Elemental Diet

What drink is he using it for it, out of interest? How old is he?

I tried an elemental diet early last year. I was on 9x 250ml Elemental 028 cartons a day (215 calories a carton). I lasted two weeks before giving up. It was not a success for me, sorry.

That said, I have read that children tend to tolerate elemental diets better than adults do. And studies have shown that the elemental diet is almost as effective as steroids in inducing remission in children with Crohn's. For me, the choice between steroids and elemental diet for a child would be a no-brainer, really: I'd go for the diet every single time.

If your son is an adult, the diet can still work of course.

When it comes to reintroducing solid foods again, you'll want to take it very slowly - no more than one food at a time, once every 2-3 days. The idea is that if a food causes a reaction, you eliminate it (hence why this stage is sometimes called the elimination diet); if it doesn't, you keep it in.

Best of luck to your son.

What are his symptoms if he comes off the Pred? Could they be managed with painkillers, antidiarrhoeals, low-residue diet, etc.? None of this would be a long-term answer of course, but, let's face it, the symptoms are gonna come back if your son tries to get off Pred. That is a given. Also, because he has been on it for so long, he would need to taper off the final 10mg very, very slowly.

Has your son had any tests since the resection to see if the Crohn's has come back or not?

If each can is 1050 calories, then I would say your son must need at least 3 cans a day.

I had most of that for years (no joint pain or mouth ulcers). But I had a lot of fevers, with the attendant chills, fatigue, etc. I was prescribed the occasional course of Pred, which worked temporarily but never for very long. That went on from 2005-11. In 2011, I was hospitalised for the first time, and I ended up being on Pred for the better part of 18 months.

It was the only med I responded to. The only reason I stayed on the dread Pred for so long was to avoid making a decision about surgery, because, like your son, I had full colon involvement. The right side was worse than the left side, but the surgeon was pretty clear that there was no healthy tissue available and that an anastomosis to diseased tissue would have a 50% chance of leaking.

I'm not sure how mild is 'mild', but I am still slightly surprised to read that a surgeon would consider a reconnection in your son's case, especially given that being on steroids and malnourished would further increase the risks of an anastomotic leak. I presume it was done that way to avoid giving him a stoma...

I hate to say it, as much as having a stoma sucks, it is the safest operation and the one least likely to lead to reoccurrence of Crohn's.

The only way to find out for sure if there is small bowel involvement is with upper GI imaging tests, such as a small bowel barium follow-through, MRI scan, or pill cam.

They sound it :-/

I wish I could help more; I wouldn't wish this disease on my worst enemy, to be honest. But if the disease hasn't spread (or got worse in what's left of your son's colon), then hopefully the diarrhoea will settle down eventually. It can take a long time for the bowels to readjust after resection surgery, particularly if a lot was removed :-/

Ah, right.

I didn't have many problems with putting on weight while on Pred and drinking nutritional supplements, so I never needed TPN. I didn't even bother trying to taper Pred in the weeks before surgery; my surgeon said there was no point in trying to ween off it, as I would have to be put on iv steroids during surgery anyway.

That's a surprise I would have liked to have had :-/

I had terminal ileum disease (which the surgeon cut out, of course). I don't think there is any Crohn's in my small bowel currently, but I'll know a bit more when I see my GI in a month's time. A week before I see him, I'll get a full blood count and faecal calprotectin test done, which will show if my inflammatory markers are raised. To be honest, if I have inflammation anywhere, I think it's most likely to be in my rectum (which wasn't removed).

I don't blame your son for not wanting surgery again, but sadly he might have to one day. Anyway, I think it's a good idea to talk to the GI; if nothing else, he can run blood/stool tests. It might not be a bad idea to rule out infectious causes of diarrhoea such as c.diff either, just in case it is not the Crohn's.

Crohn's obviously runs in your family :-/ It does in mine a bit. My brother and cousin got Crohn's, too, but so far it's just been confined to us three. (It probably came from the Irish side.)

It does have varying presentations, even within the immediate family. It can appear in different locations or have differing severity. That's definitely true of me and my brother. He has long periods of remission and doesn't seem to have got any worse over the years, while I started off really mildly, but never went into remission and ended up with severe disease.

Yeah, I have an ileostomy :-/ Had the operation on 20th February this year. Has your son's small bowel involvement ever gone beyond the terminal ileum? If not, then a permanent ileostomy is more llikely to provide long-term relief. But if he had/has extensive small bowel disease, the prognosis is certainly poorer. I hope not...

I don't see any bad attitude at all. You are quite right to be concerned about the future; I just wish I could reassure you. The only thing I can say is I do think your son is just about young enough that there might be a breakthrough in his lifetime. I think one day they'll crack this disease or at least come up with much better treatments.

Anyway, I must go to bed now, but good luck with you and your son as well. I really hope it does not come down to needing an ileostomy, but if it does.... the vast majority seem to end up coping with it pretty well and feeling like it gave them their life back. (I haven't, but I've always had problems with depression and accepting things...)