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Avatar universal

UC for 40 years - need help with severe flare-up now

Not sure where to post this, but here goes.  I was diagnosed with ulcerative colitis/proctitis at age 13, but I'm certain now it's been UC all along.  For 12 yrs they tried all kinds of things - cortizone enemas & prednisone, etc - but nothing helped.  Finally referred to a gastroenterologist in 1980 who said there were some "new studies" that indicated that colitis might be caused by an imbalance in the bacterial environment of the intestine.  From the little I've read here so far, that seems to have held true.  It also held true for me.  My Dr suggested that I add Metamucil to my diet 3 times a day and for the 1st time in 12 yrs the bleeding stopped.  I discovered flare ups came after eating pork - I've since decided it's the preservatives in pork (and lunchmeats) that I react to.  By avoiding those foods, and using Metamucil for the odd flare-up, I've managed to keep my illness in check for 30 yrs.  Until now . . .

About a month ago I flared up.  This is the 1st time Metamucil hasn't worked.  AMs are worst but I'm sometimes up in the night, too.  The frequency is much more than ever before, and I've actually had a couple of major accidents when I couldn't get to the washroom in time.  The Metamucil has helped some - for the most part once the AM has passed, I manage most of the rest of the day without having to run to the washroom at a moment's notice.  But I'm alarmed that Metamucil is not helping the way it always has before.  I should mention that I am currently living where I have no health benefits.  It's not that I couldn't see a Dr, but we'd have to pay cash and we really don't have the $$.  And Drs here are very keen on surgery for this type of illness - I know of a half dozen people who've had the surgery - my daughter's 15 yr old bf among them, and his Dr refused to even consider alternatives.  So I'm reluctant to subject myself to Drs.

I was encouraged to read that the use of probiotics and such still seems to be used. I guess I'm looking for some suggestions for additional options to help me get this under control again.  Thanks to all.
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Avatar universal
I too find it extremely strange that Dr'.s are pushing surgery. I have had UC for 7 years and at first my Dr. had me on so many meds that I was just able to function, but still experiencing a lot of fatigue and occasional pain. I researched alternative healing methods and started seeing a Chiropractor regularly, which helped a lot since each of the vertebrae are connected and directly related to internal organs. After a couple of months of getting regular back adjustments, I started to feel so much better that I weaned myself off the Asacol, Prednisone and other pain relievers. I also began taking probiotics and stuck to a special diet for about two years to become completely flare-free. The probiotics I take are called ThreeLac and I get them from Global Health Trax. The diet I followed is called the SCDiet. (specific carbohydrate) and their website with recipes is www.scdiet.org.  I was symptom-free also until a couple of months ago. Over the years I have become more erratic with my diet and now paying the price. Now back on Prednisone and Asacol, which I see as sometimes necessary to get back on track again. Whatever you do, don't postpone seeing your Dr. because of $$. I did that this year, dealt with the pain for nearly three months before deciding I couldn't take it anymore and ended up admitted in the hospital for 6 days when it could have been avoided if I had gone earlier. Take care of your body first. AND, keep looking for a Dr. that you feel comfortable with and isn't going to push you into having surgery at a first response.
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1974283 tn?1425609124
It looks like you are receiving a lot of good advice and I hope some things help your condition!

I can recommend a few more natural ideas as well. Aloe juice, curcumin, boswellia, and wobenzym. These are all natural anti inflammatories that helps me a lot. I would do some research into them and keep them handy. They kept me from having surgery for 5 years. I took these and would make it through every scope even though they were sure I would rupture every time, I stopped these pills while I was on a trial medications an three months after stopping them I went in for a scope and my colon ruptured.
Curcumin helped my body pains and joint pains too!

Good luck!
Helpful - 0
Avatar universal
I think every UC patient should try Cap Brahmastra which is having good quality colostrum.You may get tab or powder from wonder nutraceutical company. You should take Curcuwonder (curcumine 95%)Which helps maintain disease remission. & product like Moringa Wonder can help replacenutrient loss along with other benefits.

