Surgery or meds...?

Whether or not you do a re-section, you need to get on medication. I've not sure why you went off meds in the first place. If you do a re-section and don't go on maintenance medication to control, it will just come back in a different spot.

You can't decide on a plan of action until you know what's happening: wait for the test results first.

You have a chronic illness. You can't expect being off of meds forever.

The latest research and recommendations for IBD management does recommend that a small population of us Crohnnies can go without maintenance medications, but ONLY if we are very closely medically monitored. This is because the mesalamines have been extensively studied and shown to be not effective for Crohn's the the big guns meds might be overkill for folks in complete remission. http://img.medscape.com/article/772/973/772973-fig2.jpg

I saw Dr. Rubin, a specialist at U of Chicago and he did not recommend that I take maintenance meds because my disease was confined to my ileum which was re-sected. I fully expect that the Crohn's will return at some point, but if I can go many years with no meds, I can save the meds for when I really need them, as they are, as we all know, not without risks and side effects. So Lamb....I'm sorry you got so sick, but your doc shouldn't have let you go 13 yrs with no monitoring. That's not what I mean by not taking maintenance meds.

I'm about as cynical about meds as you can be. There was somebody on this board who had a 20-year-long remission without being on any meds. She bemoaned the fact that she never took any maintenance meds during that time, but that's about as long a remission for Crohn's that I've heard of - don't think I've heard of longer than 20 years but I could be wrong. (She also had 2 or 3 resections, so it wasn't like ultra-mild disease she had either.)

In short, as long as you're monitored on a yearly basis I see no point in being on meds when in remission. Especially given all their side-effects, risks and so on. Just my take.

I just don't think doctors know, or bother to portray to the patient if they do know, the vast array of potential side-effects that come with these meds we take. Untreated Crohn's has its own side-effects, of course, but if you're in remission you're not going to get those side-effects.

Mild Crohn's is a bit different. It probably will get worse if left untreated, but for some people that can take years. A bit of ileal inflammation isn't going to kill anyone. Personally, I probably wouldn't take medication for that either, but just have an eventual resection. Again, just my take: everyone is different.

scifigal2k said...
NCOT - I agree about trying to go off meds during remission. For me, though, since it's Remicade, I'd be afraid I'd develop antibodies while being off of it and then not be able to go back on!

Sorry, I'll explain it a bit further. If you are in a flare-up and going on Remicade gets you into remission, then you should almost certainly stay on Remicade indefinitely. If it's Remicade which is the only thing maintaining your remission, you don't want to chance a flare-up after coming off it.

Pretty much ditto all the other meds really, except it's safe to stop mesalazine/6MP/azathioprine cold turkey and you can't build up antibodies to them.

I was just referring to already being in remission, whether it's surgery-induced or whatever. I never took medication after my first surgery and remained in remission for two-and-a-half years (my surgeon actually seemed slightly surprised by that). Had there been signs of the disease returning, I would have got myself on a low-ish dose of 6MP/AZA and hoped that was enough to knock it on the head.

I think one of the questions that you want to ask is if the inflammation around your ileum was biopsied and does it show active Crohn's. The Crohn's foundation website has a section called "Ask the Experts." I recently asked about surveillance and treatment after a re-section, and they seemed to indicate that no meds in remission is ok, but as soon as any Crohn's returns, you need to treat. I copied it below in case this is helpful to you:


Q. I had an ileo-colic re-section in May 2014 after stricturing Crohn's in my ileum. I had a follow-up colonoscopy at 6 months that was clear with no disease. I am currently on no meds. What interval and testing do you suggest for surveillance going forward? At what point would most doctors initiate medical treatment ? I am in a low risk category, age 56, disease onset age 47 and non-smoker.
A. Some providers would start you back on a biologic within a few months post surgery to be safe and avoid the constant monitoring. Others would just closely monitor your progress and at the first sign of inflammation, start you back on a biologic medication. Either way, you are correct that close surveillance will be warranted. The best tools we have for monitoring this is a CRP and fecal calprotectin. CRP is a blood test that will let us know if there is any inflammation in your system but this is not a reliable marker for everyone. Fecal calprotectin is a stool test that is much more specific and reliable as a marker of gut inflammation itself. If any of these were elevated or if there was any question about the test results vs your symptoms then a colonoscopy would be the next step to evaluate how you are doing. We try to avoid serial colonoscopies however by using either or both the CRP and fecal calprotectin as a more regular form of surveillance.

Just thought I'd give an update...
New Dr was nice and I was able to have a proper discussion with him. The biopsies aren't back yet but given my symptoms, mild inflammation in my Ti, and the calprotectin being up, he has opted to give me steroids.
He has given me a 12 week reducing course of budesonide and then we will talk long term meds but he did appreciate my reluctance and did say we could discuss it and hopefully try to avoid it.
He thinks I have mild crohns and so won't suffer with fistula/ structures etc

Thanks for all of your support earlier in the week! :)