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Ulcerative Colitis
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Posted 10/3/2012 2:01 AM (GMT 0)
I have ulcerative proctitis, diagnosed 7 years ago after suffering for at least 10 years. I have had almost like clockwork two flares a year with some mild flaring in between two major flares a year. This past March I had my normally scheduled colonoscopy. All came normal....as in no further progression showing mild inflammation. At that time I was on Apriso 4 pills a day with probiotic every day as well. After the procedure GI told me to try Canasa suppositories for 3 or 4 days a week. I did that and did well until about a month a half ago.
I started having lots of diahrea, only a small amount of blood, lots of stomach cramping, then 14 days with constipation. Call to the GI said to use Entocort and up Canasa to 7 days a week. That seemed work for one week or so, then diahrea, urgency and stomach discomfort started again. Call to GI again. Try Rowasa enema,entocort again. Rowasa caused instant cramping. Get flex sig. Shows only minor inflammation.

Currently on Apriso 4 pills a day, 3 Entocort and 1 Align probiotic.

I am getting a really full feeling after eating or drinking. Crampy feeling on and off throughout the day. Feeling extremely tired, worn out and my cramping feels like bad PMS cramping. (I have had a hysterectomy so no relation).

My question is this, is there any other medication I can try to feel better. My GI says basically to tough it out.
Posted 10/3/2012 2:09 AM (GMT 0)
I am sorry that you're flaring. Did your GI mention doing a full scope? Cramping can indicate activity beyond the rectum. If that's the case, you may need a high dose of mesalamine. Apriso is actually very low dose. You can also use the rectals 2x a day, morning and evening. It sounds like your GI is doing all the right things, the problem with this illness is that it's very unpredictible. It can just stop responding to methods that works for you in the past. I used to do great on Canasa alone and over time, it became less effective, eventually I needed Asacol, then prednisone, then 6mp. I am not saying this is the case for you but keep using your meds, maybe you can try a steriod enema? I hope you begin to see progress.
Posted 10/3/2012 2:19 AM (GMT 0)
Hi, I was diagnosed in 2005, and hospitalized two years ago for a week. Since being hospitalized, I have not done very well. I was on 12 500 mg of Asacol a day, prednisone, canasa, and enemas. March of this year my boss referred me to Dr. Schulze. I started to use intestinal formula #2 and have not had any issues since. I no longer take prednisone, and I am down to six 500 mg a day, sometimes I forget and only take three. For once in years, I feel great. I used to be in bed the majority of the time and was ready to give up and deal with feeling horrible for the rest of my life. I never thought I would feel good again.
Posted 10/3/2012 2:48 AM (GMT 0)
I'm sorry you are having trouble with your proctitis.

You mentioned you tried Rowasa and were cramping? Did you quit it immediately or did you give it another shot? The reason I'm asking is because Rowasa has worked great for me. It's a bit strange when you try to hold it in the first few times; but then you get used to it and--at least for me--the results have been great.

PS. It's great that your disease has not progressed beyond the rectum.
Posted 10/3/2012 4:44 AM (GMT 0)
Hi, I was diagnosed in 2005, and hospitalized two years ago for a week. Since being hospitalized, I have not done very well. I was on 12 500 mg of Asacol a day, prednisone, canasa, and enemas. March of this year my boss referred me to Dr. Schulze. I started to use intestinal formula #2 and have not had any issues since. I no longer take prednisone, and I am down to six 500 mg a day, sometimes I forget and only take three. For once in years, I feel great. I used to be in bed the majority of the time and was ready to give up and deal with feeling horrible for the rest of my life. I never thought I would feel good again.   wow, that's some big, bold font you got there !   Post Edited (soystud) : 10/2/2012 10:47:05 PM (GMT-6)
Posted 10/3/2012 5:48 AM (GMT 0)
That's a proper bold statement!
Posted 10/3/2012 2:02 PM (GMT 0)
I know, I didn't know how to get the font to a normal size when I reduced it in error.
Posted 10/3/2012 2:42 PM (GMT 0)
Applebob, do you think it is possible that you are sensitive to the ingredients in the Rowasa? Are you using the name-brand enema or a generic? I found one generic gave me bad diarrhea and another did not.

There is a good trick to using any of these retention enemas - to keep yourself from injecting a bunch of air with the meds (the air makes me cramp up) you gently squeeze the bottle before inserting it so all the air comes out. THEN you insert the tip and give yourself the enema.

You wrote about having 14 days of constipation. That's a big deal! What caused it, do you think? Are you using any fiber supplement? That is often really helpful for people with ulcerative colitis/proctitis, and maybe would resolve some of your motility issues (constipation followed by days of multiple bms and/or diarrhea, repeat repeat repeat). I think this might be more of an issue for you than any inflammatory problem. Strangely, the mesalamine enemas make my motility issues worse.

Entocort is an odd medicine to take if you have proctitis, since it is meant to treat inflammation at the terminal ileum, not exactly in the neighborhood of your rectum and sigmoid colon. It costs so much money, I'm wondering if you really need it.
Posted 10/3/2012 3:41 PM (GMT 0)
big is good - just wish my turds would big up - funny how you can't let go of the old days - nothing wrong with skinny poops i guess - they match my waistline !
Posted 10/4/2012 12:51 AM (GMT 0)

kazbern said...
Applebob, do you think it is possible that you are sensitive to the ingredients in the Rowasa? Are you using the name-brand enema or a generic? I found one generic gave me bad diarrhea and another did not.

There is a good trick to using any of these retention enemas - to keep yourself from injecting a bunch of air with the meds (the air makes me cramp up) you gently squeeze the bottle before inserting it so all the air comes out. THEN you insert the tip and give yourself the enema.

You wrote about having 14 days of constipation. That's a big deal! What caused it, do you think? Are you using any fiber supplement? That is often really helpful for people with ulcerative colitis/proctitis, and maybe would resolve some of your motility issues (constipation followed by days of multiple bms and/or diarrhea, repeat repeat repeat). I think this might be more of an issue for you than any inflammatory problem. Strangely, the mesalamine enemas make my motility issues worse.

Entocort is an odd medicine to take if you have proctitis, since it is meant to treat inflammation at the terminal ileum, not exactly in the neighborhood of your rectum and sigmoid colon. It costs so much money, I'm wondering if you really need it.




I was previously on Entocort and it worked pretty good at helping settle down everything. I am actually wondering if it's the Entocort causing the abdominal cramps. GI says no, but the med info. sheet says it can cause cramping. I used the generic Rowasa, I was "administering" it correctly. The RN made sure to give me good directions when she called me with the new prescription.
Posted 10/4/2012 1:41 AM (GMT 0)
Try switching generic brands and maybe that will help relieve the diarrhea.

If entocort is helping you, I think a full scope is something you should seriously consider. Entocort treats the terminal ileum, not the sigmoid colon.
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