Crohn's Disease Forum » Your Story » Introduction - New to the forum


12-16-2017, 04:56 PM   #1
TheStallion
 
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Introduction - New to the forum

Hello everybody,

I am a moderate Crohn's disease sufferer and thought it wouldn't hurt to join a forum made up of people that'll better understand what I go through on a day to day basis.

After experiencing bloody diarrhea for two weeks, I decided to visit my doctor. He set me up with a GI, and I underwent my first colonoscopy in October. The initial diagnosis was ulcerative colitis, but at my follow-up appointment my GI changed her mind and said it was Crohn's. She said that the presence of a duodenal ulcer as well as the distribution of the ulcers in my colon made it looks more like Crohn's disease and less like UC. Most of my inflammation and other symptoms makes it feel more like proctitis, but with the presence of ulcers in my duodenum and ileum, I knew it wasn't just that.

I am still currently experiencing my first flare up. I usually have between 7 - 10 bowel movements a day and it's always worse in the morning. A lot of tenesmus occurring and mucus buildup on the toilet tissue.

If I'm sitting on the porcelain throne as the ball drops in Times Square, that will mark 4 constant months of a Crohn's flare. Luckily I'm not experiencing any pain. Just some moderate discomfort while straining in the restroom.

As far as treatment is concerned, I have been placed on several different ASA-5 derivatives including Lialda, Apriso, and now I'm currently taking 750 mg a day of balsalazide disodium. I was also on Uceris for a short time without any improvement.

On top of all this, I have gallbladder agenesis. My first duodenal ulcer of my life led to the discovery that I did not have a gallbladder. Not only that, but I never did have one. With that on top of Crohn's, I have cut out read meat nearly completely from my diet; I eat it only when cured due to jerky being 95%+ fat free. I no longer drink milk, eat ice cream, yogurt, cheese, sour cream, and have butter very sparingly. I notice a lot more blood in the toilet the day after drinking cow's milk.

I have also been using a small dosage of cannabidiol drops sublingually and they seem to do a little on cutting down the bleeding. Only from a 100 mg bottle, so I'm not sure if that's just a placebo effect. I have ordered a 750 mg bottle and will post what happens when I start using it.

So that's my condition and how I've been dealing with it in a nutshell. No end in sight, but I feel like I haven't given the balsalazide disodium much of a chance yet. I have only been on it for about 3 weeks and the effective therapy time is about 12 weeks.
12-16-2017, 06:50 PM   #2
ronroush7
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Welcome. It sounds like you could use something stronger to deal with the Crohn's disease. I don't know about the other drugs you mentioned but Lialda only hits the surface of the problem.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
12-16-2017, 06:50 PM   #3
ronroush7
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Welcome. It sounds like you could use something stronger to deal with the Crohn's disease. I don't know about the other drugs you mentioned but Lialda only hits the surface of the problem.
12-16-2017, 06:52 PM   #4
ronroush7
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Didn't mean for it to post twice.
12-16-2017, 08:52 PM   #5
TheStallion
 
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Welcome. It sounds like you could use something stronger to deal with the Crohn's disease. I don't know about the other drugs you mentioned but Lialda only hits the surface of the problem.
Yes, maybe so. I have a buddy in his mid 30s with severe rheumatoid arthritis and he swears by Remicade. It might have to come to that.
12-16-2017, 09:31 PM   #6
ronroush7
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Wish you the best.
12-16-2017, 09:38 PM   #7
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I'm new to the forum too, but welcome! I tried remicade and my body didn't keep it in my system as long as it should have lasted so I stopped taking it. But the few days it was in my system I felt great, it helped my artheritis too.
12-16-2017, 10:50 PM   #8
ronroush7
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I'm new to the forum too, but welcome! I tried remicade and my body didn't keep it in my system as long as it should have lasted so I stopped taking it. But the few days it was in my system I felt great, it helped my artheritis too.
Another biologic may be better for you.
12-17-2017, 12:17 AM   #9
ronroush7
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Another biologic may be better for you.
Ask your doctor first

12-17-2017, 12:23 AM   #10
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I have a history of various kinds of medications not working or quickly being used up by my body. I did talk about other biologic with my GI but he felt they would end up with the same, ineffective result.
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