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Crohn's Disease Forum » Treatment » Azathioprine reassurance


03-17-2015, 09:24 AM   #1
Lawrence89
 
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Azathioprine reassurance

Hi everyone,

I know threads like this have probably been started a million times but I'm considering starting Azathioprine after not taking/needing any medication for about 5 years. I have had Crohn's for 10 years and took Pentasa for a good while which worked mostly, things eventually got worse and my consultant wanted to put me on steroids but I refused and tried to sort things out myself. I drastically changed my diet and that seemed to put me in remission for quite a while but I'm getting fed up now.

I'm starting to get very loud stomach noises and my new consultant says I have some areas of narrowing so wants to put me on Aza for a while to calm things down then have surgery to open up the narrowed areas. The surgery doesn't bother me at all but the thought of Aza is, mainly because I don't actually have much pain these days, just a lot of noise and diarrhea.

So, the point of why I'm writing is to ask if Aza will actually do anything to stop the diarrhea? I want to be convinced that it'll be worthwhile taking it as the side effects scare me. Some positive Aza stories would really help!!

Thanks all
03-17-2015, 07:51 PM   #2
InkyStinky
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Hi! I'm on 6MP long term - it's similar to aza. For me, it has done a great job keeping the gut inflammation at bay (last c-scope I only had one area of mild microscopic inflammation, otherwise I was clear). Like all IBD meds it doesn't work for everyone but glad it's worked for me. Except for fatigue which may or may not be 6MP related, I'm "normal"

Have you had labs for inflammation markers (wbc, sed rate, crp)? Fecal Calprotectin?

Did your GI tell you it takes about 3mths to start working?

Have you had a TPMT test to see if there may be a problem with aza for you? (in case it didn't link to the wiki:http://www.crohnsforum.com/wiki/TPMT )

Ok, side effects: I've found it helps to identify what exactly concerns you, and then ask your GI/research the exact statistics. So like, 6MP increases my risk of some sort of cancer, but it appears to be an increase from 2 out of every whatever-thousands of people to 4 out of x. So statistically significant? Yes. But not worrisome to me. (There's a CCFA webinar called "What's Best for Me?" that goes over risks/benefits of lots of meds here: http://www.ccfa.org/resources/webcasts.html )

Everything with this dern disease is a risk/benefit analysis - typically uncontrolled disease activity will be a much greater risk than med side-effects. But like I said, it helps me a lot to identify exactly what I'm worried about, and then find stats about my risks on the med vs. the general population.
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03-17-2015, 07:54 PM   #3
hawkeye
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Had great luck with it - was in remission for quite a few years before I eventually needed surgery. I'd go on it again if I had to.
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Current Medications: None currently. Was on Imuran (150mg/day) and 5-ASA (3000 mg/day) as maintenance meds prior to surgery
Surgeries: Left hemicolectomy 2014.
03-17-2015, 08:13 PM   #4
24601
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So I know this isn't what you want to hear, and I know it's frustrating, but I don't think anyone even your doctor can tell you that taking Aza will get rid of your diarrhea - it might and it might not because even if it helps with inflammation the diarrhea could be caused by the strictures and how those narrowings are making your gut function.

If those narrowings are largely composed of scar tissue, and it sounds like they might be since you are talking surgery, then Aza won't improve the narrowings, or not by much - they will only be improved by the degree to which inflammation contributes to the narrowings and how well Aza works for you on inflammation.

It is however a really good idea to get your bowel in as good as shape as possible with as little inflammation as possible before surgery, to minimise the amount of bowel that would need to be removed and to give the surgeon healthy bowel to rejoin. Also because you want to be free from active disease that could come back at the joins (or anywhere else) so that you will be healthy after surgery.

I understand you don't want to take steroids but if you have inflammation now I would definitely consider either steroids or EEN to get the disease under control while the Azathioprine gets to work. As others have said it takes about 3 months, whereas steroids or EEN would start working in as little as a few days.
03-21-2015, 04:23 PM   #5
Lawrence89
 
Join Date: Feb 2014
Location: London, United Kingdom
Thanks for the replies everyone, I actually have my next appointment on monday so I'll be sure to let you know how it goes.

InkyStinky, i'm pretty sure most those blood markers have been done (I'm certain about crp) and I've done a fecal calprotectin test. And yes thanks I'm aware it takes 3 months-ish to kick in so wouldn't bring about instant relief. TPMT test doesn't ring a bell but my doctor said he specializes in azathioprine like the hospital uses lots of tests to make sure the dosage is always right, so I imagine he's done the TPMT test, but I will mention it, thanks! I'll definitely give the webinar a look at too! And yes that's a good way of thinking about the worries I have, I shouldn't worry so much about the cancer risk but it's always in the back of my mind.