Dr  Mrs Ashakiran.
Nutritional Therapist.
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Avatar universal
Wow.  Yet another condition helped by magnesium.  Magnesium is incredible with all the issues it helps.
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Avatar universal
It's been a while since I've posted here so here is my story:
Back in the 1980s when I met my wife we both enjoyed eating at a Chinese restaurant, and after a few years we changed to another Chinese restaurant with better food that I eventually became IRRITABLE TO!    After eating at this restaurant, we would have to be back to the house within 30 minutes so that I could go to the bathroom with EXPLOSIVE DIAHREA more than 4 times until all the Chinese food was out of me before any nutrients got absorbed into my colon.............We continued eating there for another 15+ years with me having this constant routine just about every Saturday after-noon.    The Proctitis came on me gradually until I became aware of the Constant pain and the fact that I was going diahrea 4 or more times a day on a good day until I started noticing crap on my underware.   The only thing similar to this disease is the addiction to cigarettes:  first you abuse them on a monthly basis, then weekly, then daily, then hourly, etc..Until YOU realize you are DEPENDENT on them.

My treatment: Magnesium and Niacin..............
If your story is similar to mine:  
Magnesium::   google and read about it, buy it and Take more than 3 to 4(or more) 250mg pills of it daily IF YOU ARE GOING DIAHRE.       You need to google Nutrition facts on foods high in magnesium like Decaf coffee, cabbage, peanut butter, Garlic, and DRINK AND EAT THEM DAILY.
Niacin "flush type" ::: is MORE ANTI-INFLAMMATORY than most anything you can drink or eat......If you do take this Niacin without a doctor supervision, then be careful and get informed about it like the 3 different types of "FLUSH" Niacin..Immediate release is the least harmless to the liver, next Extended-release also known as Niaspan-prescription, and most harmful to the Liver is Time release. slo release, etc.-IF YOU CAN BUY IT WITHOUT A PRESCRIPTION AND BOTTLE HAS TIME OR SLOW OR ANYTHING ELSE ON IT ABOUT HOW THE NIACIN IS RELEASED, then you have the hardest one on your Liver like I AM TAKING RIGHT NOW.    Note, as long as you drink 6 or more cups of Deacaf coffee daily then you have very little to wory about hurting your Liver.   YOUR ONLY PROBLEM IS DEVELOPING DIABETES BECAUSE THE NIACIN RAISES YOUR BLOOD SUGAR, and this I know because I purchased a glucose monitor and monitored my blood sugar before and after taking an IMMEDIATE RELEASE 250 mg niacin tablet.   My blood sugar went from 109 to above 150 within 20 minutes of taking the tablet, and my symptoms of the SURGE IN ENERGY WAS the Skin Flush, Itchyness, burning skin, etc.......

To get you started on the Magnesium research, here is the NIH Site.....http://ods.od.nih.gov/factsheets/magnesium.asp
"The health status of the digestive system and the kidneys significantly influence magnesium status. Magnesium is absorbed in the intestines and then transported through the blood to cells and tissues. Approximately one-third to one-half of dietary magnesium is absorbed into the body [9-10]. Gastrointestinal disorders that impair absorption such as Crohn's disease can limit the body's ability to absorb magnesium. These disorders can deplete the body's stores of magnesium and in extreme cases may result in magnesium deficiency. Chronic or excessive vomiting and diarrhea may also result in magnesium depletion [1,10]."
.......................................................................
"Who may need extra magnesium?
Magnesium supplementation may be indicated when a specific health problem or condition causes an excessive loss of magnesium or limits magnesium absorption [2,7,9-11].

    * Some medicines may result in magnesium deficiency, including certain diuretics, antibiotics, and medications used to treat cancer (anti-neoplastic medication) [12,14,19]. Examples of these medications are:
          o Diuretics: Lasix, Bumex, Edecrin, and hydrochlorothiazide
          o Antibiotics: Gentamicin, and Amphotericin
          o Anti-neoplastic medication: Cisplatin
    * Individuals with poorly-controlled diabetes may benefit from magnesium supplements because of increased magnesium loss in urine associated with hyperglycemia [21].
    * Magnesium supplementation may be indicated for persons with alcoholism. Low blood levels of magnesium occur in 30% to 60% of alcoholics, and in nearly 90% of patients experiencing alcohol withdrawal [17-18]. Anyone who substitutes alcohol for food will usually have significantly lower magnesium intakes.
    * Individuals with chronic malabsorptive problems such as Crohn's disease, gluten sensitive enteropathy, regional enteritis, and intestinal surgery may lose magnesium through diarrhea and fat malabsorption [22]. Individuals with these conditions may need supplemental magnesium.
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I am pain free and having ONE bowel movement daily and ENJOYING LIFE AGAIN because of the Internet and the ability of me to realize that the CONSTANT DIAHREA over the years DEPLETED my total body Magnesium content which led to my Nerves in my colon possibly not working properly and causing my immune system to  attack my colon which resulted in the PROCTITIS so IF YOU HAVE SUFFERED OF DIAHREA FOR YEARS DUE TO COLITIS, ULCERATIVE COLITIS, CHRONS, PROCTITIS, ETC.. ANY FORM OF COLITIS THEN BUY THE Magnesium pills from Walmart and make sure they don't have any zinc in them....Just Magnesium!
Helpful - 0
180749 tn?1443595232
Take pommegranate juice to calm down the colon.
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Avatar universal
Thanks, everybody, for the comments and advice - Awakenow, you hit on something I hadn't really thought about.  I've been in chiropractic treatment now for a couple of years for another issue - didn't even think to tell my Chiro about this.  (She'll probably shoot me!)  Anyway, that's my first step.  I'll also look into the ThreeLac and the SCDiet - thanks for that info.  

