Desperately need some Crohns advice

Infliximab is more commonly known as Remicade. I do not think the DR gave you the right description of the treatment course with this medication. It is an IV drip, usually done at an infusion center, and is done every 6 weeks. Not FOR 6 weeks. It is a medication you take for the foreseeable future. It is very good at getting Crohn's into remission. It should be given with anti-histamines or a small steroid dose to prevent allergic reaction.

Has your husband been given a firm diagnosis of Crohn's or UC? If UC, surgery is a good option. If Crohn's it is more complicated.

Welcome to the forum.

Wow, first I would find a new GP, and a good GI now. second, are they giving anti-biotics along with the steroids? a good combo of high dose anti biotics (generally cipro or flagyl) along with a high dose of prednisone by IV in the hospital could very well knock the inflammation down to a manageable level within days and give you two time to think about treatment options. Personally I would not jump into a life altering surgery after only a couple of months of symptoms unless it was a do or die situation.

Secondly, can you recall anything that had happened 12 weeks or so ago that your husband possibly did that might have triggered a sudden flare like this? Had he taken antibiotics or started any new meds, anti depressants supplements or anything? I know my very first symptoms started after an idiot GP put me on allergy meds, antibiotics, and finally Zoloft over the course of about a year. The Zoloft is what finally kicked in the CD symptoms but I think the others prior probably helped too.

I have never taken any of the hard core drugs, I have only taken the steroids, anti-biotics, and mesalamine, but that decision probably helped lead to me losing my colon in the end any how.  Is he open to extreme diet changes like SCD or paleo? It has helped a lot of people with IBD? There can be many different triggers for the onset of CD flares: meds, food intolerances, poor lifestyle habits (I lived on coffee and cigarettes lol), family history(I have a brother with CD, and two sisters with UC.

I hope he finds some relief soon.

It was possibly stopping the smoking which caused the flare-up, rather than the vape stick. This would be more likely if it was UC instead of Crohn's; for some reason, smoking tends to help UC, but make Crohn's worse (don't ask me why). There's a guy on the Ostomy board who reckoned smoking masked his UC for 6 years, then it all blew up when he stopped. Here's the thread if you want to read it:

www.healingwell.com/community/default.aspx?f=33&m=2861108

Keep pushing for a definite diagnosis. It may not be possible, but it would be better if you knew as this will affect future surgical options. Crohn's colitis is Crohn's of the colon, that's all: colitis means inflammation of the colon.

GP sounds like an utter joke, but I have never met a GP who was knowledgeable about IBD. Your husband's sister having Crohn's should have been an instant red flag sign in itself. It doesn't always run in families but it often does: I have a brother with Crohn's.

Anyway, I ended up in hospital on the verge of needing surgery two years ago. It's a long and tedious story but it can be summarised as: Infliximab and antibiotics did not work; IV steroids did. The surgeons wanted to operate on me then, my GI argued for giving Infliximab longer to work - it never did.

But neither did steroids in the long term. Every time I tapered off them, the disease came back and I was hospitalised again. More steroids. I ended up totally steroid-dependent.

Never tried cyclosporin; I wish I had. Ended up having a permanent ileostomy 17 months after the first relapse.

Short bowel syndrome is not an issue with colectomies. It becomes an issue with adults once about two thirds of their small bowel is removed (this does vary). But colon removal doesn't affect absorption of nutrients/calories.

My longest single stay was 9 days, but I had been in for 5 days a few days earlier. What happened was the hospital originally thought I had a bacterial infection. A doctor did put me on iv steroids at first, but the next day my consultant took me off them, actually sounding a bit annoyed with the doctor who'd put me on the steroids. He thought I had gastroenteritis.

I was put on antibiotics (Metronizadole) and sent home 5 days later. Even on the day of discharge I was starting to feel quite ill again, but I wanted to go home and hoped it was the dinner I'd eaten (terrible hospital pizza). But the relapse continued. I remember phoning my IBD nurse telling her the fevers had come back and she was utterly useless. A few days later I was in too much pain to be able to function; I've got to give credit to my GP here, he actually was brilliant. He told my dad to bring me in, gave me a painkiller, called an ambulance for me. The painkiller worked so well, he was genuinely worried the hospital might send me home and told me not to let them.

But they didn't send me home. This time I was in hospital for 9 days. I was put on IV steroids and kept on them this time. I was given antibiotics again, but not Metronizadole, I don't remember the name. I think the hospital still suspected a bacterial infection; they kept me in a sideroom for the first few days. I also had to poo into a paper bowel and record all my BMs. I tested negative for any bacterial infection though.

An abdominal x-ray showed I had a dilated colon which looked like toxic megacolon. A CT scan showed I had a stricture in the terminal ileum. A month later, a colonoscopy showed Crohn's colitis, but the stricture had gone (probably because I was on Prednisolone); the IBD nurse used this as evidence to tell my parents things were fine, that I wouldn't need surgery after all!