24601, that's a good point about the diarrhea, I do suspect it may be increasingly down to narrowing.

I'm sure I'll have a bunch of questions for you all after my appointment. Having your opinions is so helpful!
03-25-2015, 06:55 AM   #6
Lawrence89
 
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So mid way through my appointment my doctor actually decided he wants to push for me to have Azathioprine and probably Humira in combination as it's been shown to be more effective than either on their own.

He wants to see how this treatment does for my symptoms before moving forward with some strictureplasties/resections but thinks it's ultimately inevitable they'll need to be done.

I'm not actually worried about the lymphome risk anymore, he said in 20 years he's had only 2 cases of it. I'll take those odds. Has anyone tried this medication combination? And what were the results? Also, do strictureplasties cause scars on your belly? I'm guessing resections would as they require a more invasive surgery??
03-25-2015, 10:14 PM   #7
24601
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I haven't ever had Azathioprine with Humira but I am currently on an immunomodulator/Humira combo, it's just my immunomodulator is methotrexate. For me that's done something to control the disease but doesn't work perfectly. It seems to be a lot better than nothing for me though and that's been a real improvement for me as my disease has been very hard to control at times.

I've felt the same about the risks - at first you hear there is an increased risk of cancer and that sounds frightening and then you realise how low it is and get the statistics in perspective and it doesn't seem nearly so worrying.

For those of us with strictures they do often require surgery and I think it's about choosing the right time to do that as you don't want to suffer with the symptoms of strictures too long and let your health go downhill.

Whether you have a laparascopic procedure or conventional procedure you will have scars on your abdomen. For laparascopic there will be a few small ones from the instruments and a larger one usually. For the conventional procedure you will usually have a midline incision, positioned as needed to access the part of the bowel they are operating on and of a size that allows the surgeon to operate safely and the right degree of access.

Strictureplasties can be done via a laparoscopic procedure if there are only one or two strictures. If there are more strictureplasties to be done then a conventional open procedure with a midline incision would more likely.

For my first surgery I had 40cm of ileum resected and 11 strictureplasties throughout the jejunum and ileum and all through a 2 inch scar that just curved around my belly button with a little bit of a straight line vertically either side - most doctors were pretty amazed that my surgeon could do all that work through that small midline incision. But it really depends on the surgeon's experience level, what bits of bowel they need to be able to get to and also if they encounter any complications. The biggest concern is always the patient's safety and doing the appropriate surgery.

My second surgery required a slightly larger incision - perhaps a little over twice the original length - for six strictureplasties. When you've had prior surgeries you often have adhesions that mean your bowel is less mobile and the surgeon needs a larger incision to work. For my third surgery I had to have pretty much the full midline length as I had an abscess and lots of adhesions and various organs, in my surgeon's words, were 'welded' together - so he needed much better access. I've got used to having a midline incision scar though and I'm starting to think people without them are strange It's not so bad.

A simple resection can be done laparascopically too but again if it's more complicated and there's more than one length of bowel to resect they might need to do an open procedure. And you always have to be prepared that a laparascopic procedure may need to be converted to an open procedure just depending on how things go in surgery.

There are advantages to a laparascopic procdeure (decreased post-operative pain, shorter hospital stay, and shorter recovery period) but it really depends on whether it's appropriate for the surgery you need done and also on you choice of surgeon so you'd really need to meet with a surgeon to see what their opinion is.
03-28-2015, 05:39 PM   #8
Lawrence89
 
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Thank you SO much for that 24601, that was unbelievably helpful. Really good to know. I know this is a strange and perhaps stupid question but do you know if having open surgery damages or changes the look of your ab muscles? I know it's a superficial thing but I'm just curious. Also do you know how often adhesions cause later problems? The adhesions is the thing that's really most worrying for me at the moment.
03-28-2015, 06:15 PM   #9
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Hi, I was on pentasa for a few years too, then was weaned off them and had no symptoms for several years. After a colonoscopy yesterday, i have found out i have lots of ulcers and inflammation. I am now on steroids for three months, then starting azathioprine 😖 i feel anxious about starting this too.

Because ive been lucky up to now with my illness, this is scaring me slightly. With medication such as azathioprine, will that hopefully reduce the ulcers, or am i stuck with them now?
Any info would be fab, new to this site so thank you
03-28-2015, 07:13 PM   #10
Lawrence89
 
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Hi Ljurn, I'm pretty new around here too but it's been really helpful so far! Sorry to hear about your situation, sounds kind of similar to me in that I've been OK for a long time but an MRI I had recently suggested some swelling and one consultant actually rated me 3 out of 4 on a scale of inflammation.

