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The only consistent thing so far is the inconsistency. Arggh!

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Crohn's Disease
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Posted 8/29/2014 8:23 PM (GMT 0)
My 25-year-old son had watery (and occasionally bloody) diarrhea 6-8 times/day for the last 10 months. Bloodwork essentially normal except for a high ESR (21). Stool samples normal (no C-Diff, parasites, toxins, etc). No inflammation in esophagus and stomach, but positive for H-pylori and associated gastritis. Colonoscopy was positive for "chronic active colitis" and granuloma in all areas except terminal ileum and rectum. GI doc thinks it's UC, pathology report says it's suggestive of Crohns, Prometheus test negative for both (***?). Started on Lialda (4 pills/day), VSL#3, Omegas, Colostrum and symptoms have improved significantly (semi-formed stool 1-2/day, but a lot of gas). Would really appreciate your expertise and guidance on: what this really is; is he in remission now; and what is the best treatment plan. Thank you so much!
Posted 8/29/2014 10:03 PM (GMT 0)
Welcome IBDNewbie.

Your son is not in remission until there is an absence of all symptoms.

How long has he been on the meds listed? It's great that he's down to only 2 BMs per day. If he's feeling a lot better you might try slowly adding psyllium capsules to see if that will bulk up his stool.

If he has UC it seems like he'd have inflammation in the rectum. If he does have inflammation there you can get a lot more improvement by adding rectal meds.

Your son is a grown-up and should post here too! We don't bite!
Posted 8/30/2014 2:38 AM (GMT 0)
Hi Kazben,

Thanks for the reply. Wonderful news that you have been inflammation-free since 8/11!

My son has been on the Lialda only about a week and the others about two weeks. He was tremendously better (almost normal) after just two days on the Lialda, but because we're so new to all this, I didn't want to get his hopes up or mine that it might be a real remission until I've heard from people who have been through it already.

There's no inflammation or anything abnormal in the rectum. I understand that rectal sparing is consistent with Crohn's and not UC, which is further reason why the GI's UC inclination is confusing. But then again, so is it all.

At some point soon, I'm sure my son will post himself. (I'm posting so that I can learn and hopefully be helpful to him). He's still adjusting to the diagnosis (such as it is) and knowing him, he has to sort out some things himself before he can share it with others.

I appreciate the suggestion on the psyllium capsules. Thanks again for the reply.
Posted 8/30/2014 4:39 AM (GMT 0)
I agree with kazbern (as usual). Rectal sparing indicates it is not UC. The presence of granulomas in the biopsy further indicates it is Crohn's disease and not UC.
Posted 8/30/2014 5:12 AM (GMT 0)
Thanks, Beave. Do you or Kazbern or anyone else have any thoughts on whether the almost immediate response to the Lialda (or something else he's taking) will last any significant period of time? And Kazbern, regarding the hoped-for remission, does the "absence of all symptoms" mean all the physical symptoms of diarrhea, frequency, urgency and gas or does it also mean the clinical/scope results, too? Is there a grey area or middle ground where it's better, like somewhere between a flare and remission?
Again, thanks so much for your time, advice and guidance.
Posted 8/30/2014 2:48 PM (GMT 0)
To me, remission means completely normal blood work and completely normal findings on the scopes and biopsies. "Absence of all symptoms" is tough, because we sometimes get symptoms from other things like food intolerances, IBS, motility issues, etc. that aren't necessarily indicating active Crohn's disease. Most of us struggle with this issue on some level. I think it's great that your son is responding to the Lialda. I don't know if any of us can answer how long it will last, but the fact that he responded quickly and so well is a great sign. And yes, as far as I'm concerned all of IBD is one big confusing grey area!!!
Posted 9/1/2014 7:02 AM (GMT 0)
Hi Gumby44. Thanks for the info, support and encouragement. It's so very valuable and meaningful to know that he's not alone on this confusing and ever-changing path. He'll always have his family and friends, but we can't help in the same way you and all the others on this forum can. Again, thank you.
Posted 9/1/2014 2:12 PM (GMT 0)
Hi IBDNewbie - I agree with Gumby that a true remission is confirmed by scope.

Our minds are happy to play tricks with us, and to "normalize the deviation." You start to think you're feeling a lot better, and you think you're well, when actually you are still inflamed but haven't cared about the mucous or the cramps or the rumbling belly very much because - hey! No blood! LOL.

I spent the first six years of my IBD journey being undertreated. That led to a flare that involved all of my joints much more than my bowel, and I started seeing a rheumatologist, who over several months basically lectured me into getting better care. My GP convinced me to change GIs because I'd been chronically anemic for years. Between the two of them and my 3rd GI, I did finally achieve a solid remission in 2011.

One thing that you'll hear about Crohn's is that it involves deeper layers of the bowel than UC. Lialda and the other mesalamines are essentially a topical medication and won't really go deep. There's some data that the mesalamines aren't very effective for Crohn's, but your son's response is great and I would say it's probably good to keep with it. I've been treated with mesalamines since diagnosis; my IBD was never really fixed as either UC or Crohn's. I suppose I could have tried the stronger immune modulators, but my DRs have never pushed me in that direction. Many of us are in this gray area, and while it's frustrating it is not that unusual.
Posted 9/6/2014 8:01 PM (GMT 0)
Hi Kazbern,
Thanks again for your input. You're so right -- our minds do like to play tricks with us. As a mom of a kid (yes, even at 25) with IBD, I'm realizing more and more that I'm praying for/looking at a good day as the first sign of remission instead of as just a good day. Now I'm so grateful for those good days. I'm also realizing that the grey area is frustrating but not as anxiety-producing as it first was. I remember when the specialists couldn't decide whether my younger son was autistic, had Asperger's or something else. It got to the point where I couldn't have cared less about the label. All I wanted was to get him whatever help he needed. (Thanks to a lot of different therapies and the right help, he's doing great.) This IBD conundrum is similar. Whether it's Crohn's (most likely), UC or indeterminate, I just want him to get the meds and help he needs so that he can have a happy, full and productive life.
Thanks again for sharing. It means a lot.
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