Hi, I'm New

[sickranchero]

Hi all, I found out this forum and have been checking it out. Anyways, I have crohn's, for quite a while actually. I thought I would tell my story. I am 24 now, finishing up my college, one more year! I was diagnosed with crohn's when I was 10 years old. It happened during Christmas, I had the flu and just couldn't get over it. Finally after a lot of testing and eventually a colonoscopy, I was diagnosed. I was put on prednesone for a few months and was also taking sulfasalazine. I ended up in remission in a few months.

Well that was when I was 10 years old and I never had a problem for 11 years. All I was taking was sulfasalazine. Well, I had a physical when I turned 21 and noticed that my liver was a little elevated(ALT, AST). I did research and found out that long term use of sulfaslazine can cause liver problems. I brought this up with my GI doctor and he took me off sulfasalazine and put me on asacol. This is when life hasn't been the same. It didn't take long for the crohn's to flare, and I was in remission so long, which was very depressing.

So to make a long story short about the past 3 years, all I do is get on prenesone to get better. Then as soon as I taper off of it, I flare again. It pretty much sucks. I do quite a bit of research about crohn's and bring it up with the doctor. Unfortunately, when I bring up my research and ideas with my doctor he gets upset with me. I guess he feels that he is the doctor and feel threatened by my ideas. I just feel that obviously the repeating the cycle of steroids(about 3-4 times a year) is not working. I did start remicade about a year ago which helped. But now it only lasts about a week after the injection. I currently take prednesone(40mg), imuran(50mg), asacol, and remicade.

I really hate all of these drugs, and I'm afraid I'm screwing up my body in the long run. I do have a appointment with the GI in a few weeks so hopefully we can figure something out. I think the asacol is worthless since ever since I've switch to it I've never been in remission. The remicade is not as potent now either and my blood test results aren't good enough to increase imuran.

Anyways, this is my story. I'm sorry it is soo long, and I am complaining, but I just wanted to let you all know. If anyone has any suggestions that would be awesome! I want to get off of prednesone and stay off it. Maybe humira is an idea, I dunno. So, hello to all and thanks for reading.

 

[Kev]

Hey sickranchero.. Welcome to the forum... Don't worry about the length of what you
wrote (you wouldn't believe the length that one ol fart in particular goes to).. As for complaining, you can relax there too... that's one of the many benefits of this site. Its a place to sound off, to vent, to rant.. whatever you need to get you through a day.

Two quick points. Drugs alone won't provide an answer. A total regimen of drugs, diet, supplements, enzymes, rest ,exercise... and some positive mental imaging.. All are part of dealing with the illness. Second, if you think your GI isn't open to your ideas, etc., then perhaps a second opinion from another GI would be of use.

Just some thoughts from the longest winded ol fart you'll ever meet on this site...

Oh, and again, welcome... Complain all you want. At least here, someone listens

 

[Jeff D.]

Welcome to the forum. What Kev said is right. Try some probiotics and change your diet a bit to see what helps you to get better.

Write about whatever you want, how ever long you want and we will listen and try to help. Thats what happens with me a lot. It might take a day for someone to read your post but you will get an answer.

Feel better and I hope you can get out of the cycle.

 

[Cog]

Sorry to hear your story - going on and off the prednisone was a stage I went through also - including firing GI's - if they suggested the same treatment that does not work. http://www.crohnsforum.com/images/icons/icon12.gif Now I have a GI that listens and trys different drugs when needed - I agree with the suggestions of trying probiotics - watch your diet really closely and keep a diary. Wheat, cow milk, sugar seem common offenders - but your body will tell you soon enough. Good luck

 

[sickranchero]

Thanks guys for listening and the advice. I have been monitoring my diet and notice some things that do cause problems and I avoid them. I have been trying the Digestive Advantage from Ganeden, and it seems to help. I think it is a probiotic, however its only been about two weeks. I do admit, my symptoms compared to others are not as bad. My biggest problem is urgency to use the bathroom. I sometimes am afraid to leave the house, in fear of embarrasment, but luckily others share similar symptoms. Now that I am on prednesone and that Digestive Advantage I only use the bathroom about 3-4 times a day. I need to go and by some good soap and shower more, because the prednesone side effects are kicking in and is causing acne. Anyways, thanks again everyone!

 

[Sojourn]

the prednesone side effects are kicking in and is causing acne.

This is something I'm not looking forward to. I just started taking it a couple of days ago. It's been 4 years since I had it last and remember the acne. I would get these pimples under the skin on my neck that were almost like boils and took a long time to go away. I hope that doesn't happen this time.

 

[D Bergy]

I would try a new physician if you are not satisfied with the current one. Doctors are generally not real receptive to anything outside the scope of the current doctrine.
I wouldn't take it personally, they only know what they know and if you go outside of that knowledge base they simply do not have any experience.

There are doctors out there that use different approaches, but they are not easy to find.

I hope you can find some things that work for you.

