My crohns "adventure"

[shencer]

hello im spencer and am a very active 16 year old who loves to ski and bike but like all of you i am the "lucky" 1 in 5000 with crohns and this is my story

so i was a healthy kid until about 2008 when i started to have stomach pains and diarrhea. i just took a lot of immodium and that worked for a while. when that stopped working i went to the doctors and was diagnosed in late 2009 with crohn's disease (dont no where the inflammation is/was will ask doctor next time) and i was put on pentasa. the pentasa worked awesome for about a year. Then i got strep throat and was put on antibiotics which caused a (at least what i thought at that time) major flare. then put on prednisone which stopped it overnight and i was back to feeling great until this april when i had a far worse flare that caused me to be hospitalized for a week however steroids did their job again but took longer. so that about brings me to now when i am on remicade azathioprine and tapering prednisone ( that is always trouble i've been on it for two years but luckfully the side effects are vertually zero for me except a little bit of acne and moon face) and i just stopped pentasa because my doctor felt it was no longer necessary that the azathioprine and remicade will work but i am worried that stopping the pentasa will cause my symptoms to reemerge.so along with sharring my story i ask what are you guy's experiences with stopping pentasa? because im really nervous

 

[kiny]

There are no issues associated with using pentasa together with remicade as I'm aware off. If it makes you feel more comfortable I would discuss with your doctor about the possibility of taking them together with remi. Pentasa is the mildest drug there is for crohn and it has low bioavailability (doesn't have a major effect outside of the intestine)

Hope this helps.

 

[Angrybird]

Hello Spencer and welcome to the forum :ybiggrin:

It could be that your doc is stopping the Pentesa because it is thought to not be effective anymore considering your recent flare, as mentioned it is quite a mild medication so your crohns may now need stronger stuff to keep it at bay. When are you next due to see your doc, definetly ask about this so you can at least get clarification on why he stopped it for peace of mind.

Also with regards to the Prednisone you mention you have been on this for 2yrs? At what dose has this been and why have you been kept on it for so long? Have you also been on a calcium supplement whilst on this?

AB
xx

 

[David]

Hi Spencer and welcome to the community

Both Azathioprine and Remicade are extremely powerful medications. By themselves they will often lead to remission but in conjunction your doctor is throwing a whole heck of a lot at your Crohn's. Chances are, they are going to be more than enough so your doctor doesn't want to use the Pentasa as well, especially since you flared while you were on it. Pentasa only works for surface inflammation (think of it like a lotion for your intestines) and it sounds like your Crohn's is well past that so your doctor probably doesn't think it will help much, if at all.

But as the others said, it's your body. There's nothing wrong with having a conversation with your doctor and sharing your concerns. Maybe they can alleviate your concerns or maybe they will agree to put you back on. The key is to have open, honest communication with them.

Out of curiosity, have you made any dietary changes since being diagnosed?

 

[shencer]

thanks for the replies

doing good so far, haven't noticed much change. I just was nervous because I was feeling good before I stopped and didn't want that to change (but it is nice to not have to take 2 pills 3 times a day.)
and concerning the prednisone the highest i've been on is 40 mg but for only a couple weeks, now i am on 20 mg and tapering down. most of the two years i have been on prednisone it was in the 3 to 5 mg range.I think why i have been on it so long is the side effects are minimal for me so I didn't really have a desire to get off of it. I just never could get below that without not feeling good again. I do take calcium pills and had a bone density screening and it was normal. Dietary changes I have made are stopping caffeine, cutting back on dairy(this one is weird because in the earlier days of my crohns it didn't bother me but now it does), and avoiding fruit juices.

 

[David]

Have you thought of trying to cut out gluten and see if that helps? Maybe try the paleo diet or specific carbohydrate diet? It seems to help quite a few people here.