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30 Years With Colitis AND Still Living the Good Life

Meet Rosanne:
57 year old female. Diagnosed in 1982 at 27 years old. Hospitalized 2 times 1983 and May of this year 2012. Have 3 children. Current meds 20 mg prednisone, .375 Apriso (4/day), Mercaptopurine-6MP (3day/2day/2day/3day cycle). On Atenolol for a rapid heart beat I have had since in my teens…put on it about 4 years ago because doctors just brushed it off. A few years back told I have sliding hiatal hernia with schazki’s rings. No heart burn or typical hh symptoms. Was also checked for gallbladder but they said no issues with it after a ultra sound scan.
Colitis Symptoms:
Knock on wood…don’t want to jinx myself…but doing well. 2 visits to the throne a day. Big change from February-May 10 of this year when it could have been 20! Yesterday I had an EGD (scope from the mouth to my stomach) and they told me I have gastritis. Cannot find a connection between UC and gastritis. Checking for H.Pylori. In the past 8 months or so have had episodes where I had a severe chest pain attack…like a knife going through to my back.

Rosanne’s UC Story:

Curious to know if anyone else has gastritis and UC.

Over the past 30 years I have been really good or really sick. Fortunately only hospitalized 2 times….30 years apart. Not bad. Also…I have only lost 1 day of work in those years and that was in May. I raised 3 children. My symptoms started in my 2nd pregnancy but they told me it was hemorrhoids. 8 months later, I finally went to the best GI in Western PA. I am still seeing him. He told me a few months ago very, very few of his patients have had surgery. When I was pregnant with my 3rd child, all my symptoms vanished. I do not remember when they came back after that but it is a constant up and down with me. One thing…when I get stressed over things that happen that I cannot change is when I flare enough to get stressed and then flare. February is the worst and I can pinpoint the day and time of the issue. It was downhill from that moment. Finally ended up in hospital. Although I had acute stomach pain just above my belly button and it radiated down my right side. Thought it was appendicitis. They did a scan…said it was UC flare. Then they isolated me…thought I ‘might’ have c-diff. Fortunately that came back negative. Was on IV of potassium and 80 mg prednisone/day. Stayed 4 days. The stay was very relaxing and healing for me.  Got back home and within a few days was doing well. I was seen by 2 docs in my GI’s practice but not my doctor. My doctor isn’t sure my pain that sent me to ER was UC related as UC usually isn’t acute pain.

Soooo… As I said I get these chest pains…could it be hiatal hernia? Read on Wikipedia that they can cause angina like pains. GI isn’t so sure. Now I have this gastritis hanging over me. Saw online that gastritis can be auto-immune…as is UC. It is like my body’s army is attacking me from all sides!

Where I’d Like to be in 1 year:
Hopefully my symptoms of UC will be just as they are now…quiet. It takes the people around me to keep things in perspective and calm to help me stay this way. They generally don’t understand that though. Pray that all is status quo and we find out this gastritis thing. Also…it would be great to lose about 30 lbs. Some is prednisone related I know…but my weight keeps going up and up.
Colitis Medications I’ve Tried/Trying:
The least productive & expensive med is Rowasa enemas! When you are in a flare they are just a waste…put them in and flush them down the toilet 10 minutes later! The best med I have been on is 6MP aka Mercaptopurine. If you are on it, be sure to get your bloodwork down on schedule. THAT is important.

written by Rosanne

submitted in the colitis venting area

9 thoughts on “30 Years With Colitis AND Still Living the Good Life”

  1. Hi Rosanne, Sorry to hear about your recent flare and gastritis/hernia complications, but that’s great news that you’ve managed your colitis with relatively little trouble for so long! Did you do anything special to help yourself feeling good for those 30 years between hospitalizations, like change your diet or take maintenance meds, or was your body behaving all on it’s own?