D Bergy

 

[sickranchero]

So I'm back, and things are looking great! For the past two weeks or so I have been taking a probiotic called Bio-K. It has worked wonders for me. It took about a day or so and all of my Crohn's symptoms have gone away. I have gained weight back, have energy, and use the bathroom about once a day. Best of all, no diarrhea! However, I am still on 25mg of prednisone, but usually by this time my crohn's starts to flare again. So I am excited, I haven't felt like this in about 3 years hopefully it continues. I also have an appointment with the GI tomorrow, so we'll see what he has to say. Anyways, thought I'd give an update.

 

[D Bergy]

Glad to hear you are feeling better. It is nice to know that it is not always bad news with Crohn's

Best Regards

D Bergy

 

[soupdragon69]

Good to hear things have improved for you. Long may it continue!

Keep us posted.

 

[Sojourn]

Thanks for the update and congratulations on your progress. I had never heard of that probiotic Bio-k.

 

[sickranchero]

Thanks all for the kind thoughts. I saw my GI today, and discussed things. I'm down to 20mg of prednisone, and he said to discontinue the Remicade. So no I take the prednisone, Imuran, and Asacol. I have never heard of the Bio-K either, the lady at the health food store told me about it when I went in to try to buy Primal Defense. So far so good, what really interests me is if I continue feeling this great when I get to a lower dose of prednisone and off of it, I hate that stuff(the side effects). I'll keep ya'll posted, thanks.

 

[sickranchero]

Well, I made it down to 15mg of prednisone and my body finally couldn't keep up with the taper. It took about 5 days on 15mg and my symptoms started to return, mainly D and urgency. I contacted my GI and he told me to get back up to 30mg. I've been doing this cycle of prednisone for it seems like forever and I can never get past this point. I guess I will have to taper slower, maybe 2.5mg a week. I'm afraid that I am going to hurt something else in my body by these drugs. Oh well, I guess I'll have to deal with it.

 

[Sojourn]

I'm wondering why your doctor had you discontinue Remicade unless it was at your request. Prednisone is only a short-term fix and it's not surprising that your symptoms are returning when you start to go off of it. That's what happened to me the last time I was on it. My GI told me he hoped the Pentasa would keep it in remission but it didn't.

I'm currently on 40mg Pred and expect my symptoms to return when I go off it. But if my fistula closes, that will be good enough for me. I can go back to eating 1 meal a day and live with the diarrhea. I think eventually I'll end up on Remicade and hope it works as well for me as it has for others.

 

[sickranchero]

Sojourn, my doctor had me stop the Remicade because I was feeling better and when I got the injection the relief would only last a few days, my body got use to it.

When my GI told me to go back up to 30mg prednisone he also suggested starting the remicade again as well. I have been on 30mg prednisone for 3 days and I am starting to feel a little better, but it takes time.

 

[My Butt Hurts]

Sickranchero,
I was so excited, and all ready to buy some Bio-K.......... but then I kept reading your post. Rats!!
I too, was on sulfasalazine for quite some time, when it just decided to stop working. I'm on pentasa now, and it (along with a steroid taper) brought me down from going to the bathroom 15 times a day to 4 or 5.
My biggest fear also, is urgency.
I am on Librax, which is an anti-spasm drug for spastic colon. It seems to work a bit. For example, I now have 25 seconds to get to the bathroom instead of 5. Not great, but better.
My GI doctor gave me a prescription for cholestyramine. It's used for cholesterol, but he said it would help with the urgency. The problem with it, is that it will "suck up" any medication that you take too close to it. I think it's 2 hours after meds and 4 hours before, or vice versa. I'm basically on a 4 hour medicine schedule, so I haven't been able to fit it in. Soon I will be off antibiotics for fistula surgery, and will try to find a better schedule and try it.
I read somewhere that rectum excercises will help for urgency (like a vaginal kegal, but in your butt.) I've been trying it only for a week, but not consistantly. Can't tell if it works.
Anyways - I'm not trying to push all these drugs on you, just letting you know that our symptoms sound similar and this is "kind of" working (a bit). That didn't sound convincing - did it?
Good luck!

 

[sickranchero]

MBH, thanks for the advice. I have had real bad urgency in the past and many accidents. I was afraid to go anywhere, luckily I have awesome friends and family who understand. As of now I have no real urgency, I can feel that I need to go and I try to get there as soon as possible. I go about 4 times a day now. I would still recommend the bio-k or other probiotics, I has greatly reduced my D and urgency as well as other symptoms. In the past when I was on prednisone and not any probiotics, I would still have D and urgency, as if I had no relief. I think the hard part is to get the body to start absorbing things so the probiotics will start working. I use to use lotomil for urgency. Thanks for the advice though, and hopefully I can help at all.

 

[MarryZ]

Hi .. Great forum.. but how do I start my own topic? I can't find a button for it.. Or am I just being dumb. lol

 

[My Butt Hurts]

MarryZ,
You're not dumb. It took me a while to figure it out too.
(Maybe we're both dumb then.... ) When you're reading these, there is no place to do it. It's on the home page when you first log in. It has all the categories over on the left side, for example, Your Story, Support Forum, Food & Diet. You click on the category that you want to start your own thread (topic) in, and then click on "new thread". There is a big gray dot by it.
Also, if you want to get back to the home page, you go near the top of any page, near another gray dot, and click Crohns Disease Forums.
Hope that wasn't confusing.