot of time thinking this through. I'm looking for a house and have a big professional exam coming up this spring, so maybe a break in the surgeries will do me well. I'm just going to try to focus on how great I feel right now and my newfound freedom.

I did not realize that I would need another surgery to make the ileostomy permanent. Would that be to remove the rectal stump? Is that necessary if I'm having no issues?

That makes sense. I didn't think about the cancer possibility. My grandmother is currently battling colon cancer, so I definitely want to be very careful with that. I did not get a second opinion on the biopsy yet. I'll definitely talk to my GI about that.

And you're right about the bikini thing. The more I deal with this illness, the less I care about what strangers think of me. If I feel cute in my bikini, I shouldn't let anyone stop me. Sometimes I get so self conscious of people thinking I'm weak and sickly, but we're not weak, we are survivors and a whole lot tougher than anyone that would judge us.

I hear that on the housing market. It's definitely not the best time right now here, but we have just outgrown our apartment and any rental that fits our needs is just ridiculously expensive. We're definitely getting a smaller home that is well within our budget and will have a large down payment, so even if there is a market crash soon, we should be fine to wait it out. Thanks for the warning though!

When the colon is removed and the tissue is sent to pathology, it is a much more thorough process than when just biopsies are sent. I would consider the pathology report on the removed colon to be fairly definitive.

Hi i have a question for keith and partlycloudy....because i may need surgery at some point in the (not too distant) future. Can you remember if your CRP values were typically high prior to surgery? Am asking because although everything in my biopsies and scopes and symptoms has been consistent with UC, there are several people in my family with crohns and other autoimmune issues, which makes me wonder if surgery would reveal a misdiagnosis. However i always have a low CRP even with severe proctosigmoiditis whereas my siblings with crohns have high CRPs. Also did you always have pancolitis or was it sometimes left sided? I hope you don't mind me asking these questions and i hope you both continue to feel great for a long time. Thanks

PD,

My CRP were low for most of my flare but as soon as I started reducing my meds prior to surgery then it started to rise.

My sed rate the entire time was always elevated.

I always had pancolitis with backwash ileus. They always thought that I had UC even after my colectomy and bioposies. My surgeon is a well known Crohns surgeon with a crohns surgical procedure named after him, he said that he was pretty confident that I had UC after he removed my colon.

I was about to get a colectomy last year until I developed a peri anal abscess. Then they told me that there was no guarantee I could ever get j-pouch surgery. They encouraged me to get a colectomy, regardless. They said that my colon was killing me so no matter what happened next it had to go. But I wasn't willing to live with a bag. Before getting surgery I wanted to know whether I had Crohn's or UC so I knew fully what I was getting myself into.

Turns out I have indeterminate colitis. They can't tell me if I have Crohn's or UC. So I'm not getting surgery.

Even if I knew it was Crohn's before surgery, I would have still gone through with it. It all depends on your quality of life though. It was just so bad. I had gotten so used to being sick that I forgot how being healthy felt. I was in constant mild pain, but didn't even realize until I had surgery and it was gone. I spent my life planning around bathrooms and scheduling when and how much I could eat and drink. I was not 100% at work because I would miss parts of meetings and my concentration and energy levels were so low. I have no idea where you are at with your quality of life, but mine was made much better even if I stick with the ileostomy. The bag has been very good for me, much better than I thought it would be. It's easy to conceal, easy to empty (only 4-5 times a day for me), and has caused me no leaks or irritation. Also, you could likely find a surgeon willing to give you a j pouch if you have had no inflammation outside of the colon. But I understand that surgery is a very personal choice and definitely get why someone would not want it.