  2. Rosanne

    Hello Liz!! Nice to hear from you. Actually the first thing anyone ever says when I tell them I have UC is do you have to have a special diet? Thirty years ago my GI told me that they didn’t know what caused UC…and that if I eat something and it bothers me don’t eat it. Fortunately I have never had a food disagree with me. Most of the 30 years, I have been on medications except when I was pregnant in 1989. It was always either sulfasalzine or in recent time Asacol and Apriso.

    Also the majority of the time I was on low doses of prednisone. Believe it or not, my bone mass has not been compromised. A few years back I had a full scan done of my hips and it was normal. About a month ago while at a lab for other tests, they ran a quick heel scan and they said it was the density of a woman much younger than my 57 years. So I am blessed in that regard.

    About 6 years ago when I had a bad flare, my GI introduced me to Mercaptopurine (6MP) I believe that with the prednisone has been beneficial.

    Right now I am on a rotating 3 per day/2 per day/ 2 per day/ 3 per day/ 2 per day/ 2 per day schedule of 6 MP along with 20 mg of prednisone and 4 .375mg Apriso per day. I was on 80 mg prednisone on IV in hospital but tapering down. Hopefully can get down to 10 mg prednisone in next week or so.

    Amazingly…with all the flares I have had over the years, I am 50# heavier than when I was first diagnosed 30 years ago. I have gained another 15 in the past 6 months! Not sure why I keep gaining as my eating habits are not enormous by any means.

    As I mentioned before…my GI says he does not have many patients that ever had surgery. He said he does have patients in 70’s & 80’s that have been patients about as long as me. So hopefully I can continue this path.

    One thing I can say that I know aggravates me almost immediately…when things ‘happen’ in my environment. For example: People close to me arguing with each other and not speaking to each other over stupid things. Neither will budge..that is what put me in the hospital this spring. Things that just eat at your heart & soul that I cannot change and no one will see the light. If I could do away with that kind of stress, I would never have a flare.

    Good Luck to you! If I can ever offer any advice off my experiences please feel free to ask.

  3. Hi Rosanna,
    I have gastritis and UC too, However the doctor said the gastritis was’nt related to the UC, but I don’t know. He gave me a prescription for pantoprazole to take for 30 days and he said the gastritis will be gone after, but we’ll see…. I have a feeling that it’s related to Uc. Anyways, I just started the medication this morning, so we’ll see how this goes… (I had the prescription for two months before I decided to take it)

    Good Luck to you :)

    1. Rosanne

      Hey Livia…I did read online somewhere that autoimmune can cause gastritis.
      I am afraid of anything that can cause osteoporosis. Especially since I am over 50.
      I need to call tomorrow to see what the game plan is for me. I was at work today and just got a VM.
      Best of luck to you!!

  4. Hey Rosanne!

    Beautiful that you are ‘good’ at being sick…lol!

    Weight gain is likely just due to steroid (pred) use, but then, you probably already knew that!

    Love your story and keep on being good at being sick!!


    1. Rosanne

      Thanx Bev!! Never thought about it quite like that. I will have to remember that when I have a day that I think I am not good at something!! :) Healthy wishes to you!!

  5. Hi Rosanne,
    I to am a 30 yearer diagnosed-although issues forever! I’m 44, no meds right now and keeping fingers crossed since I am allergic/intolerant to ALL! Anyway, I ended up having my gallbladder out a few years ago after having all heart symptoms. It took about 3 months to figure it out, a few trips to Er including a 5 day stay to check a bunch of things including a heart cath. Since heart disease runs in my family, too! Plus I was on remicade at the time. Anyway, 1 more trip to the Er and with some research, one Er doc. Thought it might be related to gallbladder and got a Hida Scan-pretty sure that’s what it was called and voila, the glowing fluid was taking hours to get through!! Well, hope this helps.
    Good health, Shelly

    1. Rosanne

      Wow Shelly…that is an interesting path!! So the UC is still okay in spite of the gall bladder issue? I am happy for you. You have dealt with UC for a long time!! Yes, 30 years is 30 years…but you were a young girl. That must have been very scary for you. Wishing you continued health!!

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