Extensive inflammation in terminal ileum

[GirlFriday]

I just got back from my GI and in his words 'the inflamation is really bad in your terminal illeum, really bad and we need to start treating this more aggressively'
So, I am now on 12 pills a day (9 x messazaline and 3 x entocourt) and next week I have to go have a chest x-ray and blood tests in order to start Imuran. This has freaked me out a fair bit. Imuran - I'm scared of it.
I don't know, him saying this just made it all so real. I know how stupid this is, really I do, but I think part of the problem is that I've always thought a drug like Imuran is something people who are really sick take - now I am one of those people and it makes it all seem so... serious.
Blah, blah I'm rambling now, sorry. :depressed:

 

[beth]

I know the feeling. Imuran is okay, it's a good drug if you tolerate it.

Crohn's is serious...

 

[Agent X20]

Can't blame you for freaking out a bit, GF, but I've been taking Imuran for two years now and it's made me a lot better without any side effects (none I'm aware of anyway). You have to have loads of blood tests when you're first on it, so if there are any problems or reactions, they'll take you off it pretty quick. But don't forget it takes a few months before you start to feel the beneficial effects. It seems with crohns they just have to keep trying different stuff until they find what works for you, because we're all different.
I used to hate taking any sort of drug, but I'm a bit more laid back about it now. I think if I feel OK today, and I have a decent prospect of feeling OK tomorrow, I'll go with it.

 

[GirlFriday]

Thanks Beth and Agent X20, I really appreciate the support. I just feel so tearful and anxious. Ugh, Im too scared to google it.

 

[chief]

hope you feel better soon, i used to be afraid to google crohns at first but ive found the more knowledge you have the better off you are. That way you are prepared, i stuck my head in the sand for a long time.

how long have you been on salofalk? that was the first med the GI gave me 7 seven years ago, how has it worked for you over all

 

[My Butt Hurts]

Awww, I'm sorry you are feeling anxious GF. It's really okay. I'm on Imuran right now and Remicade - 2 scary drugs when you read about them, but I am doing really well on them. Remember, whatever you read about the possible side effects are just things that may have happened to the people while taking the drugs. It doesn't mean that the drugs caused those side effects.
I was REALLY scared to start Remicade, but now I'm so glad I did.
And don't be sorry for rambling, that's what we're here for silly. Feel better.

 

[fenway1971]

Hi GF,
I was your exact same shoes a year ago. It suddenly becomes real when doc says we need to step up treatment. But don't fret. I now take 6mp/imuran and it's working.

 

[GirlFriday]

Thanks all. I am SO, SO glad to have this place to come for info and support. Yesterday as the GI was saying it to me, I thought I was going to start crying and I just though 'don't get upset, you can go home and talk to everyone on crohns forum about it.' Ha! Goes to show how much this place helps.
Chief - the salofalk is o.k I guess. They gave it to me when they initially thought my crohns was mild. Now my Doc said he is just keeping me on it because he believes long term it can reduce my risk of bowel cancer.
MBH - I'm so glad it has worked for you with no side effects, it has given me hope! I actually don't think I am going to google it. I just don't want to know possible side effects and obsess over it. I will just put my faith in my doctor and take it as it comes.
Fenway - it is a strange feeling isn't it? I've had this for over 2 years but yesterday was the moment it all became real and clear to me.

 

[fenway1971]

Thanks all. I am SO, SO glad to have this place to come for info and support. Yesterday as the GI was saying it to me, I thought I was going to start crying and I just though 'don't get upset, you can go home and talk to everyone on crohns forum about it.' Ha! Goes to show how much this place helps.
Chief - the salofalk is o.k I guess. They gave it to me when they initially thought my crohns was mild. Now my Doc said he is just keeping me on it because he believes long term it can reduce my risk of bowel cancer.
MBH - I'm so glad it has worked for you with no side effects, it has given me hope! I actually don't think I am going to google it. I just don't want to know possible side effects and obsess over it. I will just put my faith in my doctor and take it as it comes.
Fenway - it is a strange feeling isn't it? I've had this for over 2 years but yesterday was the moment it all became real and clear to me.

It is a strange feeling. And, it's ok to feel overwhelmed. I was diagnosed for 5 years before I had my "wake-up call". It's sad and sobering to realize our bodies aren't perfect inside and need to be cared for. I always felt invincible - and then you realize you're not. You need the meds - and they have been tested and used by countless folks with success.

The good that comes out of it, though, is that you start to focus on eliminating bad habits that make you feel sick, etc. and concentrating on good habits and everything you can do to manage the effects of this disease. My motivator is avoiding surgery - so I'm eating and living healthier and I've noticed it helping.

You can do it.

 

[JillianB82]

It's ok to "freak out" I think we've all had those moments. Sometimes CD does not seem "real" ya know?

I remember when I picked up my 1st script for Entocort. I opened it up in the car & was reading the drug information sheet that came with it. At the very top it said, "This medication is to help treat the symptoms of CD." I sat in my car & cried for an hour because I knew then there was no turning back.

 

[crohnsproof]

Hey GirlFriend! You have friends amongst you! I've been on Imuran for 19 years. If you can tolerate it like me, you'll be fine. My Crohn's is in my terminal ileum. That just means it's the most common place of all. Right above where the small bowel joins the large bowel (colon). That's why a lot of people are misdiagnosed with appendicitis, like me. Your appendix is there.

