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Bleeding, cramping, urgency since Nov 2011

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Ulcerative Colitis
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Posted 6/30/2012 3:21 PM (GMT 0)
I have been doing all 3 of these things since  Nov. 2011 and my gastro doctor just can't seem to find the medication(s) to fix it! I've been on Prednisone 40mg to 5 mg  (weened off), Asacol 3 tabs (800mg) a day, Prenatal Vitamin for the iron 'cause of the blood loss,  Bentyl as needed for the urgency, I've tried Rowasa enemas, and now Anutcort 25mg  suppositories. It's very annoying, frustrating, and depressing. Does anyone else have any suggestions or recommendations from their doctors and in remission? I forgot what it's like to have a life without using the bathroom 6-15 times a day with blood and NOT have a stomach ache. And I DO watch what I eat. I gave up caffeine all together, so the diets aren't helping either! I'd appreciate any feedback. I can't continue to lose job after job, not have a social life, this is gettin' me way too down! Thanks!!!
Posted 6/30/2012 3:33 PM (GMT 0)
Also started Probiotics and Activia yogurt!
Posted 6/30/2012 4:09 PM (GMT 0)
1. Why did your dr wean you off Prednisone if you aren't doing better?

2. Have you tried immunosuppressants or biologics? Imuran has worked very well for me.

3. Isn't that Asacol dose kind of low for someone who is flaring? I took Asacol 1600mg 3x daily.

4. What is the extent of the inflammation? Proctitis? Left-sided? Pancolitis? If you have a lot of inflammation, perhaps you need a steroid enema rather than a suppository.

5. Have you considered taking an anti-depressant? Wellbutrin actually helps my UC symptoms and my depression.


If your dr is out of ideas, I'd get a new dr. It sounds like they aren't knowledgeable enough about UC treatments.
Posted 6/30/2012 4:55 PM (GMT 0)
He weened me off the Prednisone due to the pain of my joints and the swelling was so bad, I couldn't hardly walk or function. A simple hug would even hurt! I was on Imuran in the past, but I was told it was on it's way off the market due to the increase chance of cancer now? That scared me because I have a family member who has stomach/colon cancer, and I've lost a cousin and uncle to cancer in the last year. That maybe a low dose of Asacol. In the past I always took 3x daily 400 mg. Asacol is so expensive like $300 and I have no health/prescription insurance. I have to depend on my gastro doctor for samples and that's only 10 tabs at a time and I'm lucky to get 6 of those bottles. He's a $100 a visit with no health insurance too, so I sometimes feel stuck! The inflammation is pretty severe, mine is on the lower right side. Not sure what that is? But that's where my cramping and burning sensation comes from. He's never went into detail, he just says I have UC and that's it. Last time I had a colonoscopy he also decided to do a endoscopy and added GERD and Gastritis to my UC. I had a different gastro doctor when I first got diagnosed and he got it under control within 3 months, and I was in remission for over 6 years with NO flares at all. Since then he retired, got this new doc and he doesn't listen to half of what I say, and where I live I don't have many choices. I have been on the steroid enema and it made it worse. I'm on Clonazepam but that goes with my Nortriptylin for my ongoing headaches/migraines/bulging disc. Thank you for replying. I'll take any new recommendations/suggestions!!
Posted 6/30/2012 5:17 PM (GMT 0)
Continued UC inflammation increases your risk of cancer more than taking Imuran/6mp at UC doses. If you have a family history of colon cancer, you should do whatever it takes to get the disease under control ASAP. I have not heard anything about it being "on its way off the market"- it is an old drug that has been widely prescribed. I'm pretty sure any attempts to pull it would result in extreme resistance by the organ transplant and autoimmune disease communities.

Have you tried purchasing meds from Canada? Or tried sulfasalazine instead of Asacol (it's a bit cheaper)? Or looking into patient assistance programs for people without insurance? Or government-subsidized insurance? You'll need to do some research to find a way to pay for your meds- in the end, meds are cheaper than hospitalization.

I'm not sure on this but I don't think inflammation on the right side is usually helped by enemas or suppositories- it seems like it would be pretty difficult for the medication to make it that far. You might be wasting your money on rectal meds. Quincy- correct me if I'm wrong!

Your dr won't even give you samples without an appointment?! When I worked at a clinic, we would MAIL samples or hold them behind the front desk for patients to pick up. You said your options are limited- if you have any options at all, I would find a new dr pronto. If he doesn't listen to you, can't help you, and won't assist you in getting the meds that you need, he's not worth your time or money.
Posted 7/1/2012 1:01 AM (GMT 0)
3/800mg of Asacol is a maintenance dose. It sounds like you're in a flare up. You should see if your GI will give you the OK to increase to 4800mg and add rectal medication. I have had trouble affording medication in the past and there are ways to beat the system. The first, you can request a generic (sulfasalazine or Balsalazide) both of which may not be as effective for you but may be worth a try. The second, a PAP program. Asacol 800 has one, as does Lialda. I am currently insured but I switched to Lialda because Asacol's copay was too high and Lialda's co-pay assit brings my cost down to $10 a month which is great for me. Canasa (a rectal med) has a great PAP program too. You can get boxes which include 30 suppositories for $40 a mont *I think* - which is way less than paying full price. They are about 700$ without anything. The other option is ordering from Canada. There is a generic mesalamine available just about everywhere else in the world. I used to order from Canada and got the same medication for much cheaper. If these meds don't help you and prednisone is not something you're interested in, I think it's time to ask your GI what your options are. You may need something stronger. Either you go the traditional medical route and go to immunosupressants or you go to an alternative MD and see about getting some antibiotics or LDN, perhaps fecal transplant. There are options, many are things your GI won't be open to but you have to follow your gut because GIs generally follow the same course for everyone. 5ASA > Pred > immunosupression > biologic > surgery. It's difficult to find alternative and mainstream options that won't drain your pocket so I do understand your frustration. When I was uninsured and not working fulltime, I couldn't even consider seeing more doctors - it's just too expensive and that's without even considering the cost of medication.

We are here for you if you need to vent or if you have questions about anything I've mentioned :) I can direct you to PAP programs if that's helpful??
Posted 7/1/2012 1:02 AM (GMT 0)
Another thing, I think the ingredients in activa are probably more of a hinderance. Diet doesn't help me but I know processed foods aren't good for hte body and activa contains artificial ingredients and HFCS. I wouldn't bother with using that for probiotics. If you want to use yogurt for probiotic value, make your own or buy high quality yogurt without artificial flavors/sweetners.
Posted 7/1/2012 4:30 AM (GMT 0)
Sounds like you need to heal my friend! The GAPS diet has worked very well for me and I help others through it. If you want to read more, check out my story: http://simplisticwholistic.com/blog/2012/06/my-gaps-gut-healing-journey

Best of luck!
Posted 7/1/2012 4:23 PM (GMT 0)
Ask the doc about increasing the mesalamine (asacol) dosage. I tried it many times in the past at a lower dose and it did nothing until a recent doc put me on 4g and within a week I was doing better and it brought me to a remission for months until I went and took antibiotics for acne. Grumble. Anyway, the higher dose made all the difference. You can probably reduce it again once you've been in remission a while, but first things first. Hope you feel better soon.
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