To answer your question, if you can tolerate the Azathioprine I'd imagine it would indeed reduce the ulcers eventually (it takes a few months to kick in). I've obviously not had any Azathioprine yet though so hopefully someone can shed some light on it for you.
03-28-2015, 08:17 PM   #11
24601
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As far as I understand it they are cutting down the centre between the muscles when they make a midline incision, but the recovery process is certainly longer with an open procedure than laparoscopic on average. As with everything recovery time can vary a lot from individual to individual and the best thing you can do to reduce your recovery time is to be as healthy and well nourished as you can before surgery - which is a big part of the decision process, I think, in not waiting too long. Which isn't to say it's easy to decide because I think there's a very natural reluctance to allowing someone to cut you open, plus worries about scars and taking time off work or study, the uncertainty of the outcome and the possibility of complications. It's almost easier to wait until you are so sick that you are sure you need it but that can put you in a worse position in terms of healing and recovering. I almost certainly did that with my first surgery - I'd been in pain for such a long time that I didn't remember what is was like not to be, I wasn't sleeping and couldn't eat much and became very malnourished. On the plus side it was completely clear that I needed surgery and, with that much scar tissue restricting my ability to eat or even consume liquids, I wouldn't have in all likelihood survived long without it. However I really suffered needlessly for a long time when it should have been clear to everyone that the strictures weren't going to go away, because they have no way currently to remove scar tissue except with surgery. And my nutritional state was really poor when I went for surgery which increases the risk of complications.

Anyway that's definitely not to say it's easy making the decision but those are some of the things you need to think about and try to decide whether you're at the right point for you to have surgery.

I completely understand the superficial worries too. I think I wore a bikini for most of the summer of 2001 just because I could because I knew I was having surgery in August...and I guess I must have thought that I wouldn't again but I have because honestly these scars don't look that bad. And, even if they did, no one else should care because it's not their body. I think the most important thing is you being okay with your body and ultimately being healthy is the most important thing. Plus I consider them battle wounds and that makes me feel differently. Anyway back to the effect on abdominal muscles - it shouldn't change the look of them at all I don't think, although obviously you will have a scar on your abdomen. I am speaking as someone who has never had amazingly well defined abdominal muscles though but if you look at diagrams of abdominal muscles (or someone with very defined abs) you can see the line down the middle and that's where they make the incision for an open procedure. Very rarely I think people might have an issue with the groups of muscles either side not coming back together properly but it can be fixed and it's not common after this sort of surgery - it happens a lot more for women after pregnancy. It's more just about holding off on abdominal exercises until you're healed well enough. Which might, just as a guideline based on my experiences of what my surgeons told me (although obviously you'd need to get the okay from your surgeon who can assess your readiness for exercise), be 6 weeks for exercise more than walking (I had a surgeon who let me ski at 6 weeks post op) but perhaps longer for targeted abdominal work. It really depends on the individual though - I had some slow recoveries because of malnutrition for my first two surgeries, and on my second surgery that probably led to a post-op abscess which meant a couple of readmissions, whereas some people have much faster recoveries. Kids seem to be up and running a few days post op! Even with an open procedure they'd expect to get you up sitting in a chair either later the day of the op or the morning after, depending on timing, and possibly taking a few steps, the next day walking down the corridor and so on. If you're healthy going into the operation and have a good recovery you can be home within a week.

I think that while adhesions very commonly occur and if you had another surgery your surgeon would then encounter them (they have to cut through them to separate the bowel and as I said it's a factor in subsequent surgeries), they don't cause symptoms most of the time. If you have laparoscopic surgery the risk of adhesions is lower but I still don't believe it's a large risk for an open procedure, in terms of having pain from adhesions and requiring surgery for them but we do have to balance all the risks of complications with the impact on our quality of life and the threat to our health from the strictures - there's the possibility of perforation as well as the strictures worsening. I don't think it's ever easy but I think it helps to talk about all the considerations, even the little things, because if we find that we can put some of those aside and it becomes clearer what we are really choosing between then sometimes you just know that it's the right thing for you at that point in time.
03-28-2015, 08:42 PM   #12
24601
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Ljfurn, the steroids will be the first of your meds to get working on the inflammation and in time the reduction in disease activity will hopefully allow those ulcers to heal. As Lawrence said the azathioprine takes longer to work - roughly 3 months - but should help to decrease inflammation and keep you in remission.

You're definitely not alone in being concerned about starting azathioprine and there's a support group for it here. Your doctor should be monitoring you closely - especially to begin with. They'll be doing blood tests frequently at the start and then if you're tolerating it okay they'll continue with those routinely every 2 months or so.
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