Back after 25 years...

[opieshuffle]

Well...I had an amazing run. I consider myself one of the real lucky ones.

I was diagnosed with Crohn's back in 1984. Spent all of my teen years bouncing up and down on Prednisone. As soon as I tapered off to a certain level, it would flare up again and in some cases I'd be bed ridden with fevers due to blockages. In 1988 while in 1st year college, I had a small bowel re-section done. Rested. Got well. Started taking a packet of Questran a day to control the "looseness" and been that way ever since. I have honestly had ZERO problems since, which is why I count my lucky stars!

Until now. Just got back from seeing my GI 20 minutes ago. Had a scope done a few weeks ago (started having pains this summer which turned out to be gallstones of all things!) just to see what's going on and sure enough...Crohn's is back... sigh. It's mild (in that nothing is going crazy yet!)but he wants to start me on Imuran.

So here I am...joining the forums to get info about Imuran, and see what's been happening in this world these days. Like I said...I had an amazing run and I hope these drugs can control things.

Thanks for reading!
Chris

 

[scottsma]

Well that's sad Chris,but welcome to the forum.There's lots of info on Imuran and lots of people on the forum using it.I've not had any experience of it,but I'm sure some-one will be along soon to talk to you.

 

[Angrybird]

Hello Chris and welcome to the forum

I am sorry to hear that the tum is acting up on you again, are you going straight onto the Imuran or have you been put on steroids in the interim to settle the tum? I myself have been on this previously and it did to a great job at keeping things calm, do you know whether your doc is doing any checks blood test wise to confirm that your body will tolerate this well? We do have a sub forum for this med that is worth checking out for further infohttp://www.crohnsforum.com/forumdisplay.php?f=64.

Wishing you all the best and pls keep us updated on how you are doing.

AB
xx

 

[opieshuffle]

Thanks for the welcome!

AB... Imuran only (as well as my daily dose of Questran and B12 pill). He said it's not severe enough to hit the steroids (thankfully as I never got along well with the Prednisone) so I'll give it a shot and see what happens. I also just joined a gym and have been trying to get "soccer ready" anyway, so hopefully getting back in shape will help.

I eat well (healthy...not processed foods) and stay pretty positive. So...as with anything in my life, I'll just keep plodding along and see where it all leads.

Chris

 

[tots]

Sry your having trouble again. Hopefully catching it now will get you back in remission quickly.

This is an awesome site, welcome.


Lauren

 

[CLynn]

Wow, Chris, that was a great 25 years, I bet! I can only imagine going that long between bouts, but I still won't complain too much. This forum is great, if the world had been online back in the 80's when we were diagnosed, it would have been fantastic, wouldn't it? When are you starting the Imuran?

 

[opieshuffle]

Hey CLynn,
I was supposed to start yesterday (when I got the pills) but I have this nagging feeling in my gut (hilarious right?) that this isn't a good idea.

I keep thinking that if it hadn't been for my gallbladder and getting checked out, I wouldn't be thinking twice about my Crohn's. I'm not suffering in any way. I feel good. No symptoms. No problems. So why now introduce a pretty serious drug into my system? I know the Crohn's is stirring but how about staying healthy and eating well and doing a scope in a year to see if it's gotten worse?

I keep going in circles...

Chris

 

[rollinstone]

Hey Chris, I don't recommend that, I'm not a doctor but I would listen to your GI, as long as bloodwork is done for imuran you can avoid complications but catching them before they become real problems. And if it turns out your body doesn't hate the drug it will be pretty effective in getting you in remission and keeping you there. I didn't want to go on imuran when I was first dx but I'm glad I decided to, untreated crohns would be much worse in the long run in my opinion. Especially if you have already had a surgery. Hope it settles mate, good luck

 

[Tesscorm]

These are tough choices to make and, given your history, I can certainly understand your hesitation at starting imuran.

My son, 18, very recently began remicade infusions. He was diagnosed May '11 and has been only on enteral nutrition therapy (liquid diet initially and then supplementation only) since diagnosis. On his recent transfer to an 'adult' GI, his new GI confirmed that while he looked good, felt good (no outward symptoms) and his bloodwork was all good, MREs and scopes did show continued inflammation in this terminal ileum. GI was adamant that treatment was needed or the continued inflammation would eventually lead to further complications.

