Ulcerative Colitis Tips


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Gory Story

Introduction:

I’m a 67 year old musician from So. California, married, no kids, lots of step-children, grand
children, very active, no prior history of UC or Crohns in lineage.

My Symptoms:

Heavy mucuousy blood, weight gain, not too much stomach pain, sore rectum, sense of urgency with no results (constipation if you can believe that),
flatulence, weary much of the time. Plenty of peeing. Haven’t figured that one out yet.

My Story (and it’s Gory!):

Rectal spotting 11/2011. Thought it was hemorrhoids. By 1/12 bleeding escalates to point I need to see primary care MD. He sends me to GI, had colonoscopy. Am put on Balsalazide. I go into denial, refuse to take 10 pills a day, ask for 2nd opinion. Did 2nd colonoscopy, put on Asacol 2x a day, 3 pills. After 2nd colonoscopy, GI #2 says no bleeding anywhere. Day after colonoscopy, I’ve got blood Sat AM I’ve got more blood. Sun AM is grand mommy of all blood letting. Suddenly from nowhere, I get jaw pain, tell my husband, go to the ER thinking I’m gonna have a heart attack on top of every thing else. I had taken cell phone photos to prove I was bleeding. I get filled with nitro, do labs, heart is fine. I’m admit me; they can’t figure out jaw pain. I get new consult. I show him the cell phone photos I’ve got! Can you believe I had to prove it? He put me on 3 x’s the Asacol, massive dose of Predni sone & Mesalimal enema. Released from hospital. Go to get my script for Asacol filled. I’m in donut hole & $ is $350. I’m out of Prednisone tomorrow. I’m not bleeding. I’ll see about getting more balsalazide. I have osteo-porosis, am menopausal. use Valium when I need it to sleep.

Has anyone here discovered some thing resembling a cure? What works best for you? Do gluten free products make any difference? Does it help to use lactaid tabs to cook with? Doctor NEVER checks my butt, probably not cute enough!

I’m disgusted thinking about this, reading about it, worrying about it. I want answers! It’s new so it’s taking up too much of my time. I’m obsessing.

I’m concerned about my quality of life, finances,
potential for cancer, out of control UC that gets worse & potential for possible surgery.

Where I’d like to be in 1 year:

I would love to be in full remission ASAP, Really, I’d like to be rid of this sucker. I want my life back I don’t want to worry about being on stage, in the midle of an act & pooping. I can’t jump off the stage in the middle of a song to go take a crap.
Embarressing, humilitaing.

I like my colon & all my body parts thank you very much & plan to keep them all. There has to be another way.

Colitis Medications:

Tried Balsalazide but didn’t use enough of it to
know if it was effective; may have to try again.

Prednisone stopped the

Lialda had way too many side effects.

Asacol seems to work in massive doses.

Mesilamil (spelling?) coated the colon (if you love enemas) & seems to have cut the inflamation.

I use Valium to sleep. Sometimes it works, lots of time, it doesn’t.

written by KarpDiem2

submitted in the colitis venting area




3 Responses to Gory Story

  1. Dede August 26, 2012 at 5:03 am #

    KarpDiem2, Damn, girl, that’s a lot to go through! I had to laugh when you had to show them cell phone hoots! It is slow going with hospitals, ERs, docs, tests….sunds like you are in the midst of it all and it can be so overwhelming! When you got to the oat about “where I want to be one year from now,” I felt encouraged by your own attitude, and hopeful for you! Here’s what I have learned, and what I would do in your situation: Reach out for help, and this site is a great place to start. Next, educate yourself about your disease. Is your rx ulcerative colitis or proctocolitis (http://en.wikipedia.org/wiki/Proctocolitis)? I would see if they could give you a firm diagnosis. I would go to the ccfa, and research how you can qualify for some medical funding. There also may be some community groups in your area that have some medical funding help (United Way may have a list). The corticosteroids are usually given the first rounds, and I don’t know if they told you about tapering off Prednisone, or if Remicade was suggested, etc. there are a lot of options, and it sounds like you need to get the bleeding under control, first and foremost. If you can take charge as a patient, that would be great: get your blood work done, and results explained, as you may be anemic from the blood loss, and that would explain your fatigue. I remember they told me I had limited amounts of B-vitamins, especially B-12 (no wonder ai was moody!). I’m really into alternative therapies: remember, everyone is different, and each colon is different, too! Maybe aloe Vera juice would work? Omega 3 fish oil capsules are even recommended by the doctors now, and there are lots of other safe and natural supplements you can be taking in conjunction with your corticosteroids. Don’t give up hope! Keep a daily food journal and eat low-inflammation foods (with your journal, you can see if. Ilk is a trigger, or wheat products, and try to go slowly and start with a bland diet, but not necessarily the low residue diet that hospitals tell you to do, which may not have much nutritious content), go for a walk (if you can) 20 minutes a day, see if you can get insurance to pay for a visit to a naturopath (accredited), try gentle yoga and meditation with a mantra on focusing on your new self in the not so distant future! Wear some kind of protective underwear when you are on stage, in case you need it (I know it is embarrassing to have pooped in your pants, believe me!) Don’t give up, and try to relax—take it one day at a time, and ask for friends and family support.

  2. Bev August 26, 2012 at 7:59 am #

    Hiu…

    As with everyone’s story…I hate to hear all of this.

    You asked about a ‘cure’. I have had UC for some 13 years now, and was on asacol for all of it. I decided to start a good probiotic about six months ago, and after two months, I was feeling so much better, that I stopped taking the asacol. Yes, they were super expensive! Over $400 per month! The probiotics are about $40 per month. Now, I’m not saying it is a cure…but the drugs were not working for me. The probiotics worked so well, that there was just no point in continuing the asacol! As a matter of fact…after I went off of it, I felt even better!! Everything ‘firmed’ up too! I did not wish to go down the harsher and harsher drug route. They all seem to eventually cease to work. When my GI said she recommended prednisone and imuran because the asacol wasn’t doing the job anymore…I totally opted out and decided to take control! No way, Jose.

    Anyway, after taking the probiotics for a few months, and being totally med free, I still had a bit of residual bleeding. I was recommended L-glutamine at the health store. It, apparently, has healing properties for the inner workings of the body, including the colon! My bleeding is now absolutely gone!! I also took astaxanthin, a natural anti-inflammatory, at the same time, just for your info. It may have just been the L-glutamine, but because I started them both at the same time, I will continue with both forever.

    Anyway, these three things are keeping me UC free, for the moment. I feel like it’s going to last forever, as it’s been over six months now! I feel like I don;’t even have this’ ulcerative colitis’ anymore! How great is that? I wish that everyone would at least try it…you don’t HAVE to go off of the meds…but if they are doing NOTHING for you, then, what the heck, right? That’s what I figured, anyway. I am paying about $50 per month for evrything!! And I always thought that natural would be too expensive…who knew?

    I love what you say about wanting to keep all of your body parts intact!! Me too!!

    Cheers…and thank you for the great post…great writing!

    Bev:)

    • Julie September 2, 2012 at 9:31 am #

      Bev-

      I’m curious to know the name of the probiotic you are on…I was seeing a Naturopath and she gave me Proboulardi, that didn’t seem to work so she put me on LactoFlamx, I’v been taking it for about a week and my UC is getting worse. BUT with any natural product you have to give it time….

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