Just Trying To Get Back To MY LIFE

Introduction:

my names Erika. I’m 22, I was diagnosed with ulcerative colitis when I was 17, its been 5 years! I’m currently a dental assistant and student in the dental program.

Colitis Symptoms:

I have a flare up right now its been a while. constant bathroom trips, the stomach pains, joint pains, all the great stuff that comes with it.

My Colitis Experience:

I was diagnosed with uc in highschool i was 17, i never took it to seriously since it didn’t really affect my life at the time. i noticed small things changing but never told my family since i wasn’t in pain.  The blood started slowly then i got scared…my parents took me to the hospital 3 different ones where 2 of them told me i had a bacterial infections gave me some anitbiotics and i would be fine but the problem continued  for 2 months till a doctor finally said somethings wrong here and that’s when i was 1st sent to a gi then came the colonoscopy the results uc!! i had no clue what it was or why i had it. Being so young it didnt mean much since i felt good.  Around the time of my graduation a year later came all the pain and bathroom trips then it hit me, “I’m sick!!”

Started all the medications… they kinda worked… but seemed to fail.  I tried prednisone and asacol. Then i just stopped taking the meds thinking there was nothing that could help so i would live with it . so 2 years later dealing with the flare ups i had finished school for dental assistant got a good job and decided to move out with my friends 4 months in i got a flare up but not like any other flare up i had ever had the pain and bathroom trips feeling weak every horrible thing u can get with uc i had it! got to the point where i had to miss work which means missing money from checks. To make the bills, I started using my credit cards. Just more debt added to school loans.

I couldn’t do it anymore,

I had to take a whole month off work,

and I moved back with my parents.

I focused on getting health.   I started seeing my doctor again she put me back on prednisone 40mg.  I’ve been on it for going on 6 months and i hate it!!! the weight gain the facial hair the bump on my back my round face its horrible. it has helped me feel a little better but not great will i ever? i feel like no matter what i do this is not stopping…its effected my life so much in my job school and social life. How can i balance it all when theres days that feels like its never ending?

Colitis Medications:

Currently on prednisone 40 mgs. It works but horrible side effects. My doctor just prescribed me pentasa I haven’t taken it yet i wanna learn more about it?

written by Erika

 




pentasa, prednisone 40mg

3 Responses to Just Trying To Get Back To MY LIFE

  1. sc February 18, 2012 at 8:56 am #

    If asacol did not work, I wouldn’t bother with pentasa, it’s not likely to do much either. You can try sulfasalazine, an older drug of the same class of drugs which works for some people, otherwise, you might have to go up a notch to immunosuppressants but you really need to speak to a good GI about this. You shouldn’t be on a high dose of pred for so long with out tapering, follow up etc either. Can you get a second opinion?
    Good luck to you.

  2. Amos February 18, 2012 at 8:22 pm #

    Erika,

    SC is right. You really need to get off of the prednisone. It is only for short term usage and will ruin your body long term. You should be on (or at least try) a max dose of a oral 5-asa (mesalamine) drug. I take Asacol but there are many (including pentasa). If that’s not enough your GI can add suppositories (canasa) or enemas (rowasa or cortifoam) on top of your oral 5-asa. If that doesn’t work you need to look at starting a long term immunosuppressives such as 6-mp, imuran, remicade, or humira so you can get off the pred. None of these are with out risks but they have less of the long term side effects/risks than 40 mg of prednisone forever. I would also SERIOUSLY start looking at your diet and supplements as an adjunct. Most GIs are clueless about this but diet has kept me away from the scarier immunologic drugs and I used to be on 6-mp for years. Adam has done some great vids on SCD. Check out scdlifestyle.com. Good luck.

  3. Bev February 19, 2012 at 9:21 am #

    I’m so sorry Erika. I know just how you feel…like the flare will never end. This disease can really allow us to feel helpless and hopeless. The doctors really don’t help us to feel any better emotionally. We almost are made to feel like WE are the failures, when the meds they prescibe us, don’t work anymore.

    I am with everyone else here…try natural stuff, like diet, and/or lots of probiotics, maybe even fecal bacteriotherapy, if you can locate a doctor who will do it. Really…try it!! All of these prescription drugs that we are given are NOT a cure and they never will be. I believe that they can just add to our problems, but don’t ever solve our problems. Doctors are taught to go by the book, and just slam things into ‘remission’, but in doing that, we sometimes get hurt in the long run.

    I know it’s sometimes easier to listen to our doctors and just to take the meds, and to not think for ourselves, but we must. It seems like that is the only way we can help ourselves to get better instead of feeling worse on the medications. Remember, doctors are taught to do things a certain way, and are also taught, not to offer us the natural options.

    Cheers and all the best,
    Bev:)

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