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Avatar universal

Symptoms never end

I was diagnosed with colitis 10+ years ago, and my 2nd flare-up started 13 months ago, but it won't end!  I'm still with gas, bloating, blood & lots of mucous (sometimes nothing but mucous & blood), frequent loose stools, sometimes explosive and hard to hold, abdominal pain, fatigue and lots of joint pain.  
I tried sulfasalazine & got pancreatitis (but I don't drink), prednisone (and dealt with the numerous nasty side effects), Colozol did nothing, neither did Asacol, 6-mercaptopurine is another immunosuppressant, but it isn't working and Cortenemas and Rowasa only work for a few weeks.
This is making me crazy!  Does anyone have a suggestion that is not surgically oriented?  I'm not ready for that yet!  I'm 41 and used to be physically fit and very healthy until this hit me and laid me flat.  Any ideas, suggestions?  Thank you!
4 Responses
Avatar universal
This has got to be so frustrating for you! But here are some ideas that may give you a different direction to go in, toward regaining your health:

1)Look for better docs,

2)Investigate possible food sensitivities, like Celiac Disease (gluten intolerance), Milk allergy, Lactose (milk-sugar) intolerance, etc.

3)Use probiotics, (to repopulate the beneficial bacteria needed in the large intestine, but destroyed by various medications), such as Bifidus infantum (related to Acidophilus).

I'm going to post some (holistic, drug-free) GASTRIC REFLUX TIPS, which include many ideas & a book reference that you may find helpful:

Some GASTRIC REFLUX TIPS (without acid blockers): These include ideas about more than just reflux:

Please check with your doctor, first, before trying these tips to be sure they are safe, in your particular situation.

GER=Gastro-Esophageal Reflux. (Gastro=stomach. Esophagus=food tube.)

LPR= Laryngeal-Pharyngeal Reflux. (Larynx=voice box, containing the 2 vocal cords. Pharynx=throat, above the larynx. The larynx is above the trachea/windpipe.)

Reflux=acidic or alkaline stomach material that backs up into the esophagus (food tube), causing any of these problems (at least): VCD/Vocal Cord Dysfunction/Laryngospasm attacks, cough, voice problems, asthma, globus (feeling of lump in throat), constant need to clear throat, much extra throat mucus, worsening of sinus condition, sore throat, laryngitis, voice problems, pre-cancerous conditions of throat &/or esophagus, etc.

SOME GER/LPR CONTROL THINGS WE DO, that we learned from the excellent book: STOMACH AILMENTS AND DIGESTIVE DISTURBANCES, by Michael T. Murray, N.D. See page 9, References, in my website: http://cantbreathesuspectvcd.com   and, also see GER/LPR info on page 5, and on LINKS page.

PLEASE READ THIS GREAT BOOK. It may possibly be bought on-line, from Michael T. Murray
Avatar universal
you say: "acid blockers do nothing to stop alkaline reflux". From what I know - that is not trew . my doc told me that: 1. it is very rear that reflux comes from alkaline 2. even if so
Avatar universal
Oh my God! My husband had this and alot of bowel removed in his 20's and if only we knew now what we know then.

We went to a nutritional whole foods consultant last year and he is off his medicine and I have lost 20#! I can't remember her name but go to natural epicurian / Casa de Luz on the web. They are out of Austin and ask the name and number of the woman who does chrohn's disease counseling, she is out of Nashville and worked with someone from Chrystal Gayles family and has cooked for them. Even if you can follow this diet for 3-6 months you will find it very helpful. There is a great recipe for Vega Tea that is soothing and healing.  

The info on the GER seems like it would apply to you.

Also if you have some diagnostic test indicating you have pockets of puss or some other type of infection or tissue break down. Get the surgery. My husband intially refused, waited a year, and he had much more bowel removed than if he had just intially done the draining/cleaning out and having the parts of colon sewen back together. Now he is doing so much better. Mostly because of diet.
Avatar universal
An excellent web site is Crohn's Colitis Foundation of America ~ please check it out. Wonder why the colitis meds aren't working for you this time around, perhaps you have a bacterial (C. Difficile) infection??? Probiotics (yogurt with live culture) may be worth a try. Good luck.
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