Crohn's - advice??

Hey everyone.
My name is Claire and I just turned 20.
I've had Crohn's Disease for 14 years, since I was just 6. I've never had a chance to talk to anyone else who has it so this is all very new for me.
I've tried every medication out there. At the moment, I'm on 6 mercaptopurine but I'm having some trouble with it. I think it's the cause of arthritis in my feet and erythema nodusum on my calves that I've had for the last six weeks.
So, I'm :depressed: I've had problems with ever medication I try.
Nothing is working for me in the last two or so years.
Before, when I was sick, no matter for how long, I'd eventually find something to help me achieve remission. I'm at my wits' end at the mo tho.
I'm not agreeing to surgery. It's my biggest fear.
I recently undertook a four week exclusive liquid elemental diet in a bid to attain remission. I improved but lately I've lapsed again. The usual - getting up all night to use the toilet, pain, nausea, lethargy. It's tolerable at the mo but I know it'll keep getting worse unless I do something.
I take elemental diet by night and have since I was 16. I pass an NG tube myself. It helps me so much. Weight wise I'm a lot better for it.
I'm afraid I'll have to come off the 6mp and I'll be left out of options except for surgery. I can't walk the pain in my legs is so bad. But I'm so reluctant to come off it as I've tried literally everything more than once.
This is my third time on 6mp. My first it was great for two years. Then I got sick. The second time I got severely neutropenic and almost died on it. Yet I'm on it again. I don't really have a choice as nothing agrees with me.
What are your thoughts?

Hi Claire and welcome to the forum.
Sorry you have to be here - but it IS a great support system.
Are you sure you have tried every single medication?? Maybe if you list them all, we could see if maybe there is something that you haven't tried, and point you in that direction.
I know that surgery sounds scary to you, but many people on here have had very good luck with long remissions from their surgery. If it's an option for you (my Crohn's is too spead out for that I believe) and the meds aren't doing it - it might be worth looking into.
I did NOT want to try Remicade, I was scared to, but am having very good luck with it right now. I'm so glad I decided to try it.

Have you tried Imuran? It's very similar to 6mp I know - but maybe it's just different enough to work for you without the side effects. Also - maybe something milder can help you too. I'm on Imuran and pentasa besides the Remicade. Sometimes you need a combo of more than one thing to work.
I'm sure others will have advice too.
Welcome again!

Hi Claire, welcome to the forum. Have you looked for a second opinion? I agree with MBH, sometimes it does take the right combo of medications. I have had surgery 4 times and would do them all again in a heart beat. I guess I'm lucky, even though my Crohns has always been severe it is always localized to one area. Why don't you list all the different meds that you have been on and what fears you have about surgery and I'm sure there will be someone on here who has felt the same or been through the same list of meds. Don't give up, I'm sure the answer is out there. When do you see your GI again? Good Luck and I hope things start to turn around soon for you.

hi claire
wow we have similar situations you and me! im 19 and was diagnosed real young too, at age 9. i also have had arthritis in my ankles so bad i cant walk and the erythema nodusum. both of these in the past year though, and i never had those symptoms ever before.
surgery has been suggeested to me many times in the past years and for me too it was my biggest fear. just in the past week though ive had a huge change in thought and am now ready to accept it if need be, but i totally understand where youre coming from.
have you ever been on 6-mp and remicade? i was on that combonation for a bit when i was younger and it helped me.
like the others said, a list of the treatments youve tried would be helpful, so then youll hear from people who have experience with them.
welcome btw!

Hi Claire,

I does sound like you are going to need some surgery before things get worse. People have years in between their surgeries, but unfortunately as people with Crohn's we are pretty much going to have to visit that OR at some point. So far I have only been in for fissure/fistula repairs, but I am waiting to see what damage was done from the last flare up before my docs look at surgery etc, again.... Do they have you on some penicillin or something for the erythema nodosum? Mine cleared up quickly once I started on that..... BUt yer right, they get to the point where you don't even want to walk...I had big ones on my feet...O lord give us strength...I used to curse the entire way from the bed to the toilet and then back again....

