Scope done, put on Imuran, will it help Fistulas?

[rena_isis13]

Hey all
Had my colonoscopy done last week by my GI. The results for the biopsies weren't back yet when I saw him after, but he said there was obvious inflammation in my sigmoid and the lower part of the descending colon. He has put me on Azathioprine (thats Imuran?) and long term Flagyl :yfrown: (dont like flagyl!) I am to have weekly blood tests to keep an eye on my liver, and I see him in a month. I'm a little worried about lowering the immune system, I work in a shop where I'm serving people and handling money most of the day (and sometimes they're not the cleanest :/ ) though I could try to do the behind the scenes work but it can't be helped when we're busy. Generally, I'm pretty healthy and don't often get a cold or anything so I'm probably overreacting....
I also have perianal disease, my GI called it fistulizing crohn's. I currently have 2 fistuals with setons in place. He's hopeful that the drugs will help clear these up. Has anyone else had any success? I think we'll try it for 3 months, if theres no improvement he'll move onto Humira.
Oh and the dosage for the Azath. is 2 x 50mg tabs daily, and after reading a few posts I'm going to take one in the morning and the other at night. Thats ok right?
Any other advice would be greatly appreciated! I hope everyone is well!
Serena.

 

[dreamintwilight]

Hi Serena

Don't worry about the lowered immune system. Most Crohnies report actually experiencing less colds while on drugs because their overall health seems to improve. Just make sure you follow proper procedures to avoid colds (ie washing hands, staying away from obviously infected people, using antibacterial lotion if you can't get to a sink, trying not to touch your face until you've washed your hands, etc.). You may want to look into some quality vitamins to help keep you healthy as well. There are many threads on the forum here with good suggestions for extra supplements we need. I worked in a bank, where I also had to come into contact with people and handle money, which is SO dirty, and I didn't get any colds. Even with my coworkers around me who did have colds. I just made sure after every transaciton I used the antibacterial lotion and washed my hands on every break I got.

As far as if Imuran will help with fistulas, it was my understanding that the only drugs to specifically target this problem were the TNF-blockers like Remicade, Humira, and Cimzia. I had fistulas (internal, not perianal) when they found out I had Crohn's and I was immediately put on Humira. A few months later Imuran was added on for me because the Humira wasn't controlling the inflammation enough. Now, I'm ont he right combination of meds to keep my inflammation down and I have no more signs of fistulas according to my last CT scan.

I believe it is fine to break up your medication doses in the morning and evening. I've read about others on here who do that to avoid the nausea.'

Good luck with your medications

 

[rena_isis13]

Thanks for the advice Marisa! I do also take a multi-vitamin/multi-mineral dietary supplement along with fish oil and probiotics. I just looked at the label of the probiotic and it has 'immune support' written. Should I still be taking these seen as I am meant to be lowering the immune system? It does help the candida that I always get from antibiotics though. I told my GI that I'm taking these but he didnt say much, he also didnt say much about diet. I got a bit annoyed when I saw him last, all he talked about was drugs and then the appointment was over. I'll arm myself with a list of questions next time I see him and insist on sitting there for my allotted 15 mins! lol
I guess he started with the Imuran to get the inflammation under control first? It gives me a little hope to know that your fistula cleared up! Though I try not to get my hopes up as I know perianal disease is so complicated. My colorectal surgeon even said that I was complicated girl lol
So far the nausea has stayed away, though I do have a yucky taste in my mouth all the time, but I suck on lollies to help with that lol
Thanks again

 

[hainman]

hi rena.i was on aza for over a year and felt better than i had in a long time,think i had one wee cold in total.considering i went to playgroup with my daughter and my son was at school i done realy well,a few occations my family got sick but i was fine,near the end i went upto 150mg but i always took them all at the same time first thing in the morning and i was fine,no sickie feeling but everyone is differant.hope all goes well for you.i had one fistula but i was removed during my op years ago coz it was from bowel to bladder.good luck.

 

[dreamintwilight]

I was worried too about whether it was alright for me to take any vitamins/supplements touting immune boosting abilities. From what I've read, immune suppressing medications just suppress the immune system enough to get it into a "normal" range, since Crohn's makes it overly active. With probiotics, it's promoting good bacteria growth in the digestive system, which gives you a healthier immune system. I kind of think of it...well, Vitamin C and Vitamin D boosts the immune system and we're not told to stop taking those or remove them from our diet, so probiotics should be alright.

So many GIs these days offer a high dose of probiotic formula in their practice, so it can't be too bad if they are getting behind these products. Maybe the only thing to consider would be the potency of the probiotic you take. Depending on the concentration of bacteria in your probiotic, it may give you more symptoms like diarrhea or gas if it's stronger than what you may need perhaps. Hope that helps some.

