New member. Some questions and my story and making new friends!

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What A Life
Regular Member

Date Joined Mar 2010
Total Posts : 116
   Posted 3/4/2010 9:22 AM (GMT -6)   
Hello everybody! I was previously a member of another forum but it seemed to die off over the past year or two. Glad I stumbled along here as it seems to be a very helpful community.

I'm a 28 year old male with CD. Diagnosed in 2000 (my senior year of high-school) when I weighed only 118 pounds. (Figured something was wrong at that point haha). Long story short; my only surgeries were two fistulotomys with setons put in for a few months. I was put on Remicade after that and I went into remission. I then quit my job which completely covered my remicade treatments and took a position somewhere else. Unfortunately, the new position's health insurance would only pay a small percentage and I didn't have money to pay thousands every 8 weeks for treatment. Thus, I went back to Prilosec and Pentasa. (And a couple other drugs thrown in there from time to time) Now I moved again and found a different job...

about a year ago I'd say, I stopped taking most of my medication and my quality of life is actually pretty decent. I hate to say it cause I was never a believer of it; but diet has helped me to an extent. Not eating as much, and watching what I eat just keeps my stomach running smoothly. I still get the occasional "D" or stomach pain, but if I find it start getting consistent, I take some meds. For example, a few days ago I could feel (as I'm sure most of us can tell when an episode is coming on) the start of a flare.. I started pumping Pentasas and Prilosecs and a week later (today), I'm pretty much back to normal. Just wondering if anybody else takes medication on a "need to take" basis... It's the first time I've done something like this, and it seems to be going okay thus far. Of course, we all have different cases as far as severity. When I first started out in 2000, I was in pretty bad shape and couldn't even look at food because my stomach hurt to do so.

When I was on remicade, I gained weight because I felt so good.. I was eating whatever I wanted whenever I wanted... Something not one of us should be doing! lol. Since I started watching myself when I couldn't be on the medication anymore, I have lost 60 pounds in the past 9-10 months. I feel good, and gotta say I look better too! lol.. Granted, this is not all just from diet; but I try to run 3 miles 4-5 days a week. (Fell off the wagon this week though)

My GI here says I'm a "ticking time-bomb" which scares me a bit of course; but until I feel the need to go for a visit and as long as I have my pentasa and prilosec to support me, I guess I'll take my own advice and keep loving life. (Bad idea? lol) Diet and exercise with a Pentasa regimen, hooray! :-p

The one thing that REALLY bothers me about my disease stems from my fistulotomies that I had years ago. It left a hole/deformity right near/connected to my anus. Although it doesn't drain anymore, it is a difficult area to clean. The past few years; I've been dealing with a foul smell coming from the area. To be honest, I've grown accustom to it and barely even notice it. It's my surrounding friends/family that let me know! I hate talking about this because I've seen it on sooooo many sites, people looking for answers of where the problem stems from. Fact is; most of these people have not had fissures/abscesses and do not have CD. We are in a different league and I know where my problem stems from... The fistula area. I clean the area well, so I know that isn't the problem. Since so many of us have had surgery in that general area; I was wondering if anybody suffered from similar problems or knows of any treatments. I've been to two specialists who did absolutely nothing.

Anyways; I'm gonna make this my new home and I'll be interested in hearing from you all! Let me know if you have any ideas about the fissure, or a diet and exercise program that you are on!!!

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/4/2010 9:37 AM (GMT -6)   
Hi What a Life and welcome to Healingwell. One thing I will tell you is you should stay on meds AT ALL TIMES. Pentasa is a very mild med and has little to no side effects for most. I learned the hard way what not taking meds can do to you. My remission ended with an emergency resection that was very traumatic for me. I have lived with this disease for almost 35 years now, and that is one thing I will continue to tell folks as I don't want anyone to suffer the way I did. You need to remember that Crohns is a chronic and incurable bowel disease, and even if you are feeling well and going on with your life, the Crohns is still in there doing its damage on a microscopic level. As that inflammation occurs and then heals it creates scar tissue and that scar tissue continues to build up until you eventually obstruct. Thats why your doctor says you are a ticking time bomb. This disease must be treated always.

Again welcome to Healingwell. I think you will find alot of wonderful support here. Stay with us:)

Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

What A Life
Regular Member

Date Joined Mar 2010
Total Posts : 116
   Posted 3/4/2010 10:21 AM (GMT -6)   
Thank you Nanners. I'll be sure to stick around. Seems to be a lot of good support!

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 3/4/2010 10:30 AM (GMT -6)   
Hello, What a Life. I wonder if the smell is coming from bacteria living on the skin in the recessed area. If you aren't too burned out on visiting doctors, perhaps a dermatologist appointment might be worthwhile to investigate what might be thriving in the area, and how it might best be controlled.

What A Life
Regular Member

Date Joined Mar 2010
Total Posts : 116
   Posted 3/4/2010 10:53 AM (GMT -6)   
Not a bad idea Writer! I did think of this "bacteria" problem originally. However, I overruled it as it is not a constant odor.. Comes and goes I guess you could say. Still worth me checking out. Thanks for the advice!
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