I wish you all the best but at least at your age claire you will bounce back from surgery a lot quicker than some of our friends on here that are older as their bodies don't heal as fast...You are only young and depending upon the extent you would need done, you could feel much better for quite a long time as long as you don't wait too long.

All the best and we are here anytime you need us. XOX

Hi Claire

Keep your spirits up. I've had 2 operations and slept thru both!
The recuperation was tedious but hey.... it was worth it.
Just think of it as an expensice plumbing job.
Email if you need a lift now and then or more info on ops.

Harry

Update

Hey everyone,
Thanks for all your replies!
Um well I can't remember every medication off the top of my head - seeing as I was so young when I was diagnosed my parents were the ones who looked after all that for many years - but I'll try to give a general list of what I've been on before.
Prednisolone - gave me osteoporosis.
Sulfasalazine - made me bleed.
Dipentum - made me bleed.
Asacol - made me bleed.
Pentasa - made me vomit violently.
Imuran - gave me erythema nodusum.
6mp - is giving me arthritis.
Methotrexate - worked brill for 2 years but became toxic to my system.
Remicade - allergic to.
Humira - gave me arthritis.
Flagyl - doesn't make a significant difference.
Entocort - doesn't make a significant difference.
I think that's about it but I may have forgotten one or two. As you can see, I've tried a lot of things. I also take elemental liquid by night.
My Crohn's is severe but very spread out over my large intestines and some of my small intestines are affected too. I currently have a stricture of the ileum and a fistula connecting the large and small intestines. I've had a second opinion of another GI and also a surgeon who specialises in Crohn's and UC. Everyone kinda agrees to hold out as long as possible on getting surgery as I've come this far without it and I'm quite young and it would be necessary for me to have a colostomy bag and it is not guaranteed to be reversible. It's more the bag that I'm afraid of. Terrified actually. I'm only just 20, I'm supposed to be having fun in college - not worrying about losing one of my basic bodily functions! :ymad:
That's about it really!! I stopped taking the 6mp 3 nights ago and my legs have cleared up a lot. Thanks a mill to everyone who replied I appreciate it a lot!! Kello22 it certainly does seem like we've very similar situations! I'm so glad I can talk to someone who understands exactly!
Everyone's thoughts on this?

I know it sucks to have things be the way they are...but I know people with the bags and they are much happier now then when they were suffering constantly. Someone I know has had a bag for 10 years and while I'm not buddy buddy with her, I am around her enough that I should have had a clue, but no clue...she'd had a bag for 10 years and I had no idea. If it takes the pain away, and as unappealing as it sounds, (my doctors are mentioning a temporary one if I need to go in for surgery for my large intestine), then I will take it rather then make my insides rawer...

AND DANG you haven't had great reactions on a lot of those drugs. I know the arthritis pretty much every drug they prescribe for us has that as a side affect which sucks....

Keep us in the loop of what you/your doctors decide to do.
Much love.

CKnowsBest said:

I'm quite young and it would be necessary for me to have a colostomy bag and it is not guaranteed to be reversible

Click to expand...

GAH thats exactly what ive been told too. i would feel so much better about it if i knew it was temp, but the PERMANENT possibility still scares me. like you said, youre only 20!! thats a lot of life left to live with that choice.

BUT.....i see it the other way too. whats the point of living life if you are in pain and suffering constantly? if the bag can fix that for you, then of course its worth it.

i dont mean YOU you in any of this, just a general you me and everyone else who faces this.

and for me its gotten to the point that i have control issues with my bowel anyways, so a bag is probably far less embarrasing than that! thats what ive realized for myself recently and i think i can accept surgery now if i have to.

mostly just spilling out my thoughts here. sorry to probably not be much help!
*hugs*