I was on prednisone early on - never did a thing for me.  Cortizone was the same.  The only thing that ever helped in 12 years of Drs treating me back when I first got this was starting to take the Metamucil.  I realized this morning that I might be unwittingly eating something else now that has the same kind of preservatives in it that make me sick - I've just never been able to identify it.  But hubby's been bringing home packaged cheese/macaroni salad from the store recently that the kids like and I've gradually started eating more of it than I did at first.  That sort of coincides with this flare up - and I know I have to watch stuff like that.  I think it could also be a reaction to taking Aleve for back pain - I hadn't taken that in years and years - so it could have been the culprit, although I quit taking it and it hasn't seemed to make much difference.  

Anyway - will keep you guys posted.  Thanks so much for the help.
Helpful - 0
1390922 tn?1280362447
I forgot...maybe you can check out a county hospital/clinic fo medical help. That's what I had to do! Put down the pride and just had to go considering all my ailments. If you don't know how to find out...dial 211 and ask the operator. Hope this helps!
Helpful - 0
1390922 tn?1280362447
I agree about the surgery scenario. I recently read info about Doctors and how they are trained. They are taught to prescribe meds and surgery...very little in between. They follow a set pattern of stategy but mainly stick to this agenda.
Out of 12 years or more of their training, they receive 5 HOURS of natural cures, etc!! AMAZING huh? But very true.
Pharma companies train their Reps to reel in the Drs...and give them kickbacks for using their meds. This is even true for TESTS performed. Most people don't know it but they even get kickbacks for opting tests on patients.  WITH THAT BEING SAID...
I did't learn this until after 4 surgeries in less than 2 yrs. But, I must add that these were needed surgeries. My second neck fusion, surgeries on both wrists, both (trigger)thumbs, both first 2 fingers, and one elbow...the other elbow is coming soon. (The old tale of WORKING hard is good for you is NOT true.)
Now, my IBD/IBD is increasing to what they think might be Crohns. I've done the CT Scan with Barium & Dye Contrast. (Felt like I was dying for a week after) Now tomorrow the gastro will schedule a colon testing...don't know what yet.
I was the same as you...I've dealt with the IBD/IBS for 20 yrs and now it's fullblown. Arthritis, Rashes, Bumps, Headaches, Eye Infections, Incontinence, Back pain, Lung, Kidney and Liver issues too. The swtiching of diarrhea to constiptation is daily. Fatigue is chronic! I was told the hormones go crazy too when all this happens.
This is genetic, and my granddaughter has had stomach/bowel issues from 6mos old(now 9yrs old). She now takes PROBIOTICS and is in remission...so to speak.
I've found that liquid B12 is very helpful. I'm on no meds until tomorrow...then we see. My PCP prescribed 3 meds yesterday..two for the eye issues and one for (hypertension) high blood pressure due to pain levels. But tomorrow I'm sure the prednizone or something to that effect will prescribed.
I've learn that protein form animals trigger it, and now I eat 4-5 small meals as to not trigger it as much. Milk and dairy products trigger it as well considering milk come from animals. No spicy foods, no rich foods.
BUT I am still learning too...so I will keep you in my thoughts...Peace & Blessings
Helpful - 0
483733 tn?1326798446
I am appalled that the doctors are pushing surgery.  That should not be the first choice.  I didn't have a choice with mine as my bowel perforated.  It is imperative that you get treated at the first sign of a flare up so it can be stopped.  You really need to see a doctor and get on some maintenance drugs and a round of low dose prednisone to kill this before it gets too bad.  

Studies have also been done proving that many found relief with a gluten free diet.  You might want to try that too but do see the doctor.
Helpful - 0
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