Stupid UC

Meet Leah:

My name is Leah, I am 34 years old. I was diagnosed with UC when I was 20. In that time, I got married, had two beautiful daughters, got divorced, and have recently started a new job. I am currently in a flare that seems to be getting worse daily.

Leah’s Colitis Symptoms:

Erythma Nodusm….has anyone else dealt with this? i woke up last Sunday and my right ankle was so swollen I couldn’t walk. Since then, it has stopped hurting so bad, but bright red, painful, hot lumps have sprung up on my lower legs. Joint pain….I feel like I’ve been in a car wreck. Running to the bathroom about 10-12 times a day. Sometimes bloody, sometimes not, mostly just mucousy and disgusting.

Leah’s Colitis Story:

I hate UC. I am currently in a flare, which is no surprise, because it seems that my flares usually happen in summer, specifically July. I don’t know why that is. I have been doing the SCD since January and was noticing real improvement, so had begun tapering down on my prednisone. I have been on this ridiculous, horrible drug for a very long time. Every time I try to come down to 10mg and below, I have joint pain that lasts a few days. At the end of June we had a major storm that put our power out for over a week. Stores were closed and it was really hard to get bare necessaties, let alone the fresh stuff I needed for the diet. So, I ate what I had because I had to. I ate a pop tart and almost immediately knew that I had screwed myself up. I’ve tried to go back on the diet, but think I need to start on the intro again, because I’m still having a very hard time. Last week my legs and ankles swelled and were so painful I could ba rely walk. Now I have lumps all over my legs and they hurt and are hideous.
I do not currently have a GI doc. The last one I went to (before I had insurance) did not run tests on me or barely even touch me. He heard that I had no insurance and pretty much told me that he wasn’t going to scope me because of that. Then he re-upped my prescription for prednisone and told me to adjust it to how I was feeling. I have asked my GP for a referral, but they haven’t called back.
It is so disheartening. I feel like no one I talk to understands. They can’t imagine how I can be up and normal one day, and the next day feel like I am on my deathbed. Why can’t I just be normal? It is so hard to live like this and have no one to help me, and to be the mother of two kids who still depend on me for pretty much everything. I worry about what having a mother who is sick is doing to them psychologically. I have such guilt about not being able to do more for them and with them.
I just wanted to rant a little bit. I know it will get better eventually, it always does.

Where I’d like to be in 1 year:

Off prednisone forever.

Colitis Medications I’ve Taken/Taking:

Prednisone 10mg, 5mg on alternate days.

written by Leah

submitted in the colitis venting area




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7 Responses to Stupid UC

  1. OrdinaryWorldWhereRU July 29, 2012 at 1:07 pm #

    Leah,
    I am so sorry for what you are going through and even more sorry that your last doctor appears to be uncaring. There are caring doctors out there so don’t give up hope. Maybe starting SCD fresh will help your system settle down? I don’t know, maybe some of the SCD experts can give some guidance. Things will get better. I know its hard because I struggle to find that ‘zen’ place myself but maybe if we work towards that, it will reflect in our health.

  2. Jessica from Ohio
    jessica July 29, 2012 at 10:47 pm #

    Leah,
    Sorry to hear what you are going through. I have heard that the prednisone can cause edema in the legs and arms…. not sure if that is what you had happen. Prednisone is a horrible drug, but it seems to be the thing that helps with the sysptoms (if the horrible side effects dont get ya!) My diagnosis was in april of this year, I dont have insurance either. Wasnt fond of my GI doc I got while in hospital so with no insurance I called my fam doc to ask for a referral…. I got it that same day. I had to wait to go see the new GI doc so I could save money to go in for the visit. Seems that the GI docs want paid up front or at least that is how it seems to be in my area.

    Dont let this UC get you down or prednisone for that matter. No one will ever really know what it is like to have UC unless they have it! I know how very hard it is to try and explain to someone the way your body can change and you go from fine to feeling like crap the next minute. Hang in there! This site helped me alot after I was diagnosed…. just being able to complain in detail, read other peoples stories of the meds, and sysptoms and just knowing there were alot of other people out there dealing with some of the same issues & I wasnt alone helped alot! Hope you get your flare undercontrol and you get back to feeling better. Take care =)

  3. Bev July 30, 2012 at 5:15 pm #

    We understand!! Doctors generally suck and in my opinion, do not have our best interests at heat.

    Please please PLEASE, try a good probiotic (50 billion per capsule) for at least two months. You will feel better, and hopefully, be able to get off the drugs!! No kidding.

    I have pancolitis, and have been ‘cured’ for six months now. I was on a high dose (12 pills) of asacol per day and it was doing nothing but making my symptoms worse. On my own, and against my doc’s advice, I started a fantastic probiotic (he said not to waste my money). Well, two months later I was feeling so good…no pain, no urgency, etc, taht I decided to taper the asacol, one at a time. I did that, and still felt great.

    Since then, I have added L-glutamine and astaxanthin, and now the bleeding is gone too! It’s like I’m normal again!!

    Don’t waste my money on natural stuff? It’s costimg me about $50 per month and it worked!! The asacol cost me $400 per month and it didn’t work. It was a no brainer!

    I wonder just what these doctors really know…

    Cheers, and keep smiling…no matter what…okay? Please? We all really do understand what this disease can be like. Get better. Just try what I told you.
    Bev:)

  4. Leah July 31, 2012 at 12:20 pm #

    Thanks, guys! it really helps me to know that I’m not the only one. I finally got an appointment for tomorrow, at the doc that i didn’t want to see, but I have to do something. I’m wondering if I can ask for a second opinion regardless of what they tell me in order to go to another doc? I just really hope to find someone who will respect my wishes to get off the prednisone and work with me to find some other way to heal. I will post an update after the appt! wish me luck:)

  5. leah August 1, 2012 at 1:38 pm #

    ok…so i just got back from the doctor. She confirmed that the mess on my legs is Erythma Nodosum. We went through my history, and she suggested that it could be possible that what i have is actually Crohn’s. However, when she asked me about smoking, and i told her that i happen to have been initially diagnosed the first time i quit smoking, and i get better when i do smoke, and flare when i quit for a while, she said that it was almost positively UC, because smoking would make Crohn’s worse. So she told me to maybe think about wearing a low dose patch and upping the prednisone a little. I have a scope scheduled on the 17th, and we will go from there. she also prescribed me aprisa, which i have never been on before, and she told me to see what that was going to cost. she gave me a discount card for it and hopefully it will only be about $25 a month. she was very open to getting me off the prednisone for good. overall it was a good visit, i still don’t know a lot, but should sometime soon.

    • Bev August 4, 2012 at 7:48 am #

      Isn’t that amazing about smoking. I wonder what and why smoking has to do with this disease. Back a long time ago, when I smoked…I had no signs of UC at all. After I quit, all of a sudeden, I have this stupid disease. Do we cause it by smoking, I wonder? I hear this same story time and time again.

      You sound alot more upbeat, Leah, and I’m glad. I hate those bad days of frustration that we all get from time to time. They always do pass, tho. Especially if you can talk to other people who actually have this disease. If I had not found this website, I really don’t know where I’d be now!

      Cheers, and happiness my friend!!

      Bev:)

  6. Steve August 1, 2012 at 4:38 pm #

    Hi Leah! You were probably right about having to reintroduce yourself to the SCD diet. It worked before so it should again, once you balance the bacteria again. I would suggest that, and maybe adding a SCD legal probiotic. I know how it is to not have insurance and be going through all this. If you look around, you might find programs in your area that can help you. Keep us updated? Thanks for sharing your story.

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