Mentally and Physically Tired of Ulcerative Colitis

Background:

I was diagnosed with ulcerative colitis at age 21. Now age 24 going through second flare.

 

My Current Story:

Hello. I am a 24 year old student going through my second flare with Ulcerative colitis. The first time around, I had waited close to a year of showing symptoms before I felt that I had to see a doctor. I did not have insurance at the time and as the symptoms got worse( Eventually I was going to the bathroom 20-30 times a day with lots of blood) I felt more scared to see a doctor. After my first examination, The doctor started me off with 6 Asacol daily. Eventually I was prescribed 12 Asacol daily, 6MP, Canasa, and at the highest 60mg daily prednisone. After about a year of being on medication, I felt like I was better and eventually stopped taking my medication. I was under the impression that I had beat the disease. I was happy, all though the presumed victory did not come with out its price. My stint with the prednisone ruined my relationship with my girlfriend of three years (now ex girlfriend). I had used all my savings and had to borrow money from my parents to cover the cost of my meds. I was happy to feel healthy none the less. About 4 months ago though, my symptoms came back with a vengeance. my symptoms quickly escalated until I was going to the bathroom 20-30 times a day again, this time I had less blood but my abdominal pain seemed worse. My doctor started me back on Asacol and prednisone. After only seeing marginal improvements, my doctor performed a colonoscopy, while I was flaring. It was excruciatingly painful. My doctor let me know that My flare is more severe this time and most of my colon was effected. I am currently on Asacol, 6mp, Hydrocortisone suppositories, and 60mg of Prednisone. I am genuinely scared because this time around the prednisone does not seem to be working the way it did last time. Over the last couple of years, I worked very hard to transfer to the college of my dreams (UCLA) and I have been accepted for the up coming fall semester. I am not sure if I will be better in time to attend fall semester. I am worried that my life as I have planned will not be possible. I am trying my best to keep a positive outlook, but I catch my self feeling angry and depressed. It feels surreal sometimes that this is happening. I don’t know what to do really to keep hopeful. I am usually pretty well put together, but I can’t go half a day with out crying my eyes out. I just feel so tired both mentally and physically.

Medications:

Asacol X 12, 6MP, Hydrocortisone Sup X2, 60mg Prednisone

Submitted by: Jae




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4 Responses to Mentally and Physically Tired of Ulcerative Colitis

  1. jennifer May 18, 2011 at 9:13 pm #

    i am so sorry you are going through this. ugh..prednison….my husband complains when i am on it because i am so moody, ect. i to was going to college when first diagnosed. my dreams just shifted alittle. I am still happy with what i am doing now…well when not on prednison. ha. actually i am glad i didnt go for the degree i was going for. odd how things end up working out even though it seems like the end at the time. have you tried getting assistance with the no insurance thing?

    • Jae May 20, 2011 at 10:17 am #

      Hi Jennifer. Thanks for your kind words :) Prednisone can be awful for sure! I have been trying my best not to be abrasive and angry towards the people in my life, but I often catch myself being an unreasonable brat. Since I wrote my post, I have been doing a lot of thinking and trying to get myself to accept my situation. I realize I am not in the best place, but things could be worse. I also realize going to college would not mean much if I was sick, so I decided to focus on trying to feel better for the time being! Life is happening right now regardless of my plans! My doctor signed me up for an assistance program to cover the cost of Asacol which should help me a lot if it works out so I am hopeful. Have you gotten a handle on your UC? I hope all is well!

      • kb May 27, 2011 at 8:14 am #

        Jae

        I’ve had UC since 1999. In my worst flare (2003-2004), I was taking about the same medications as you. I was on Prednisone for several months before they did a colonoscopy and prescribed hydrocortisone enemas. The Prednisone didn’t really seem to help, but the hydrocortisone really did and quite quickly.

        What I want to caution you on, that nobody did me, is long term side effects of Prednisone. Do what you can to get off this as soon as you can. You are probably aware already of the side effects while taking the drug (which includes the mood swings and many other things on high dosages) – but look into the long term sides effects.

        As a fairly long time UC “sufferer”, I also want to let you know there is hope. I am currently taking just Asacol, and have been for several years. I’ve only had a couple minor flares, and they were taken care of with increasing Asacol for awhile.

        Another suggestion…watch your diet. Pay close attention to what seems to make your symptoms worse. Eliminate those items completely while flaring, and limit them at other times. I’m sure everyone is different, but here is my list of worst foods: alcohol (worst for me!), nuts/seeds, raw fruits & vegetables, dairy, spicy/greasy foods, and diet drinks that contain asparatame. Staying away from these REALLY helps me. Again, start to recognize what bothers you and stay away or limit it. Sometimes when a flare starts, I will eat soft foods/liquids/bland food for a few days. Seems to help me. Drink lots of water and take a good multi-vitamin supplement to replace what you may be missing by eliminating some of these foods!

        Hope this helps, and hope things improve for you!

        • marcia May 29, 2011 at 7:56 pm #

          Jae,

          I was diagnosed with Severe UC almost 2 years ago. I am now in my second flair which has lasted 7 months and still going. I had to quit my job 6 months ago leaving me with no insurance. So I feel your pain on the insurance situation. I have been hospitalized 2 times in the last 3 months, and since prednisone is no longer working I tapered off of it. My current doctor has started me on Humira which I get for free through there assistance program, its very expensive so I am very thankful. I get it for a year free and then just reapply if I need to for another year. I have been doing the injections for 8 weeks now and am still in a flair up but am noticing improvement. I have also started the SCD diet which seems to be helping as well, I still have days where I lose it and cry as well. I was healthy until the day I got UC, I hope this helps maybe you can look into humira or remicade if your meds are no longer working.

          Marcia

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