I fought the decision as much as I could and researched all options. My son was worried about future complications and wanted to commence remicade. I had to agree as through my research (here and otherwise), I found that there are many who outwardly showed no signs and then found themselves facing surgery and other complications. While the meds do certainly carry risks, no treatment/undertreatment carries its risks. :ymad:

If you believe you have some time and your GI does not believe complications are imminent, I would look into low dose naltrexone. While I couldn't take on the responsibility of convincing my son to NOT follow his GI's recommendation, I do regret not having pushed earlier to try LDN. There have been a number of members here who have found some success with LDN and it has very few side effects. While the drug itself is not new, it's use for Crohns is more recent and there have only been two or three small studies. With only these small studies, most GIs hesitate to prescribe the medication as it hasn't been proven to their satisfaction. So, it may take some effort to get a prescription. (Although, my son's GI had initially been willing to prescribe it until tests showed the amount of inflammation.) I do think it's worth exploring LDN - the treatment section has a subforum for LDN with lots of info.

There are a number of people who have found some success with diets, juicing, etc.

With any treatment, especially something a bit 'untraditional' (LDN, diets, etc.), I would be sure to get tested as regularly as possible (specifically imaging as bloodwork doesn't always reflect what is going on inside).

I'm glad you've found this forum! It's been invaluable to me in learning about Crohns!! Feel free to ask as many questions as you have...

 

[CLynn]

Hey CLynn,
I was supposed to start yesterday (when I got the pills) but I have this nagging feeling in my gut (hilarious right?) that this isn't a good idea.

I keep thinking that if it hadn't been for my gallbladder and getting checked out, I wouldn't be thinking twice about my Crohn's. I'm not suffering in any way. I feel good. No symptoms. No problems. So why now introduce a pretty serious drug into my system? I know the Crohn's is stirring but how about staying healthy and eating well and doing a scope in a year to see if it's gotten worse?

I keep going in circles...

Chris

I understand what you are saying, Chris, all too well. And the first time I was put on Imuran, I was freaked out about it, it was going into winter, I work with the public and my daughter was 2, so imagine the germs I come into contact with on a daily basis, didn't like the thought of lowering my immune system like that. But honestly, it got me in remission faster than Prednisone and Flagyl ever did. Once I had been in remission for awhile, I came off of it. And I didn't need meds again for quite a few years.
Last winter, a new GI (new to me, my original GI left the state) put me on Aza, the generic Imuran. I didn't do so well on that. So once in remission, I came off of it on my own accord, but I don't recommend that to anyone, I was just frustrated that the GI wasn't listening.
I have never liked the idea of staying on it long term, I will say. But others might disagree. I feel like once I'm a few months into remission, let me off the meds.

 

[opieshuffle]

Honestly...my biggest hangup isn't the drug itself, it's the possible side-effects.

I play contact sports (soccer / hockey). On week-ends I work with metals and get cut quite a bit. I'm always the one person out of the group who never gets sick in the winter. And I like all of that in my life. So the idea that my immune system is going to be compromised, that getting cuts and bruises might be more severe, not to mention all the other side effects I keep reading about, and I'm very hesitant.

I know it's better than getting in bad shape again. I remember what it was like to be doubled-over on the floor waiting for a cramp to pass. But I'm not a pill person. I hate drugs and shy away when I don't think I really NEED them. (hell...I have to have a pretty severe headache before I'll take an Advil) And I have a high tolerance to pain, so I'm afraid I'll shrug off what might be some bad reactions to the drugs as "par for the course".

In short: I guess I'm being a 45-year-old baby! LOL

Chris

 

[Tesscorm]

I have some of the same concerns for my son... he plays hockey, etc. I also worry about skin infections related to 'dirty' hockey equipment, etc. It's too soon to tell with my son (he's only had two infusions) but it is something I am worried about. Something I plan on discussing with the GI at the next apptmt.

WARNING!!! Do not take ibuprofens!!! I sometimes wonder if that's what triggered my son's crohns. For months before diagnosis, he'd had back pains from a previous injury, doctor suggested advil before practices/games to head off inflammation. As he was on the ice 5, 6 times a week, he was easily taking that many pills (looking back, I do wonder what I was thinking... why I would have thought that that was okay! :ybatty. In any case, ibuprofens are hard on the gut and not recommended for those with IBD. Tylenol is okay...

