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Crohns, Setons, Humira and Remicaide
poshniallo
Registered User regular
Registered User regular
Well, not all at the same time!
I have Crohns and for the last 5 or 6 years have had a sinus, or closed fistula, just inside my colon. I mean a little hole that goes nowhere except into flesh, and is open only at one end, inside my colon near my anus. We didn't realise until recently - sometimes it doesn't bother me at all, but for the last year or so it's been giving me terrible pain, causing MRIs etc that discovered it.
I've been taking ciproxan, but although it's occasionally effective, in the end it always starts to hurt again.
So me and my doc have decided to do either a seton or give me Humira/Remicaide. We have a language barrier, but I think he said that if The Hole was infected, the Humira would not be OK, so he would do a seton. He said to expect about a week off work and then to be able to live a normal life with it.
Bear in mind (a) that it's a closed fistula/sinus. Sometimes it gets infected, sometimes it seems to be open and draining, sometimes closed and so essentially an abscess. But it's only open at one end, so it's not a proper fistula, with all the horror of that. Oh, and (b) I live in Japan, so particular treatments may be different here - or simply priced differently.
So any advice, please? I would much rather take Humira than have the seton, and I'm worried about how much the seton op is going to hurt (if they do it they will go in through the anus, no cutting necessary.
I have an MRI next week to check how things are looking, and an appt the week after, so whatever happens it'll be by the end of September, probably.
I am freaking out, to be honest. The pain I've been in has been debilitating, but the treatment options all have their downsides too. I know I need something done, but if nothing else I just want to know as much as possible about them to feel reassured.
Any advice would be great.
I have Crohns and for the last 5 or 6 years have had a sinus, or closed fistula, just inside my colon. I mean a little hole that goes nowhere except into flesh, and is open only at one end, inside my colon near my anus. We didn't realise until recently - sometimes it doesn't bother me at all, but for the last year or so it's been giving me terrible pain, causing MRIs etc that discovered it.
I've been taking ciproxan, but although it's occasionally effective, in the end it always starts to hurt again.
So me and my doc have decided to do either a seton or give me Humira/Remicaide. We have a language barrier, but I think he said that if The Hole was infected, the Humira would not be OK, so he would do a seton. He said to expect about a week off work and then to be able to live a normal life with it.
Bear in mind (a) that it's a closed fistula/sinus. Sometimes it gets infected, sometimes it seems to be open and draining, sometimes closed and so essentially an abscess. But it's only open at one end, so it's not a proper fistula, with all the horror of that. Oh, and (b) I live in Japan, so particular treatments may be different here - or simply priced differently.
So any advice, please? I would much rather take Humira than have the seton, and I'm worried about how much the seton op is going to hurt (if they do it they will go in through the anus, no cutting necessary.
I have an MRI next week to check how things are looking, and an appt the week after, so whatever happens it'll be by the end of September, probably.
I am freaking out, to be honest. The pain I've been in has been debilitating, but the treatment options all have their downsides too. I know I need something done, but if nothing else I just want to know as much as possible about them to feel reassured.
Any advice would be great.
I figure I could take a bear.
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In general you cannot go onto either with an infection. Tat fistula will close itself on these meds which is cool but if it is infected you cannot go on an immuno-suppressant which is what both of these drugs are.
In general see if they can do the surgery without opening you up all the way. I have had two surgeries in quick succession. First was to clean up two abscess that wouldn't heal on drugs and couldn't be drained and remove damaged tissue. Second was to clean up infection from the first surgery, long story.
The op if they aren't cutting you open will hurt less than your current pain levels probably. I know Japan is stingy on pain killers after living there but if they give you some stay on top of the pain.
Once the fistula situation is cleared up though and you go on humira or remicade(I recommend remicade first, it is older and has more of research) you will go from minor occasional symptoms to 0 symptoms while it works on you. Total remission is usually what these drugs do when they are working. You do have to be more careful about infection but nothing major. Like no trips to places with open sewers so stay out of India or Manilla. Otherwise you are pretty secure and you don't even have the dietary restrictions. If you have other autoimmune things like Rheumatoid Arthritis, Ankylosis Spondylitis or anything similar these drugs put them in remission as well.
A lot of the new drugs:Remicade, Cimzia, Humira and a few down the pipe are basically miracles and completely get rid of Crohns but you have to clear up your infection first.
God I wish the infection was gone and I could just go on Humira. That sounds so wonderful.
But to be honest I'm so exhausted and broken right now that the prospect of an op and a week or so lying around even sounds appealing.
Shady Used Parts Diety in the Low-End part of the Cosmos: Woah, woah, woah. Those are speed holes. They make the organs work faster. You're lucky you got them at such a good price.
If I understand the situation correctly, you basically have an ulcer, is that right? If so, I can tell you that my experience with esophageal ulcers is that seton treatment did solve the issue, but the treatment itself was fairly long and arduous, involving pretty invasive surgery. I'm happy to have had said surgery, but I'd be lying if I told you anything about it was pleasant (well, in fairness, the doctors were all very pleasant).
If you have the option to get said treatment, I'd strongly recommend you get it. Just be prepared for a rather miserable journey through ER rooms, blood tests and hospital stays.