After that, I spent the next two months tapering off Pred and a month on a liquid diet. That got me through Christmas 2011, but I was back in hospital again in January for a week.

I lost it during that stay; I told my consultant I'd had enough, I wanted surgery. He had never spoken about surgery before that. Now he sounded deadly serious; he said that the only surgery I would be able to have, given the extent of my disease, would be a colectomy. He referred me to a colorectal surgeon, who basically said exactly the same thing a few weeks later.

The surgeon was not remotely reluctant to operate; in fact she asked what date I wanted to have the operation on. (Leading to my dad fulminating afterwards about how she was 'pushing radical surgery' onto me.)

To cut a long story short, I stuck it for a year. Every time I came off the Pred I would relapse. Sometimes it'd end in a hospital stay, but a couple of times I managed to get a doc to prescribe me Pred and painkillers without going into hospital. Each relapse would result in unbearable pain, something I had not been used to with my Crohn's disease. By January this year, I was completely worn out; I booked surgery for the 20th February and kept myself out of hospital while waiting by staying on 40mg Pred.

For surgery, I was in hospital for 8 days. It was a smooth recovery; nothing went wrong. Other than the idiots taking hours and hours to get me proper pain relief when my epidural failed the second night after my operation.

Re short bowel. Yes, I think it must have been the small bowel which was removed in your daughter's case. It can take the bowels up to a year to recover normal function after a major resection - if too much small bowel is lost, normal function will never be regained. But anyway, I am glad your daughter is thriving and healthy. I'm sorry about what's happening to your husband, though. I personally think he should try all the medical options first, but I suppose he at least knows more than most people what an ileostomy involves.

If he has UC, he'll be able to have it reversed anyhow. If it's Crohn's, possibly, but it complicates the picture massively. The surgeons won't do a j-pouch (an internal pouch formed from the small bowel and which takes the place of the rectum) in Crohn's, because the disease just tends to come back and attack the j-pouch. There are exceptions to this rule, but not many: and with your husband being newly diagnosed, he wouldn't count.

Otherwise, the only reversal option left to people with Crohn's is an ileorectal anastomosis, ie joining the ileum to the rectum. You need a rectum and ileum free of disease for this, and there is still no guarantee the Crohn's won't come back at a later date.

Okay, I've massively rambled and probably said far more than was necessary, so I'll shut up now :-/

Thanks :p Yeah, it's been a long ride. I was diagnosed in 2000. It was mild for the first five years, so not much of a problem, but after that point...

Is James' doctor a surgeon by any chance? It's been my experience that surgeons just seem to want cut things out, while GIs are far less pro-surgery. My GI did try almost everything to be fair: Remicade (including doubling the dose at one point), Humira, Methotrexate, even an elemental liquid diet. I don't think he ever mentioned Cyclosporin, though; not sure why. Once Remicade failed, he seemed to lose his optimism that anything else would work. For example, one thing I did ask him about was anti-MAP therapy; a gruelling triple-antibiotic therapy designed to eliminate MAP, a bacteria thought by some to be a cause of Crohn's.

His answer wasn't encouraging. He only knew two people who'd been on it: one person went into remission but their Crohn's came back 6 months later and the other it didn't work for at all.

He said he would refer me to a Crohn's specialist if I wanted to, but I let that slide. Not entirely sure why. Again, I wish I had done it now. I don't think it would have been likely to have saved my colon, but still, I wish I had at least tried.

So a part of me wants to encourage your husband to exhaust every possible option; the other part doesn't want him to go through the crapness of one therapy after another failing. He will be debilitated so long as he has severe IBD going on; it is a debilitating disease on just about every front. I would also check that your husband has been tested for anaemia; it's a common side-effect of having IBD, but an iron transfusion can easily correct it. A very low haemoglobin will also make you feel exhausted.

Re steroids. It usually took a few days for my BMs to settle down; the abdominal pain and fevers were always the first to go (aided by morphine, admittedly). I think there is still time for your husband to respond to the steroids; but there is a possibility he is a poor to non-responder (20-30% of people are from what I've read).

That said, steroids are only of use as a stopgap med. They get you into remission quickly; but they don't maintain it. And they're too dangerous to be used as maintenance medication, so you cannot stay on them long-term. One thing to be wary of with Pred is dependency. It's not psychologically addictive, but your body becomes increasingly dependent on it just to function, never mind to keep the disease at bay. That's more likely to happen if you've been on repeated courses of the stuff, or if you have been on a high dose for months on end.

If steroids don't knock you into a sustained remission the first time you take them (I'm talking at least a year), then in my opinion they're not worth taking again after that. They're not going to work any better the second, third or fourth time; in fact they'll work slightly less well each time you take them. As you might be able to tell, I'm a bit jaundiced about Pred, to say the least.

But I do fully understand you wanting the steroids to work for your husband. I hope that they do, but I also hope he finds another med to take over and keep him in remission.

And another super long post from me >_>.

Post Edited (NiceCupOfTea) : 10/12/2013 5:34:13 PM (GMT-6)