Grateful for the Site

First of all, thank you to Adam for not only putting this site together, but for leaving my member name listed and ready to blog even though I have been MIA for a few months.  :)

Back in March after frustration with my very expensive daily meds, Lialda, I opted to take myself OFF of all meds and begin the Specific Carbohydrate Diet. Well, let me be the bad example here. (lol.) I was so eager to live “normally” that I just dove into list of “legal” foods and called it the SC Diet. By the time I received my copy of Gottschall’s book, I was already hurting. I began the process in the wrong way. I would love to try this all again in the right way, but I first need to be in a better place.

This week is not a good one. I am back on steroids, soon to be 6MP. After a doctor visit on Friday I found that my condition went from mild/moderate to moderate/severe. My Colitis can usually be controlled using treatments of Rowasa. This worked so well because the worst of my UC was “immediately upon exit,” so enema meds works fast and well. When this failed to work this last time I knew something was up.

Sadly, my family and I have gotten used to the “running.” Mornings are always my bad time. The family all knows this. This time, I really got a full on attack. I have been incredibly weak, achy joints, dehydrated, at times unable to stay awake (… as a Mom, this cannot happen!)

About a month prior, my husband took me in to the emergency room for what I thought was OB/GYN-related cramping. I had NO unusual UC symptoms at the time. After eleven years of being diagnosed with UC, I knew just where and how my system is affected. The pain was not leading to any of the usual places. Regardless, after a CT-scan, the hospital wanted to admit me for my Colitis. I objected and requested to sign myself out immediately.

After this last doctor appointment I come to find that my Colitis has taken on a new area of my large intestine. This explains the poor response to Rowasa and the mystery hospital visit, which provided no other explanation.

Right now I am just waiting for some relief from the meds. I have been upset more than anything. It’s frustrating when this control freak can’t control her disease!

6 thoughts on “Grateful for the Site”

  1. Jennifer,

    I feel the same way you do. I decided to go off not all my meds, (I still take Lialda) but, with my Doctor’s permission, back in December of 2009, the 6MP. I had been diagnosed with a basil cell skin cancer, and the doctors said it was from the 6MP. I was so scared about this, and any other side effects (and I had been on it for 5 years) and the effects it might have on an unborn child (should I decide to get pregnant in the future). That is why I wanted to go off my medicine.

    So, I stopped taking it in December… by February I was in a flare. I was also having a very stressful time in my life, so to be honest, I can’t say that the flare was just from coming off of the meds, I’ll never really know. For the past 5 years, while on the 6MP I had no UC symptoms at all. So, I was in a little bit of denial that I actually had it at all. I guess the drugs worked just that well on me, other than giving me skin cancer (which I had to have removed).

    Anyway, after the flare started, I did not want to go on steroids, but after rowasa enemas not working, and my doctor’s decision to try cipro and some other antibiotic (which I think made me worse) I reluctantly started the prednisone. I was still not getting better! I couldn’t believe it! Then my Doctor suggested Remicade. After the skin cancer problem with 6MP, I researched the Remicade a bit more than I had with the 6MP. I decided I did not want to try it, and I stumbled on the SCD. I decided right then and there, that if I could control my symptoms with diet, and diet alone, that would be awesome. I would try it, and if it worked, awesome… if not, at lest I can say I tried my hardest!

    Well, it worked for some time, so I weened off the prednisone and was feeling fine. I was off the steroids for two weeks, and the bleeding came back. So I tried the intro diet again. it didn’t go away. So, a trip back to the doctor, and i was placed back on 40mg of steroids back in September. That is still where I am. I have been calling my doctor off and on with an “I think I’m getting better, but very slowly” (more slowly than it normally takes me to get better). Now that I’m not getting better, I am scheduled for a colonoscpoy in a few weeks to see exactly what’s going on with me.

    The crazy thing is, right after I scheduled the colonoscpy, my symptoms started getting worse, almost overnight. I can’t attribute it to anything unusual I ate either… so this is very frustrating for me. I don’t want to up my dose of prednisone, since I don’t think it’s helping, and I’m getting worried. So, to try to ease the symptoms, I’ve made my carrot chicken soup and am going to eat that for the next few days and hope it helps the symptoms, at least until the colonoscopy.

    If I have to go back on the 6MP, I’m welcoming it now. I’m tired of being sick, and this has gone on for almost a year now. I am no longer in denial that I have UC… I just need to see what it looks like inside now with the colonoscopy to set my mind at ease that it’s nothing more serious than that. I’m thinking, if the 6MP causes JUST skin cancer, I can just get checked out every 6 moths and hope that all is fine, at least I can live a normal life without UC symptoms… hopefully it won’t cause more, other cancers. But, now that the steroids aren’t working for some reason, I’m starting to worry myself that the 6MP might not even work, that my body might have decided it was no good too… but I can’t bother myself with that right now, I just have to wait and see.

