Newly Diagnosed 24

[chris]

Well I have just been diagnosed with Crohn's disease. I had been having very bad lower left back pain for months and had been to my gp, a neurologist, and an orthopaedist without any significant findings. Then I started having blood in the stool and after a month or so figured it would be a good idea to get checked. Before I knew it I had a colonoscopy and the diagnosis.
Currently I am taking 4g pentasa and 50mg imuran daily. The imuran kind of scares me when I read about the side effects, but maybe some of you can shed some light on how the benefits outweigh the risks. I'm trying to be as positive as I can, but all the talk of surgery and an impaired lifestyle scares me. I think I have had this for a long time (very bad stomach pain at 16, sent to hospital, but no diagnosis) so I'm hoping that I can live a normal life. Is this something that could be a reality, or should I expect to be in pain and struggling frequently? Sorry for all the questions just trying to learn as much as I can. Any comments appreciated.

 

[snazzy]

Hi Chris,

I was the same with the Imuran, very freaked out to start taking it! I also take 50mg a day, all is good havent had any bad side effects - but they also monitor you close with all the blood tests I also had the horrible pain in my lower back, turns out my small intestine is very narrow from scar tissue - been put on 40mg Prednisone and no more pain. Find out this Friday if operation time arghh! Be positive, it sucks at the start coz everyone is different and medication can work for one person and not the next - trial and error. Can become very frustrating, but you will get there. Iv had symptoms since I was 17, now 22 (got very sick 3 months ago) found out I had Crohn's & Ulcerative Colitis, but feeling sooo much better now (coz of the prednisone, but dont want to be on it for to long coz of side effects). I know there will be days when im not, but I also remind myself that there are ppl out there alot worse off then me. I mean atleast we have food to eat that makes us not well :lol: Hope this helps and you will get there. Take care

Sarah x

 

[adidar83]

Sorry to hear about you pain. Although I don't really know anything about the meds you are taking, I hope they work for you.

 

[soupdragon69]

Hi Chris,

Welcome to the forum!

I can understand your concerns with the Imuran as I started it last spring having been diagnosed the tues before last xmas.

The list of side effects can be scarey but there are issues with all meds unfortunately. The way I resolved it was realising how sick I was and how much of an impact it had had on me lifestyle wise without really seeing that and coping instead if that makes sense? I thought that if this is what I needed to get my quality of life back then so be it! No I dont like the thought of it still but it is helping me along with my other meds so hang in there. One of the probs I had was nausea, and a friend suggested I take it in the evening instead and that has worked well for me. Each of us is different but there are ways of dealing with any side effects like that as an example.

Keep posting and keep asking questions ok? Welcome again..

 

[Kev]

Hi Chris.. Welcome to the forum. Congratulations on your rather speedy diagnosis. Getting the 'correct' diagnosis in a timely fashion can save one all kinds of grief. As for your meds, it's a different story for each of us. I started on Imuran and did well at 50mg for 2 weeks. then, when I ramped up to 100 mg, I ran into a problem. Had an allergic reaction. Had to come off of it, still up in the air as to the next course of treatment. Oddly enuff, before I went on it, I too was of mixed feelings about taking it. Then, having to come off it, and move on, I realized that of the options available to me at the time, it was least negative/most positive of my choices. Simply said, I wish I could take the stuff! I guess the grass is always greener on the other side. I hope it works for you.
Anyway, god bless, good luck, keep posting and let us know how you make out.

 

[chris]

Thanks for the information everyone. It really seems like the pentasa causes very bad dry mouth. Anyone else had this side effect? It feels like i constantly am drinking water, but no matter how much I drink the dry mouth stays. Going to have a bone scan done tomorrow to make sure I don't have osteopenia and they are also doing a lower back xray to see if the back pain is crohn's related. I'm so hopeful that they will get to the bottom of what is causing this sooner rather than later. Thanks guys and gals.

 

[Kev]

Anyone I've seen about IBD has told me that I 'MUST' drink a minimum of 64 fluid ounces of water EACH N EVERY day, on top of any other beverage that I consume.

 

[nancy78]

Hi Everyone,
I am new to this forum. I was dx'd in 2002 and have had ups and downs ever since. Recently they found a fistula and an abcess in my sigmoid and terminal illium. Now I am on levaquin, flaggel, and 60 mg of Predisone tapper. All this was discovered because I had severe cramping, fevers and vomiting, then my GI followed up with a CT scan and found that. Hopefully it will get better. I have been on Remicaid Infusions x 7 tx and it helped me but I had horrific side affects to the med. My liver was comprimised, increased billi rubin, jaundice, ichiness, and gall stones. Now I am seeing another specialist and she wants to try me on sulfazalizine. Any thoughts on it or has anyone ever been on it?

 

[Sojourn]

Welcome to the forum nancy78. I have not been on sulfzalizine but I know there are others here who have. I did have an intestinal fistula/abscess which I had surgery for drainage in July and then it was all removed just recently during a resection. Hope it will not come to that for you unless it would really help. I just got out of the hospital so I can't say much yet about my long-term well-being. But I am glad to have the abscess and fistula out of my body.