Not sure if any of my treatment has worked?

[Ben963]

Hi my name is Ben and I live in Cornwall, England.

I was diagnosed with crohns disease about 18 months ago when I first experienced constant blood and diarrhea. This then developed into a heavy flow of mucus, blood and even prolapse when going to the toilet (sorry about the gory detail). After being put on Prednisolone and Asacol there was no change. I have now been on Azathioprine and Humira injections for the past 8 months and I am unsure whether this treatment has helped.

The diarrhea only stopped when I made serious changes to my diet. Mainly I have removed fruit, veg, wheat, gluten, diary and sweets from my diet and introduced a liquid meal (ensure plus) and this has helped a lot, but the other symptoms remain just as bad as they have ever been. The diet can't be a permanent solution as relying on liquid meal substitutes can't be good.

I can deal with having to change my diet and inject myself regularly but the one thing I am finding difficult is the constant flow of mucus (many accidents every day). If anyone has any thoughts or experiences they can share that they think might help me I would really appreciate it.

 

[rollinstone]

Sounds like meds aren't working if your havin accidents bro, try get onto the Rhb104 trial (anti-map) treatment. If you're not responding to anything it may be an infection, it's important not to give up, and if you're still feeling hopeless you should try find another opinion (in my opinion). Hope things improve for ya real soon

 

[mccindy]

If you've changed your diet and taken your meds and haven't had any improvement, I would say it's time to head back to the doc. There's got to be something going on that the medications aren't working, if they were you shouldn't still be having such a heavy flow of mucus.

 

[wee_mee]

Hey Ben

How are things now? Have you got in touch with your consultant? It sounds to me that your life is more of an existing rather than living. You deserve more than that if there are other options. I too am in Cornwall, and met the IBD nurse at Traliske a while back and she was really really helpful. You might want to get in touch, although I think she may be off work just now.

 

[wildbill_52280]

dietary changes have also helped me alot, particulary lowering lactose and sucrose intake as much as possible and avoiding fruits and milk was a part of that it was the SCD diet book breaking the vicious cycle that lead me to experiment with this to lowering pathogens in my gut and reduce symptoms. i have done this for 4.5 years now with taking very little medications at all as i was initially very fearful and skeptical of all of them due to my suspicion that a course of antibiotics caused my disease. new studies coming out seem to suggest that is very likley what cause my crohn's although other cases may have developed in other ways. this is why i believe fecal transplants will cure IBD, and small studies suggest that it already has cured people, find out more on this thread i started about fecal transplants- http://www.crohnsforum.com/showthread.php?t=52400

i encourage you to utilize all available medications as well as explore other options like diet and supplements.

also very important is vitamin d 1000iu
b12 both forms methylcobalamin and adenosylcobalamin. every two weeks or so to keep levels up as it is absorbed in the ileum.
vitamin e all forms avoid synthetic.
extra vitamin c 1000mg daily, use pure with nothing else added except maybe gelatin capsule. i believe this is actually helping keep fissures away by making the skin heal better.
carotenoid supplements.

some alternatives you could try are:
-fiber supplements like inulin or psyllium, or high fiber foods, oats are a good choice.
-sodium butyrate supplements.
-a probiotic with clostridium butyricum-http://www.bayho.com/p/3708999.html?gclid=CKmPh5O9hLsCFfBDMgodjXkA8g
-a small amount of coconut oil to inhibit intestinal pathogens anywhere from 1-7 grams total daily divided up with each meal. careful if you have blood clots or heart disease.
- turmeric
- resveratrol as japanese knotweed.