Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

12 Year Veteran of Ulcerative Colitis

Intro:

When I was around 14 I had the flu and it never seemed to go away. My general symptoms subsided, but I had diarrhea from this moment to the

sir poops a lot colitis

Sir Poops-A-Lot with his Wife

present (as least this is as I remember it). I never said anything to my parents until I was 17 when my symptoms were becoming increasingly unbearable. I was having constant bloody diarrhea and I lacked control of my bowel movements. I often had accidents.

My Colitis Story:

I began seeing a GI doctor and several tests were performed. My doctor determined from my colonoscopy that I had Ulcerative Colitis. He immediately started me on Asacol and I took 12 pills a day for a total of 1 year. After six months of taking Asacol my doctor added Entocort (can’t remember the dosage) to the mix, and 3 months later substituted for Prednisone (40-60 mg/day). As soon as I began taking Prednisone I developed sores on my rear end and my mouth and throat were thoroughly plastered with the painful things. I personally believe that these sores, or ulcers, continued from mouth to anus (I told another GI doctor this once, however, and he looked at me like I was crazy). Needless to say the ulcers made it difficult to eat. I “ate” chicken broth for a week because it was too painful to eat anything else. The ulcers continued for about 4 months. I was bed ridden throughout this time and then off and on for about 6 more months, and my weight dropped from 180 pounds to 130 pounds (I’m 6’0″ and not even sure how I could weigh 130 pounds and be alive). I looked like a walking skeleton and moved like a turtle. It was a slow recovery, but I returned to somewhat “normal” activity after about a year from the first appearance of ulcers in my mouth.
It has been 9 years since that painful experience and I have had zero luck with finding some relief from UC. When I developed the ulcers in my mouth I, of my own accord, tapered off of the medications I was taking. After I had somewhat recovered enough to visit a doctor, I began a search for a new doctor because my GI doctor said he could do nothing more for me. I sought help from about 15 other doctors, but since they mostly had the same treatment I lost faith in them and decided to search for an alternative. I then spent about 4 years seeking a remedy through natural methods. You name it, I’ve done it. Acupuncture, diets, vitamins, cleanses, chiropractor after chiropractor. After all this time and money spent, I was still having frequent, bloody diarrhea. I was 22 and without insurance so I decided to give up for a while and move on with my life as best as I could.
With the passage of the new health bill, I was able to get on my parents insurance for a few months before I turned 26 in May. I decided to fulfill Einstein’s prophecy of insanity and, “[do] the same thing twice, expecting different results.” I had a colonoscopy performed in March and was diagnosed with severe UC, and had one non-cancerous polyp removed. My doctor prescribed Asacol HD, and since it was supposedly a little bit different, I decided to give it a go. I was bed ridden after 3 weeks. Of course, I gave it up and reaffirmed that I did not want to stupidly go down that path again.
It’s now August and since I know not what to do, nor have I found a hopeful treatment, I have just decided to put things on hold again and try to live as normal as possible. I know that I can’t ignore this forever, but I just don’t know what to do. I long for the day to enjoy a nice release on the toilet.

Any spark of hope would be much appreciated.

Submitted in the Colitis Venting Area by: “Sir Poops-A-Lot”




4 Responses to 12 Year Veteran of Ulcerative Colitis

  1. Adam
    Adam August 13, 2011 at 8:19 am #

    Hey there Sir Poops-A-Lot,

    I am really wondering after reading your story several times if you have ever had a doctor suspect you might have Crohn’s disease instead of Ulcerative Colitis? The reason I say this is it was my understanding that Crohn’s patients were/are more commonly dealing with sores and ulcers in areas like the mouth (and bascially the entire length from mouth to anus as you described).

    Anyways, I don’t know how different the treatments might be, but it may be worth a try at talking with a doctor again to see if the UC diagnosis is 100% correct. I’ve said the story hundreds of times on this site(well maybe not that many) but my uncle who had Crohn’s Disease was originally diagnosed with Ulcerative Colitis (by Dr. Crohn himself back in New York many moons ago…)

    One question I have, is when you mentioned above that you have already tried diet as a treatment, could you give a bit of detail on what you did? What type of diet did you follow, what things were you eating etc… I myself use the SCD diet alone, and its worked great, which is part of the reason why I post about it on this site so much, and also because so many others seem to have success with it too. But I’d be interested to know what stuff diet-wise you have already tried without success.

    Hang in there Sir Poops, you and your wife definitely should be living a care-free life without poops-a-lot worries.

    thanks for sharing your story, and I look forward to hearing back from you,
    Adam

  2. OrdinaryWorldWhereRU August 13, 2011 at 4:36 pm #

    I am sorry to hear everything you have been going through. I too have had mouth ulcers that basically would cause tears to stream out of your eyes involuntarily if you moved your teeth, tongue, swallowed, ate, or drank. I notice that when I am in remission, they go away. When I am flairing, they come back. I hope you don’t give up on the search for a new doctor and a new treatment. I am on Remicade, 3rd infusion, and it is working so far and I have had no side effects yet. For the ulcers, I use an OTC rinse made by Colgate and it does help. You should be able to find that at any drugstore. I had to use it multiple times a day. I also have the medicine ‘pen’ that has a brush and you apply the meds directly to the mouth ulcer. That was also an OTC purchase. It helped to in that it numbed the pain enough so I could eat and drink. If you try the rinse, it does hurt while swishing it (don’t swallow) but relief does come after.

  3. michael August 14, 2011 at 6:38 am #

    I’m not sure why more people with Crohns & ulcerative colitis don’t know about the SCD…the specific carbohydrate diet.

  4. Sir Poops-A-Lot August 16, 2011 at 5:21 pm #

    Hey Adam,

    The very first doctor I had at 17 years old said, “I’m pretty sure it’s Ulcerative Colitis and not Crohn’s.” A diagnosis like that makes you feel great doesn’t it!? However, my very last doctor (who is supposed to be a better doctor) said, “You have severe Ulcerative Colitis.” He told me from the colonoscopy he had determined that the whole colon was inflamed. He also said that he inspected the first few inches of the small intestine and observed that it was perfectly healthy.

    It’s been a few years since my diet excursion. I remember doing a sugar-free diet several times. This diet excluded fruit, white sugar, and any “ose” ingredient suffix found in grocery foods. I basically could eat vegetables, meats, grains, and dairy as long as there wasn’t any added sugar to it. I did this diet for several months with no signs of improvement.

    I also did a gluten-free diet, Atkins, a no white flour diet and many elimination diets. All kinds of weird diets. I ate peas (yes, those nasty green mushy balls of poison that I still cannot eat to this day) for breakfast lunch and dinner for a week. I did the same type of diet with fish–Salmon to be exact, but I only did that one for a couple of days because I couldn’t last much longer.

    I also did a couple different nutritional drink diets, but I can’t remember what they were or the specific details.

    I can’t remember what else I tried, but I know it was more than this. It’s amazing how much food becomes off limits by just excluding something like gluten or sugar. My experience clearly shows that when you are desperate, you’ll try anything!

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