Do check out the LDN... really wish I had insisted on it earlier before this GI became adamant that something stronger was necessary!

 

[KWalker]

Hey from St Catharines! I was recently told by my old doctor to go on Imuran or he would refuse to see me anymore so, well, he's not my doctor anymore lol. Although people to have success with it, I didn't like the side effects of it either and didn't find it was for me.

He kind of motivated me to go the diet route because I realized that every doctor I went to would just try and push drugs at me and that wasn't what I wanted. I started the SCD diet in January of this year and if you have a look at my SCD journey link I have posted in my signature you can see how it has worked for me and consider whether that is a route for you to take or not

 

[opieshuffle]

Hey!
Thanks everyone for all your input. I'm calling my doc today to have a more in-depth discussion about it and possible options. I didn't know anything about the SCD diet, but interestingly enough, my wife is an amazing cook and we eat pretty darn close to it as it is. (just need to cut out a few more things) Maybe that's one of the reasons I've been in good shape for so long.

Anyway...we'll see what the doc has to say and go from there.

Chris

 

[CLynn]

Keep us posted, Chris!

 

[opieshuffle]

Can't get in to see my doc until next Monday but started the diet yesterday. (after a horrible gall bladder attack during Saturday night... I'm really considering getting it yanked out for good!)

Haven't started the IMURAN yet (told the doc in the message as much) So today is day two of the SCD. My wife has been AMAZING in tracking down ingredients and recipes She loves to cook so is excited to see how creative she can get. We're also lucky in that we have lots of options in Toronto to get what we need. When we find some good stuff that tastes great I'll post some recipes in the Support forums.

Chris

 

[rollinstone]

Good luck buddy, my advice is only advice but I was reluctant to start on imuran at first, but SCD wasn't enough for me, even on SCD and prednisone i still had blood in stool, imuran seemed to be the only thing that worked, I am not currently following SCD 100% but im
On like a 90% paleo diet, with the exception of rice and lactose free milk, but still doing well!

Anyway my point being, Dont be scared to start the imuran, it could knock you back into remission, and IMO in conjunction with the diet will be a much stronger treatment option than just diet alone

 

[opieshuffle]

Thanks Joshuaaa. I appreciate your input.

I'm going to talk more in-depth with my doc and then make a decision.

 

[leahsmom]

Hey Chris welcome to the forum,
Just want to second what tesscorm had to say on the LDN. If nothing else try to do a little research on it while your trying to decide on imuran or not. My 15 yr old takes it for crohns. There's a low dose naltrexone (LDN) forum on here as well, you may get more information there. Best of luck to you on whatever you decide.
Sharon

 

[opieshuffle]

Well...here's my update. I had a gallstone blockage last week and had to have an emergency removal. So I've been laid up with that since Wednesday. I DID finally get in to see my GI on Friday (right after the gallbladder removal) to talk to him about my IMURAN concerns, diet etc.

He said "diet has nothing to do with Crohn's". Point blank. NO discussion. Blank stare from me. He went on to say that it's all completely up to me with how I want to proceed (IMURAN / SCD / Paleo / healing stones / witch doctors) but it's me gambling with another bowel re-section if I don't take any medications. He did concede that diet will have great effect in dealing with symptoms etc, that everyone should cut out refined sugars, look at possibly eliminating wheat and all that, and even suggested adding some probiotics, but that diet has nothing to do with causing Crohn's or getting rid of Crohn's. So there...

Do I know what I'm gonna do now? Well, I'm more confused than ever, but leaning more to taking the IMURAN to see if it does anything, and maintaining a healthy diet. Chronicling what foods work and don't with me. (pork bad / beef good!) And trying to stay health (gym / sports).

I'm not going to start IMURAN until I'm healed from the surgery as there are a lot of funky things going on in my bod right now and I don't want to confuse a bad reaction to the drugs with something happening due to the surgery. I'd like to be hitting the gym and playing sports when I start the drugs to give my body the best chance possible. In the meantime I'll continue to eat healthy and stay positive.

Chris