Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
This is my very first post ever. I have been struggling with microscopic colitis going on four years. I have always been a very active and social person and this disease is debilitating.
I have been traveling four hours to see a specialist at the Cleveland Clinic. She had me do a course of Entocort, a steroid and then put me on Apisro, an anti-inflammatory. As long as I am taking the steroid, I am fine but as soon as I get off it the flare ups start right back up. She keeps telling me that I cannot continue to take the steroid as it is so damaging to my body. But has not offered any other alternative.
I did this whole natural thing, oregano oil, probiotics and Udo"s oil and was so proud of myself going six weeks without a flareup but I went up to stay with my elderly mother for a bit and she stressed me out so bad I had another flareup and have been stuck in the house for a week now so back on the steroid.
I am seeing a new doctor but not until July 30th. I am wanting to know if anyone out there is taking a medication that actually works.
I have been traveling four hours to see a specialist at the Cleveland Clinic. She had me do a course of Entocort, a steroid and then put me on Apisro, an anti-inflammatory. As long as I am taking the steroid, I am fine but as soon as I get off it the flare ups start right back up. She keeps telling me that I cannot continue to take the steroid as it is so damaging to my body. But has not offered any other alternative.
I did this whole natural thing, oregano oil, probiotics and Udo"s oil and was so proud of myself going six weeks without a flareup but I went up to stay with my elderly mother for a bit and she stressed me out so bad I had another flareup and have been stuck in the house for a week now so back on the steroid.
I am seeing a new doctor but not until July 30th. I am wanting to know if anyone out there is taking a medication that actually works.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
In the quick reading I've done on microscopic colitis, it mentions if it's sever it may not respond to medication so I'd definitely check with your new doc on what the plan is going forward. It does mention that dietary changes can help, like eliminating lactose. It also mentions use of mesalamine (which is what Apriso is) and also use of sulfasalazine for treatment. Perhaps your doc could try suflasalazine instead to see if you respond although if you have problems with sulfa drugs, you may not be able to take it.
If you're having a lot of diarrhea right now, you may want to try a low residue diet (low fiber) just to give your colon a rest. It's just a temporary diet until things are better controlled.
Sorry you're having issues but I think it's good you're seeing a new doctor.
Feel better soon!
If your Dr. is not suggesting any next steps I would suggest a new Dr. Which it sounds like you are already doing and will be seeing in July. Don't be afraid to ask for second opinions either. I did that before I started my Remicade.
For me it was Remicade or surgery. If the Remicade and other meds did not work well enough for me then surgery. Surgery to remove my colon...I was not ready for that unless nothing else would work!
I don't know much about the Microscopic Colitis. My best recommendation is to find a good GI Doctor and to work with them.
In the mean time, while you wait to see your new Dr, be easy on your self. Eat low residue foods, get lots of rest, drink electrolyte drinks, give your system as much of a rest as you can while still providing your body with nutrients.
Good luck,
Rachel
I have Not found any medication that helps, but here are a few things that might;
Meditation can really reduce stress. Anything that stresses us can be devastating. It's been shown to upset our natural balance of gut bacteria.
Dr Wayne Dryer's "Ah" meditation;
https://www.youtube.com/watch?v=gwBFI4sGsLg
I love this one!
I've got a similar situation with my family. Unfortunately, I don't have any living Grand Parents. I love my family dearly, but man, can they be A Big Pain In The You Know What's It!
Do you use any kind of turmeric, or curcumin? It's an anti inflammatory. I take it every day. I make my own capsules with organic turmeric powder & take it with an omega 3 oil. The oil & turmeric are supposed to work synergistically.
Hang in there! &
Best of luck to you with all of this & in seeing the specialist.
I'll be seeing a specialist on Monday. I have Crohn's Disease & a fistula.
Oh, The Fun We Have! ;)