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These Pills Are Supposed To Be Making Me Better. They Are Not.

Pill Bottles

It’s been a little over a month since my new gastro-intestinal doctor diagnosed me with ulcerative colitis. I naively believed that relief would swiftly follow treatment and, for a while, that seemed to be the case. Sadly, I now think my symptoms improved only because the prep for my Christmas Eve colonoscopy effectively cleaned out my system. About a week later, the symptoms started again. Under my doctor’s direction, I have experimented with various dosages of the same medications (Lialda, lomotil, and prednisone), but the treatment hasn’t worked to bring about remission.

What exactly are the symptoms? For me, it’s frequent (10+ a night), urgent bowel movements, accompanied by gas and cramping. About once a week, I soil my clothes when I’m unable to get to a bathroom in time. Over the past several months, this has happened on the way to work, on the way to church, at work, and on the way home. I’ve started driving while sitting on a plastic trash bag.

The prednisone is supposed to quickly deal with the inflammation in my colon to allow the Lialda to do it’s long-term anti-inflammatory work. I’ve had to cut back on the prednisone because it was making me crazy and irritable. Poor Frank has put up with a lot.

I haven’t slept straight through the night in a couple of weeks. That is, until two nights ago. These last couple of nights I’ve only been up twice. Sleep can make all the difference!

I visited my doctor yesterday and asked him several questions, including what’s next if this treatment doesn’t work, how long I should expect to continue to give what I’m doing a try, and if he has ever heard of the Specific Carbohydrate Diet, a diet put forth in the book Breaking the Vicious Cycle. He had not heard of it, and didn’t want to be educated. He believes that diet does not do anything to cure this disease (though he agrees that a liquid diet can ease the symptoms temporarily).

I bought the book and I’ve read it. Following the diet involves an all-or-nothing two-year commitment. It’s hard for me to commit when my doctor isn’t behind my doing so.

I will give it more time. I will pray that these two good nights will stretch to three, and then four, and that this is the beginning of healing based on my current treatment plan.

5 responses

  1. Ann Avatar
    Ann

    May it be so. Amen.

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  2. Gail Keefe Avatar
    Gail Keefe

    Hi Doug,
    I am a friend of your mama’s. I saw this on f/book.
    I was diagnosed with U/Colitis in 94. I went through 2 hospitalizations in a 2 month period. Each time I felt very sick and had 101 and 102 temp. I got IV steroids for 2-3 days at a time in a hospital setting and it was like going to hell and back.
    It took me 6 months of Prednisone (which shrinks the swollen tissues). made me crazy and I put on a lot of weight. I take a drug called Asacol 2 pills 2 x a day. I get a colonoscopy every 2 years( since having this disorder makes one more prone to get colon cancer, but my doctor told me not to worry that they could just snip it out and said the people who die from colon cancer are usually the people who never get a colonscopy). I have been in remission since prob 95.
    You might start sleeping better once you get off the Prednisone. That drug wires me. Maybe try taking it in the morning , but not at bedtime if at all possibly.
    The only thing that I question now is what happens if the drug Asacol that I take ever day stops working. I will cross that bridge when I come to it.
    I was also told by my gastroenterologist that what I ate made no difference. Although fried foods are bad for our colons. I was told that this is a disease of the autoimmune system. I am a retired LPN (practical nurse) and I still don’t understand it completely. I now know that it is something I can live with.
    I went through the frequent loose crampy stools, but that got better for me. Hope it gets better for you. I have not heard of the book you mentioned, but I might check it out.
    When I 1st got diagnosed I had just gone through a very stressful situation that threw me into a temporary depression. and I look back now and I wish I had sought some help that maybe would have prevented me from developing this. Hope this helps. I went crazy for answers when I 1st got this. I use Web MD a lot now for my medical questions. also Mayo Clinic and Harvard each has a nice web site that you can look up stuff. Email anytime with any questions you might have.
    Good luck and God bless.

