New to this- seeking advice, encouragement

[Aubree]

Hey guys so I just turned 18 and for the last 7 months I had been having very frequent diarrhea, so I sought to medical help. I first went to a pediatrician who perscribed antibiotics for C.Diff that worked, but as soon as I ran out I was having my typical symptoms again. After I lost nearly 15 pounds I went to a GI doctor who once again tried a stronger antibiotic, but it only worked for a short period of time.
I recently got an endoscopy/colonoscopy which revealed swelling in my upper and lower intestines, and the Chron's began. I am now on Asacol(3x a day) and have been on it for about a week and a half with very little improvement. I was wondering if anyone else had any trouble with the drug taking a while to "kick in"?
Also, I was planning on attending college in the fall, but i have become hesitant to go because of the bathroom situation. If anyone lives on a college campus, I would be interested in talking to you about solutions, or whether or not I should go?
Thank you to anyone who offers help, I'm very nervous about how this disease is going to affect my life.

 

[Jennifer]

Hi and welcome to the forum!

I have been on Asacol for many years (not currently on it anymore). It does take some time to kick in although I've never taken it by itself. I was usually on 6MP as well (and steroids while in a flare) but to me it makes more sense to be on Asacol with a steroid (prednisone or Entocort) until the Asacol has a chance to kick in. After that you can wean off the steroid and see how you do with just the Asacol. What it does is helps prevent more inflammation but steroids are much quicker at getting rid of the current inflammation.

I lived off campus when I went to college so I imagine that the bathroom situation would be similar to a public restroom (least that's how it was at my friend's campus when I went to visit him). I hate bathroom stalls and have a really hard time using them. In the public stalls I take my phone with me and play games and it helps a little. Listening to music may help a lot more so you can't hear anyone come in and you can just get your business done and get out but I haven't tried that out yet. Sounds good in theory.

Is living off campus not possible at your school? Even if its not, I wouldn't let the bathroom issues keep you from going to college. If you're too sick to go I understand that and taking a break may be a very good idea but if its just "what if" fears then you may owe it to yourself to give it a shot because you never know how well you'll do until you try. Don't let it control you and your life.

 

[Angrybird]

Hello and welcome to the forum. I agree that usually a course of steroids gets used to get inflammation under control and help keep it at bay whilst the maintainance meds kicks in which can take a few weeks. Alternatively you can perhaps go on a liquid only diet for a while as this can also help with symptoms and getting things a bit calmer inside. When are you next due to see your doc? Perhaps it is worth discussing these options with them.....

AB
xx

 

[Aubree]

I am supposed to go see my doctor in 2 weeks. I will definitely bring up those options. Thanks for the help!

 

[David]

Hi Aubree! It's great to have you here. Though I'm so sorry to hear of all your troubles My heart goes out to you.

You mentioned that the Crohn's Disease is in your "upper and lower" intestines. When you say upper intestines, I assume you mean small intestines? The problem I have with the Asacol prescription and that being the ONLY medication you're on is that it is specifically formulated to be released in a manner where it treats inflammation of the colon. It is designed for Ulcerative Colitis which is ONLY in the colon. Now, it can help some with Crohn's Disease of the colon, but for it to be the only medication you're on when you have active disease of the small intestine and it acts topically is an oversight in my opinion and I would strongly suggest you discuss the situation with your doctor.

We're here for you anytime you need us

 

[Aubree]

Thsnk you so much for your advice and by upper and lower I meant small and large, my bad. Do you have any suggestions on which drugs I should be on in addition to Asacol during my flare up? Anything that has worked for you in the past?

 

[David]

Hi Aubree,

I have a different form of IBD called Lymphocytic Colitis, so most of our treatments aren't quite the same. However, we have a treatment forum will all kinds of information on various options. If I had Crohn's Disease, one mode of treatment I would incorporate into my treatment regimen would be enteral nutrition.

In my opinion, one of the most important things for you to do is educate the heck out of yourself regarding this disease. Become an expert in the various treatment options, vitamin and mineral needs, diets, and more. This will allow you to advocate for yourself and ensure you're getting the treatment you deserve. At present, Crohn's is a lifelong disease so the more you know about it, the more proactive you will be able to be which is important to its proper management.

We're happy to help you with every step of that education process