I take a probiotic and have not experienced any problems

 

[hainman]

its strange as ive asked my gi nurse about these probiotics ans she said id need to eat bucket loads of the stuff for it to have an affect to help my situation,but she says the best probiotic is a thing called vsl/3 but its quite expensive at about 20quid for not even a weeks worth,might give it a bash and see what its all about,plus theres the manuka honey thats meant to have amazing healing powers...

 

[stefan]

Hi again Serena,

I don't much to add, but am glad to see you seem to at least have a semi-decent GI now, having being one of the people that recommended 3 to you back in 2010 on another forum.

Most GIs don't really like to get in to diet as 1) everyone's different 2) people don't like sticking to it and 3) it's a bit out of their expertise, and there's nothing to suggest it causes or triggers IBD, just that it makes it considerably unhappy! I do know a dietician in Adelaide that specialises in IBD, and is attached to the Flinders Medical Center gastroenterology unit, but I don't know how far he goes beyond the concept of low residue diets.

Personally I'd be inclined to look online for details about the low residue diet, and then try foods yourself keeping a food diary, documenting how you respond to them. It'll take a while and your diet may be boring while you do it, but it's really the only way to scientifically work out what you can and can't tolerate.

Oh, and with respect to the immune system, it seems people with IBD can have either an underactive immune system that regularly catches colds etc, or an overactive immune system such as myself. Having been on 3 strong immunosuppressants at one point, I still very rarely got sick, so I wouldn't be too concerned about it unless your start to come down with things.

Best of luck,

Stefan

 

[Lydia]

Imuran can help fistulas heal. It just takes a lot more time to help. I had fistulas way back when I started imuran, and the imuran put me in remission and closed al my fistulas. It wasnt a fast process, and I was also on antibiotics, and prednisone while waiting for the imuran to kick in, but the combo helped heal everything.

 

[Lydia]

The term immune booster is kind of a misnomer. I prefer to think of them as balancers. The vitamins just help balance as well at the probiotics. I take them everyday.

Some herbs truly do boost the immune system, like echinacea, goldseal, and purified ginseng, but I have taken those while sick with to ill effects to my crohns. I just dont take them while healthy.

 

[Rebecca85]

How are the fistulas doing now? Has there been any improvement?

 

[rena_isis13]

Hi all, sorry I've been absent for a while! I commented on a thread in the Humira Club just the other day. I can almost join the club lol. I saw my GI last week, I had been on Aza and Flagyl for 3 months with little change to the fistulas. So he stopped the Flagyl (yay!) and is doing the application for Humira. He was really happy for me to be going on this med, saying that this has had better success in healing fistulas. So at the moment its just a waiting game, until we get the go ahead from Medicare to start. He has also been happy with my blood test results, that my 'inflammatory markers' are low and stable.
Thanks for that advice Stefan, I did look online for low residue and low fibre foods a while ago. I went very low residue for a few weeks during a flare, then gradually adding things. I have now realised that high fibre causes me the most trouble. So only white bread and pasta etc, and I also avoid grains, nuts, seeds and uncooked veges, oh and sweetcorn/popcorn. I think the Aza has helped me to tolerate things better, I dont get as much pain as I used to. And I haven't yet been sick with a cold or anything (touch wood!), being winter now there is quite a few sick people around but I seem to avoid it. My GI did say that Humira will lower the immune system even more, so I'll have be a little more careful. Stefan, the GI and colorectal that I see are through the Queen Eliz Hosp.
Lydia, thats fantastic that your fistula healed up, so I have a little more hope in things healing up for myself
Thanks for all your comments and advice, I hope everyone is well!

 

[stefan]

Thanks for that advice Stefan, I did look online for low residue and low fibre foods a while ago. I went very low residue for a few weeks during a flare, then gradually adding things. I have now realised that high fibre causes me the most trouble. So only white bread and pasta etc, and I also avoid grains, nuts, seeds and uncooked veges, oh and sweetcorn/popcorn.

I'm glad you've started to work things out with your diet already, but if they don't have a suitable dietitian at the QEH, I'm sure they'd be happy to refer you to the FMC if you want to get some more thoughts about it, and they do have a good little booklet which has nice tables of what you should and shouldn't be able to cope with. Though as I said before, you're really the one that has to do the leg work, an experienced dietician might be able to make some suggestions you may have overlooked.

I haven't yet been sick with a cold or anything (touch wood!), being winter now there is quite a few sick people around but I seem to avoid it. My GI did say that Humira will lower the immune system even more, so I'll have be a little more careful.

That's good to hear. The most common thing with Humira, or any TNFα antagonist that you must be careful of are opportunistic infections, especially fungal infections and tuberculosis, as your ability to fight these could be severely impaired. Like you, I very rarely get a cold, but have had a couple of minor infective things and otherwise easily ignored fungal rashes where my GP has opted to treat them aggressively as a precaution.

Best of luck,

Stefan