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  3. Doug Hagler Avatar
    Doug Hagler

    Thank you for your comment and well wishes, Gail. I’m glad to hear you’re doing ok now. It’s so helpful to hear from you and from others a time line of treatment after diagnosis. One of the things that has frustrated me is not knowing how long to stick with a particular dosage before letting my doctor know it’s not working. What a frustrating disease this is turning out to be!

    The Specific Carbohydrate Diet that’s in Breaking the Vicious Cycle is supposed to reset the flora (bacteria) in your gut. It takes up to two years for this to happen, and it basically means cutting out food that feeds the competing bad bacteria–sugars and starches. For some reason natural sugars from fruits are okay. But it’s a pretty restrictive diet.

    While it may relieve symptoms in the beginning, that’s almost just a side-effect. The book suggests giving it a try for one month after symptoms have decreased and deciding then to continue or not.

    I’m going to do it. Even if it doesn’t work, it’s an extremely healthy diet, even though I’m going to miss some of the foods I won’t be able to eat (bread! pasta! but I get all the cheese I want. go figure).

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  4. Doug Hagler Avatar
    Doug Hagler

    Here’s what my friend Jen had to say in an email about all the SCD diet:

    I really think you should try the diet. Do not be discouraged by your doctors reaction. My doctor is one of the only ones who tells his patients about this diet. These doctors are taught in med school only to follow treatments that have been studied extensively. Nobody is ever going to do a study on this diet because the studies are financed by drug companies who stand to make money off of the drug. They won’t fund something that has no payoff (other than helping the patient get back to normal). My doc is one of the top GI doctors out here and has studied diet and digestive diseases. The great thing about the diet is that you can try it for a month or two, and she says if you notice no progress or changes, then you know it probably isn’t going to work for you and can stop doing it. That two months will go by really fast, and hopefully it will work and make you feel better. If not, you have nothing to lose. It’s not bad for you and won’t harm you in any way, and you do the diet in conjunction with whatever meds you are taking.

    I have been on the diet for only three weeks and have already noticed a difference. I have not had a painful ucler in my mouth since about three days after I started the diet. This is the longest I have gone without a sore in my mouth for a year and a half. The only other time I went that long without them was when I was on the prednisone. (Oh, BTW, the Prednisone also made me irritable and mean, so I can relate! Joe called it my roid rage. 🙂 ) I also have no more blood in my stools and only have to make 1-2 trips to the bathroom per day, which is amazing for me. I have also noticed that there is not that urgency like there was before. I would sometimes end up crying if Joe was in the bathroom and couldn’t get out fast enough. We only have one bathroom, not good for people with UC! 🙂 I have not had an urgent moment like that for two weeks. I don’t know if it will work for you or not, but I think it is most definitely worth a try. You don’t want to get to the point where your doctor is telling you they need to remove your colon and then it’s too late to even try.

    I ordered three cookbooks for the SCD, and all of them have really delicious recipes. They are: “Recipes for the Specific Carbohydrate Diet”, by Raman Prasad. “Eat Well Feel Well”, by Kendall Conrad. And “Lucy’s Specific Carbohydrate Diet Cookbook”, by Lucy Rosset. The first two can be ordered on Amazon. The third one is on the breaking the vicious cycle website. Totally worth it because the better tasting the food is the easier it will be to stay on it, though for me, feeling so much better is enough. I had two other GI docs before this one and they all told me the same thing your doctor told you, diet has nothing to do with it. It really is not true. I believe this wholeheartedly.
    I just can’t stand the thought of you suffering like this if the diet might work for you, so please give it a try. If you need any advice, pep talks, etc. don’t hesitate to call me or write or text. I know how frustrating it can be. Oh, one more food thing, if you do the diet order the 5 lb. bag of Almond Flour from the website they link you to at breakingtheviciouscycle.info. It’s much easier than making your own nut flour, and a lot less messy. Cuts preparation time also.
    Good luck, and let me know how it goes if you do try it. YOU CAN DO IT!! 🙂

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  5. Hope « icanhasgrace Avatar
    Hope « icanhasgrace

    […] hanging around the house longer than usual this morning, waiting for my bowels to calm down long enough to allow me to get to work. That sounds grim, doesn’t it? Actually, […]

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