Had my appointment with the new G.I. today, Could really use as much help as possible

[KWalker]

Hey guys, I could really use some help, and please I'm not an idiot, I am a young, independent guy, and I'm really just trying to figure out what's best for me, so everyone please just hear me out before you jump to conclusions. I need to stress that.

Okay, here we go. I went to a (new to me) G.I. today, because I am now too far from my old doctor, and although I am pretty well symptom free, I just wanted to check on things. He kind of acted like I was just a dumb kid that didn't know what I was talking about, even after explaining to him that I've had crohn's all my life, and could probably even tell him a thing or two about the disease. He put me on Imuran (well, gave me a prescription) and got me set up for a scope. He also told me that after my scope, and I quote "we can try a few things and see if we can get your crohns to flare so we can take control of that" umm no thank you!

Here's my thing, and again please hear me out, as I'd say I'm fairly knowledgeable with crohns.I will list my concerns too so it's nice an easy to read.

1.I am completely symptom free right now, aside from D. and my abscess I just had surgery for.
2. I can eat anything I want, without problems. Anything!
3. I am on no medicine whatsoever right now, and haven't been on medicine for crohn's in over a year.
4. Why would you ruin a good thing? It's like the old saying, don't fix it if it isn't broken.
5. I'm too young right now, but I can't wait for the day I get to have children with my fiance. I just read again that Imuran lowers sperm counts and can cause birth defects. I don't want that.

I just can't justify trying to "trigger my crohns intentionally getting it to flare". Why would anyone want to do that? I don't want to start up on these heavy medications risking my sperm count, when I'm doing just fine without anything right now. I'm super busy with school right now, and for me to be starting these new medications again, with Imuran needing blood work frequently at the beginning, and even talk of Remicade, I just don't have time for that, when in reality I don't personally think I need that right now.

Literally, aside from my abscess, I would have totally forgot I had crohns. I've had soft bowel movements since I was a baby, so that's normal to me, but it doesn't bother me. I'm not running to the bathroom, I can control it, it's just not hard, and I'm okay with that. Now I know with the abscess, there is a possibility it will turn into a fistula. I had a big talk with the surgeon and she too agreed that surgery isn't a must for fistulas, as there are many people that live with them every single day.

I don't want to put myself through all this extra stuff, suffering for two days not being able to eat so I can do a colonoscopy, missing school and taking days to do blood tests for medicine, changing diets when mine is fine, etc.

Does anyone see what I'm getting at, or does everyone think I'm completely stupid with my thinking? I'm very proud of myself for where I am today with crohn's, only to start over and take steps back it seems. I would really love to hear what you guys think, but please be understanding with how I'm feeling about this.

Thanks guys. I will answer any questions you have for me.

 

[Grant]

Hi KWalker, is it possible that you misheard him. Because putting you on Imuran (azathioprine) is hardly likely to get your crohns flaring. Completely the opposite in fact.
Maybe it might be an idea to talk to him again about your worries regarding sperm count.
I dont know what else to say really, you sound ok in yourself & yet he's put you on an Immuno Suppressant. I think if your unhappy with the way it went I'd seek a 2nd opinion TBH.
Best Wishes
Grant

 

[KWalker]

Hey Grant, he's not hoping for the Imuran to make me flare, but he said they have some things they can try and see if I flare or how I react to them. I've never heard of this before so I would be really curious as to what he was getting at. He said that it will take 8-10 weeks before the medicine kicks in, but side effects could appear sooner, which is why he said I need multiple blood work tests. I'm really not sure why he put me on Imuran. He asked me what meds I have been on in the past, and it must be because I've haven't been on Imuran, that he thought he would try. I'm not sure. Am I making sense though? Who, realistically would want to go through all this stuff after being medication free, and doing great without it.

 

[KWalker]

Also, he didn't leave much room for me to talk. When I had something to say, he quickly moved on to the next question. I definately just felt like just another patient. There's only 3 G.I's where I am that I know of, and all three have really terrible reviews, mine being the greatest, but still not good.

 

[Terriernut]

Well, I think you might have misheard the 'put you into a flare'. I'd ring back and check that. You can certainly be on other medications to keep you from flaring besides imuran. For instance mesalsalzine of some type.

As for just carrying on...Meet Stan. He's a nice little stoma I picked up xmas time last year for not taking good enough care of myself. No meds. Yup. Its the damage that goes on inside of you that you arent aware of that you need to worry about. The scarring, the inflamation that causes it. Then, you get a nice little stricture, and before you know it if you carry on, boom..bowel perforations. Never mind those nice little fistulas that can go just about anywhere...mine was in a fallopian tube. Or how about the bladder...peeing **** is not nice.

