colitis to Crohn's - what's up with that?

The change in diagnosis likely stems from inflammation being seen further up, in the ileum. Most good GIs when they scope will peek above the Pouch and see if there is inflammation in the neoterminal ileum and, if so, the diagnosis is usually changed to Crohn’s. But it really doesn’t mean anything because the inflammation has to be treated wherever it is.

Regardless of where the inflammation is, either it can be effectively treated or not. If you are having pain, t’s not being effectively treated. I am in the same boat with diagnosis change but my treatment (Remicade) is proving effective. 

It may take a while for the Stelara to turn things around. There isn’t a snap the fingers and be well solution but it sounds like it could be a step in the right direction. Good luck.

Sometimes the original diagnosis of UC was incorrect, which doesn’t necessarily mean that the doc did anything wrong: it can be very difficult (or even impossible) to tell whether you have UC or Crohn’s. In my case they never could all agree about it. Sometimes the new assertion of Crohn’s may be sketchy or incorrect: some (rare) findings are “proof” of Crohn’s, but most common findings are just more evidence one way or the other. The diagnosis is mainly useful to help select treatments most likely to help. Trying something new based on revised information makes good sense. If you need quicker relief sometimes a *short* course of steroids can help get things reasonable for long enough for the new long-term treatment to start to work. If the problems are all very near the pouch then a smaller dose of steroid taken as an enema or rectal foam may do the job with less potential for side effects. Good luck!

1) For me it's been the same. I have been treated for Colitis for the most time but then I got fistulas and abscesses and the diagnosis changed to Crohn. But for me it didn't change anything actually as it really doesn't matter that much, I guess. You have to feel better, no matter what your desease's name is.

2) I started with Stelara about five months ago. After the first dose (390mg intravenous) it helped me feel better within four weeks so something like that. It got better over time. It also helped me reduce my daily bowel movements from about 6-7 to 4-5. Didn't have any side effects the first three treatments but the fourth was kinda different as I was feeling sick and feeling a bit fuzzy in my head. This "fuzziness" has been the case for quite some while but after the last application it is a bit worse. Nevertheless way better than the rectal pain and over all not too bad, neither.

3) Can't tell you anything about it but every injection (90mg) costs about 5000€ here.

4) I can't tell you anything, I just had to wait as I didn't want to use cortisone. But as I said, Stelara helped me with that.

If you have any questions feel free to ask!

When I was first diagnosed with UC I was told that there was a 30% chance I actually have Crohns. Knock on wood...no issues since my colon was removed 2 decades ago.

Hi,

I am back on this forum after checking it out 18 years ago when I had my j-pouch surgery. Things were good,no reason to come on the forum, occasional mild pouchitis but cipro took care of it. I also just found out this week that I now have crohn's . My GI said it happens in about 10% of j-pouch cases. He wants to use biologics. I have spent the last couple days reading and researching and plan to try everything I can before resorting to the scary meds.   I just read the book IBD Healing Plan by Christie A Korth and plan to follow her suggestions for a couple months first. I'll also be on this forum looking for tips and advice. Best of luck to you, I'll be interested to see how you do.

Deniselise,

I have gone from UC to Crohn’s and am now on Remicade. It’s not so bad. Been on it for 2.5 years, no issues, the inflammation has been held in check. I don’t know who Christie Korth is or whether she is a medical doctor or what her plan is (other than to make money selling a book), but I would be very careful about letting your condition get worse. Be careful and do what you have to in order to stay healthy.

I’m also a person diagnosed with crohn’s after having my j pouch. I’m taking Humira and Imuran and budesonide. Each have helped keep symptoms in check so I can live a fairly “normal ‘ life. I understand the desire not to be on a lot or any meds. We’d all love that! However, I’m thankful there are meds that can help keep inflammation at bay. It is a lot better for me than life without them .

Yeah, that is basically the boat we are all in. The inflammation will not go away unless it’s actively treated in our cases. It’s also dangerous to try non medicinal approaches because you can seriously deteriorate quickly and then a full recovery becomes longer and harder. Nobody likes the idea of being on chronic medications but it’s a reality many of us have to accept in order to maintain a reasonable quality of life.

I have been on biologics for about 13 years. The drugs do not scare me, at least not anymore. What scares me is a time when I run out of options. I am on Inflectra now (my sixth biologic). In all this time, my labs have been great.

Jan

I've also had my dx changed from UC to Crohn's, confirmed by biopsy.  I was never really encouraged to go on biologics, which was OK with me.  HOWEVER.  I'm now disconnected and will have my pouch removed due to ulcers, abscesses (big ones) and fistulas caused by the Crohn's. 

I am not aware of Crohn’s being “confirmed” by biopsy (or not). There are various diagnostic tests for IBD including the MRI and CT enterographies, the capsule endoscopy and the Prometheus tests. If there is a diagnostic biopsy test it’s news to me, but I will see my GI next week and ask. Typically the biopsies I have had done in the past were to confirm whether any inflammation is cancerous or precancerous, not Crohn’s or UC.

Absolutely biopsies can confirm UC vs. Crohn's, IF the biopsies are taken from areas which contain the hallmarks of Crohn's.  These hallmarks can include Granulomas and Pyloric gland metaplasia in addition to other markers.  These were seen on my biopsies the last few years.  My local dr. had suspected Crohn's with the symptoms I had for quite a few years.   My doctors at Cleveland Clinic definitively "confirmed"  Crohn's with my biopsy results, on top of the other symptoms I'd suffered from - including Ulcers.  Fistulas.  Abscesses.  Fevers.  High CRP, ESR.  Etc.

There are indeed some reliable diagnostic markers of Crohn’s that may be seen on biopsy. Unfortunately most cases of Crohn’s don’t have those manifestations, so less reliable diagnoses are commonly the best that can be managed.