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Would You Do It?

Diane with her grandson!

Diane with her grandson!

Introduction:

I love learning and I will research anything for anybody at any time. My dream is to have a PhD. even though I do not use my degrees for income at this time. I call my self the bedroom scholar as I am a certified teacher, psychoanalyst, certified hypnotherapist, and dream analyst. I currently work full time as a kitchen designer for a major retailer.

I love hiking, spiritual dance and chant, movies, cooking and baking, and visiting my grandson.

Current Colitis Symptoms:

I have been on the SCD diet since July, 2014 and it has worked for me. I have firm stools but I know the disease is not in remission because I can feel the ulcers at times, and I have occasional light bleeding and fatigue. Arthritis is also a problem.

Diane’s Story:

My name is Diane and I have what is now known as Ulcerative Colitis. I was diagnosed in October of 2013. I am 54 years old and I can remember colitis symptoms as far back as 15 years of age. Never having been tested or hospitalized, mainly due to the fact that I would stop eating and start dieting at the first signs of distress due to the embarrassment of unbelievably painful cramping and diarrhea, I eventually found a host of triggers to stay away from during these “flares”. This treatment served me well until I was 30 and my bladder became inflamed.

The colitis was forgotten for the next 23 years as I moved through low grade chronic depression, invasive cervical cancer, hysterectomy, skin cancer, and Lyme disease. I was never a candidate for chemotherapy since my cancers where caught early and surgically removed. I had a flare with bleeding during this time but colitis was never mentioned and a sigmoidoscopy showed nothing.

My mode of treatment was diet, mainly the Eat Right 4 Your Type – (from Amazon.com) blood type diet, Bactrim, which is an antibiotic prescribed for my bladder and lots of sleep.

I am now being asked by my doctor to be part of a low dose methotrexate study which will involve weekly injections and the keeping of a journal.

I’m looking for advice as to whether to participate or not. I have been fighting so much for so long that I am confident that the injections could help me but at the same time I do not want to loose the health I have fought so hard to maintain. I wonder if cutting back on stress wouldn’t be a better alternative since I know it has been ever present in my life from a very young age. I also have an elderly partner and mother at the present time. My father is deceased. If you were me, what would you do?

Medications / Supplements:

Lialda: can only tolerate the maintenance dose of 2- 1.2g tablets a day which is not enough to put me into remission or control the disease in general.
Mesalamine enemas nightly.
Vitamin supplements.
Fluoxetine for depression.
Fish oil.
SCD diet.
Glucosamine Chondroitin for joint pain.
SCD probiotic yogurt.

written by Diane

submitted in the colitis venting area




blood type diet, methotrexate

5 Responses to Would You Do It?

  1. Mark December 6, 2014 at 5:36 am #

    Hi Diane,
    I’ve been diagnosed with UC a little over 2 years ago. I was against all meds and was trying to control it on my on. I ended up hospitalized for over 10 days and they put me on everything, steroids, Imuran, mesalamine enemas, lialda, remicade and nothing was helping.
    Started scd and slowly started improving. With the help of meds and diet went to what dr’s call remission. I’ve also learned that it takes a very long time for your colon and body to heal.
    Anyhow I stopped the Imuran and flared again so my dr. Wanted to enroll me in the same study. I asked if I responded to Imuran why don’t I get back on it. He said he would get in the study. Went for a second opinion and they put me back on Imuran and stopped everything else. Now, I am feeling great, gaining weight, solid bowls and have the occasional bleeding (when I’m stressed)which i can live with. Hoping to start tapering the Imuran in the near future.
    My point is, have you tried stress management or any of the approved immune modulators or anti-tnf’s that are approved for UC before enrolling in the study?
    From what I understand that you are allowed to be on prednisone 40mg when enrolled in the trial so initially you’ll feel better. I know 3 UC patients that were enrolled in the methatroxate trial sponsored by the NIH. They did great initially because of prednisone but couldn’t maintain a complete remission with methatroxate alone. Your case might be different of course.
    I’m not a doctor but I would also try getting a second opinion before enrolling in a trial.
    Sorry for the long response but I hope this helps

  2. Erin December 6, 2014 at 2:45 pm #

    I participated in that study and I am in remission. I won’t know if I received the methotrexate or placebo after the induction phase until after the study is completed. When I completed my trial, I opted to stay on the asacol HD but not continue with the injections. I finished the study 11 months ago.

  3. Diane D
    Diane December 6, 2014 at 3:11 pm #

    Thank you for your responses. I’m having a hard time accepting the idea that methotrexate may be the best thing for me even with stress management and/or prednisone. I’m curious as to how sick I will get on the methotrexate, or how sick I should get would be a better way of putting it. Since I have had cancer and my arthritis is barely under control, I’m leaning toward participating in the study. A lot rests upon my January colonoscopy.

    Diane

  4. Tony (UK) December 6, 2014 at 4:16 pm #

    Hi Diane, I was originally diagnosed with UC 4 years ago after years of misdiagnosis and pain. This was later changed to indeterminate colitis as they weren’t absolutely sure if I had UC or Crohns, and then last week I had it confirmation it’s definitely Crohns. I have very few days without pain and frequent flares, my medication at the moment per day is 4800mg Mezavant XL, Clipper 5mg and Adcal-D3 300mg, Predfoam they also started me a weekly dose of 8 x 2.5mg Methotrexate and 1 x 5mg Folic Acid. I was asked before being proscribed the Methotrexate if I would prefer to take it in tablet form or by self-injection. Being a born coward I naturally baulked away from self-injection especially as she said you inject yourself directly into the stomach. Undeterred she retrieved a plastic cylinder about 5 inches long from her desk draw and proceeded to show me how the injection worked, it was a kind of a plunger that you cocked like a gun, held against the skin then fired. Actually after seeing how it worked, it didn’t look so bad and thinking of my son in law who injects himself everyday because he’s a diabetic, I thought ‘come on don’t be such a wimp’. Anyway I threw the ball back in her court and said I will take the drug in whichever way she thinks is best for me, hence the proscribed tablets. So far I haven’t noticed any benefit at all and apparently it could be several months before I do. I’m having to go for blood tests every week for 8 weeks and the tests are more than the normal infection, iron deficiency etc. indicators. Apparently Methotrexate can bring to the fore conditions that lay dormant in the body and may never have shown themselves without the Methotrexate’s help, HIV, chicken pox, shingles etc. Don’t mean to sound alarmist but I’m sure these things will be explained to you, I was with my specialist nurse for over an hour having everything explained and the options open to me with the positive and negative effects explained. They can’t give me Prednisolone anymore because I’ve had so much it would be dangerous, I’ve been tried on so many drugs, Azathioprine, Budesonide that have made me even worse than I was already, the last lot Mercaptopurine nearly killed me, I ended up in the hospital A & E department, god I’ve never felt so bad in my life. I’m pretty sure the Methotrexate is a last ditch attempt before they put me on Infliximab (Remicade) infusions. You can only do what your specialist doctors advise, they are the experts. I’m sure if they recommend you take part in the study, its in your best interest. The only other thing I would say is you want them to explain everything in detail because it’s your body and you have a right to know. All my best wishes whatever you decide.

  5. Diane D
    Diane December 7, 2014 at 5:52 am #

    Thanks for the advice Tony and I wish you the best.

    Diane

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