Thats Crohns. Its ugly. So, me...I HATE MEDICATIONS...am now on 6mp to save what is left of my bowel.

Not to scare you, but crohns is nothing to ignore. You may be feeling fine now, but in 2 months be in hospital. Thats why we have to keep it under control.

Please, get regular colonscopies, take at least mesalazine, and take care of yourself.

 

[KWalker]

I do understand that part of it. Let me clear this up too. He did not say Imuran would make me flare, I think he was talking about foods and that to see if they affect me. I'm okay with the colonoscopy to be honest. I know it sucks, but it has been a long time since I've had one, and I would like to see what's going on. Is there a possibility maybe my crohns isn't as bad as some others? I mean really, I could go for chinese, mexican, or any other food I want and not have the problems some would have immediately after.

My brother actually has a stoma now, so I am familiar with that as well, but I'm sure at some point you must have felt pain or symptoms leading up to it. I have absolutely ZERO pain whatsoever. My fiances step father also has crohns and has been medication free for 5 years now with no complications.

I'm not doubting anybody, but I just want to see both of it.

 

[Terriernut]

Oh, I eat mexican etc now. Always did. Always ate whatever! Drink and all, smoke, you name it. Big stress, that is what caused flares for me...not foods at all. Still the same. So yeah, you arent unusual. What I'm saying is, its the damage going on while you THINK everything is fine that will get you.

No, the reason I said what I did was because I DIDNT have much pain at all! Just the big D. Occasionaly blood and mucus. Honestly.

Then...I got pain, and it hit like a hammer, next thing I know I'm in the hospital and almost dead. FFS that is SCARY.

I didnt know I had Crohns. It was 'suspected'. My first symptoms were in my early 20's only the big D. Nothing else. That's all I ever had. Now a good look at my colon and it looks like Hiroshima after the bomb. Thats why taking even a light drug like pentasa, or asacol (mesalazine) wouldnt be a bad idea. It doesnt do any harm. And if you do have a light case for now, it may KEEP it that way, and THAT is what you want...believe me. You certainly dont need Imuran for now by the sounds of it! I took Asacol for years until I couldnt get the GP to fill it. Didnt have it for about a year. Then...thats when all hell broke loose.
Misty

 

[KWalker]

Hmm, okay so this doctor gave me a prescription for Imuran. Are you saying I shouldn't take it? I don't want to take drugs that are going to affect my ability to reproduce later on in life. I really don't mind having this scope, its just the rest that I'm leary about. I've been on Remicade, Humira, methrotrexate, and truck loads of prednisone. Is it possible that all of these drugs have killed off a lot of my crohns? I've had crohns for the majority of my life, I'm definately not at the beginning of this.

 

[Terriernut]

I think you should get a scope before you make a decision. When you see it for yourself, you may make a decision.

If you've been on all those meds before...???? Nothing kills Crohns. But dont forget, Crohns can be passed on genetically. As you can see for yourself it runs in families. If you've been on the 'big guns' before, they have probably kept you from flaring. On no meds at all, you have a good chance of flaring in the near future.

Only you can decide what is best for you and your future. But you cant cure crohns for the time being, only keep it 'sleeping'. Personally, I'd like to knock the **** outta it until next century, but no drug does that...yet.

 

[KWalker]

Yeah I have been on those drugs. I was kind of like a guinea pig for my old doctor. I do know that it cannot be killed, but I know it can definately decrease in severity over time. Like I said, I know somebody that has been completely off medication for a very long time. I agree with what you said about the scope. Would you avoid the Imuran for now then?

 

[KWalker]

I am aware that crohns can be passed on genetically as well, although there is a very small chance. My concern is the birth defects that can come from all of these heavy drugs. I really do believe that there comes a point when medicine becomes more harm then good. Sure they could help crohns, but what else are they destroying inside of us at the same time?

 

[blessedwithfour]

hey there, im new here but know how you feel. im feeling pretty good these days and find out whether or not they want me to start Imuran. im noot at all keen on it and have been fighting it the whole way, because i hate what i read. ive had the same things all told to me thgis week, being new i think ive undererstimated the seriousness of it all. not sure what will happen on thursday, but i feel just like you also fyi- my bdr prescribed this drug oct 6 along with an enzyme test to see if you are even compatiable to take it . i get my results thurs- did you take this test? my dr said its very important as some can actually die if they do not have the enzyme.

 

[KWalker]

Oh, that's really awesome to hear you can die if you don't have the enzyme, as my doctor did not mention that. He told me I'll have to do blood tests to see if I have a bad reaction, but did not mention what you just did. I haven't filled the prescription yet either because I just got it today, and am hesitant on what I want to do. What are your doubts with Imuran? I've just heard too many bad things about all these drugs, and have read some horror stories online about Imuran.