    Like you, I also have morning issues… it’s always in the morning and the middle of the night. I’m thankful for that though, I’d rather that, than problems while at work. But, I know what you mean about being a control freak wanting to control your disease. I read so much about so many other folks controlling their disease with diet alone, and I think, why can’t I do the same thing? I’m doing everything right. So, I’m right there with you, very frustrated at the moment!

  2. My heart goes out to both of you, I hope and pray you will soon find relief from your suffering and be able to lead as normal a life as possible.

  3. Thank you, Tony … and thank you for sharing, Sunworshipper. Our stories are very much alike.

    I was on 6MP in the past and though it worked, I had my doctor have me taken out since I was planning my first child shortly after and those side effects are frightening! (Strangely enough, my doc said he has some women remain on it throughout pregnancy.) A healthy pregnancy with UC CAN happen. I have two gorgeous girls that I am eternally grateful for.

    I joked about being a control freak, but … are we all like that!? It brings enlightenment to the term “anal,” (which I have been called many times!) Maybe that is the answer to all of our prayers … we just need to chill out! ha ha.

    1. Thanks Tony! And you’re welcome, Jennifer. I don’t mind sharing. It makes me feel somewhat better knowing that I’m not alone, that there are others going though the same thing as me.

      I have heard of women remaining on the 6MP during pregnancy as well, with no side effects to the child. I spoke with my GYN about this, and he said that he would take me off the medicine while I was pregnant, and if my symptoms came back, then he would decide what to do if the situation arose. But, he told me, since I’m not planning on a family in the immediate future, to do what I needed to get myself better and to come to that decision when it happens, since I have time. (I will be 30 soon, so I know I don’t have an eternal amount of time, but some)

      I think we are all control freaks to some extent. It’s not fair that we try to live as healthy as possible, and STILL have problems. I mean, I don’t smoke, I eat healthy, etc., etc. I have been told several times that I just need to not worry about things… but when it feels like you have someone perpetually punching you in the gut, how can you not worry about that?

      This morning was the worst… my lower colon hurts terribly, like really bad menstrual cramps and the bleeding is getting worse with more D! I’ve never had this problem before… so I’m a little freaked out. I did start the chicken soup yesterday, and I will start using rowasa enemas tonight and see if that calms things down. I just need to hold out for my colonoscopy in two weeks… keeping my fingers crossed.

  4. Had my colonoscopy yesterday. Before going “down” for the procedure I summarized the week and a half on steroids for my doctor. “My colitis symptoms … the running, bleeding and frequency of the two are much better, but the feeling like I was hit by a truck and the pain in my lower right abdomen is still there.” My doctor replied, “Huh!?” and I went out.

    I woke myself up in the OR to tell the staff that I dreamt of Christmas. I’m so used to the procedure that can now complete the nurse’s parting instructions. I told her that I used to be embarrassed by having to “let go” while sitting in the recovery area, but now lifted a cheek and blew away … (after colonoscopy #12, you gotta have some fun with this stuff or you’ll go crazy, folks!)

    Upon speaking with my doctor afterward, he found that my Colitis is now “moderate” and that the steroids seem to be doing their job. He also said that the right side, that has me in so much pain is NOT Colitis. This was a relief to hear at first, and then I said, “OK, then wait, what is THAT?”

    My doctor insisted that I immediately go see my OB/GYN for additional tests and that is what I did. If you back track in this post, you will notice that I was experiencing what I thought was OB/GYN-related pain back on September 2 (on the same right side.) The hospital then tried to admit me for my then decently behaving Colitis. I NEVER SAW AN OB/GYN DURING THAT ER VISIT. Once I found that they wanted to admit me for my Colitis and had my “complaint” listed on the paperwork as “Colitis” I was so frustrated that I signed myself out. My complaint was self-suspected to be an OB/GYN issue and THAT was being ignored by my creepy looking CT-scan, apparently showing my inflamed colon.

    In short, GOOD NEWS … my Colitis has not shifted completely to the other side of the large intestine. Not so good news … I still have a mystery pain going on. Still trying to get to a better place to start to SC Diet. When you don’t feel well with ONE THING, whatever that is ALWAYS effects your Colitis. Ugh.

    QUESTION TO THE WOMEN: Anyone else with Colitis get worse during “that time of month?”

    1. Hey Jennifer, I hope the mystery pain goes away soon, or at least gets figured out. It sounds like your intuition was right on back in Sept! congrats for knowing your body! worth its weight in gold. I hope you get some comments back on your final question from the women who are here. I am not of any help for that one unfortunately…

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