 

[Peggy]

As others say if it helps, take it, wht have you got to loose. I have had CD for 23 years its no fun, make the best of it. regards Peggy

 

[cheeky]

i'm on Imuran, and i have been on it for almost 7 months.... i totally understand why you'd be scared, what i've read about it freaked me out at first.... but i've been ok, only side effects i've experienced are fatigue and mild skin changes (a few whiteheads)... everyone is different.

just stay on top of your bloodwork, and monitor how you're feeling.

but i dunno, i thought Imuran was working... but the GI tells me my crohn's is severe and the Imuran isn't enough for me as my symptoms aren't under control....so now i'm gonna be starting remicade.


i don't wanna take Imuran AND remicade at the same time though.... i'll have to ask my GI when i see him in a few days.

good luck!

 

[DanM]

Hello Friday. I would not be too worried about Immuran or 6-MP I'm also on it. The worst thing you may notice is fatigue, but you learn to live with it. Look at the bright side, you are going from 9 pills to probably 1 or 2.

But a chest x-ray? I didn't have one when I started 6-MP.

 

[crohnsproof]

Seems that my Imuran has worked well over the years. My last surgery was from complications w/adhesions and a little fistula. I sure do wish there was a 'fix all' for everyone.

 

[cheeky]

Hey Cheeky - I think My Butt Hurts is on both Remi and Imuran - and I think she is in remission...hope I'm remembering that right. If I hadn't already tried Imuran, I'd be willing to give it a shot to boost my Remi right now.

thanks for mentioning it shantel... i have heard of people being on imuran while on remicade, but that makes me nervous... feels like my immune system would become shot!

i guess i'll read all the remicade threads or pm MBH if necessary... but first of all, i'll chat with my GI when i see him on the 14th.

 

[BWS1982]

Well, Azathioprine plus an infusion/injection biologic (Remicade/Cimzia/Humira) have a synergistic effect and empirically and scientifically perform better as a team than either one can in most cases separately. That's not to say you'll tolerate both or be one of those people who sees that combo help you more (I wasn't... Remicade did barely anything and was taken out of the equation, same with Cimzia, but I remained on Imuran), just that they help boost each other and work together to "double team" the disease.

You'll be okay GirlFriday, plus, if this many people are alive to tell the tale, obviously it doesn't harm as many people as your fears in your subconscious may be insisting.

I personally outweigh subduing the disease before it gets out of hand preemptively more than any potential/rare side effect or risk brought on by subduing the disease. Meaning, it's better to up the treatment than to let the disease gain steam on you, it's about risk to benefit ratios, and if your doctor monitors you well enough, you'll only be on it as long as the benefits are heavier.

 

[shazamataz]

The chest xray may have something to do with tuberculosis. I noticed on the blood test form i was sent out to get tested before my appointment this week that one of the tests was for TB. not exactly sure why, though I do recall spotting somewhere that TB can also be associated with terminal ileum problems - anyone feel free to correct me here!

They also ordered a HUGE number of liver tests by the way.

So, I guess they are wanting to talk to me about imuran - I am a bit freaked too!

 

[kjhngisd]

from what i know, the biggest concern about imuran is pancreatitis, GirFriday.
there are a couple blood tests that can test for it, so please ask your Dr. to test for it.
My wife was on imuran for a month or so and had a (very rare, i hear) bad reaction to it. And her Doc ordered blood tests, but not to test for pancreatitis, so we had a small panic attack. Turned out ok.

Meanwhile, I'll keep hoping you're better soon.
--kevin

 

[cheeky]

awesome.... thanks mike and benson!

sorry Friday, don't want to derail your thread... but it's still pretty much on topic.

bottom line - Imuran isn't as scary as you think.

take care

 

[katiesue1506]

If I hadn't already tried Imuran, I'd be willing to give it a shot to boost my Remi right now.

I thought I'd let you know you might still be able to get something for a combo therapy. I tried Imuran and Pred when I was first diagnosed and it did nothing for me so they took me off it and switched me to Remi, then Humira, the LDN, then Remi again... well fast forward 2 years... Remi stopped working (I was on the highest dose every 5 weeks and still only making it about 3.5 weeks) so they pulled me off that and put me on Humira again along with Pred and Imuran and I'm doing really well. I'm not sure yet if its just the Pred, but I've successfully tapered down to 20 mg without any significant signs of flaring.

So I guess unless you had a reaction to the Imuran or it screwed up your liver panels... you may still get benefit from the combo therapy.

 

[My Butt Hurts]

Hey Cheeky - I think My Butt Hurts is on both Remi and Imuran - and I think she is in remission...hope I'm remembering that right

i guess i'll read all the remicade threads or pm MBH if necessary...

Ummm.. hi Silly girls - scroll up to post #6 where I said "I'm on Remi and Imuran", tee-hee.
Yeah - I am in about as close to remission as I think I'll be able to get right now. I'm feeling very very good most of the time. Also - I haven't noticed any immune system, problems. Hate to jinx myself with flu season coming up, but last winter I was only as sick as every other average person, a few colds and one bad cough. My kids both had fevers several times, and I didn't catch them.

 

[cheeky]

LOL @ MBH... oops! missed that.


yeah i just spoke to the remicade coordinator and she was saying she knows of people who take both imuran and remicade at the same time...

but i have a cold right now, so i'm holding off a bit before my first remicade infusion.