Would I swallow these worms? You betcha:
Man finds extreme healing eating parasitic worms – CNN.com via Man finds extreme healing eating parasitic worms – CNN.com.
When conventional treatment didn’t work this past year, I took thalidamide, a drug that is all but banned in the entire world because it causes birth defects and can cause permanent nerve damage in adults who take the drug, for a month. The side effects were horrible. (Click here to read other posts on icanhasgrace about my trouble with UC.)
I tried extremely restrictive diets. I eventually made an appointment for evaluation to have my colon removed. Then because of nothing any doctor did, I went into remission. I still have occasional issues, but I am not going to the bathroom 10-plus times a day anymore. However, every doctor assumes that it’s only a matter of time before sever symptoms return.
The doctor at the end of the CNN article who talks about how irresponsible the New York University, CNN, and the patient were to report this as news is not going to the bathroom 10 times a day or shitting in his pants at least once a week. He hasn’t suffered from “‘roid rage,” a side-effect from taking harmful steroids, which just about drove my family crazy. He isn’t looking at having to defecate attached to the side of his body, either.
I understand that there are rules to follow, and they have by-and-large served us well. But articles like this give people who are suffering hope. I hope my remission lasts a good long while, long enough for drinking worms to become more common for the treatment of ulcerative colitis.
I’ve been much, much, much improved. By the time I finally saw the new doctor at the Inflammatory Bowel Disease Center at Vanderbilt University Medical Center (I had to wait months for the appointment), I was better. Not perfect, but better. I was sleeping through the night, I had come off all the prednisone, I was taking, and I’d gained back most of the weight I had lost.
Dr. Swartz convinced me that better wasn’t good enough. He said that now was the time I should be taking lialda (I had tried it that drug before, but it had no affect), which is the long-term medication intended to bring about permanent healing. Lialda also reduces the risk of colon cancer for UC patients by fifty percent.
Dr. Swartz also said that he wanted to know as sure as he could if what I have is ulcerative colitis or Crohn’s. What brought me to his office in the first place was that things had gotten so bad I was ready for surgery. I wanted a j-pouch. Dr. Swartz said that might still be in my future, even though I was feeling much better. But only if I had UC, for sure. Surgery doesn’t help Crohn’s. To find out which I have, I’m to have another colonoscopy. I can’t start the Lilda until after the colonoscopy because if the drug starts to work, it will cause “spot” healing and the doc won’t get accurate results.
It’s strange to have so much going with this disease when I’m feeling so much better. However, Dr. Swartz said that while I am feeling much better, there is no reason why I can’t expect to eventually feel one hundred percent better. How I was feeling was so bad that I have been willing to settle for less than the best. I can see the truth in that.
Sometime soon I’m going to write about some of the things the psychologist and the dietitian, who are a part of this practice and care team, had to say.
I’m 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, it’s not too bad. The house is empty and peaceful after the frenzy of everyone getting ready to leave. I can hear the rain falling on the roof and trickling down the gutters. I hear thunder. The birds are singing.
It’s too soon to tell if the Specific Carbohydrate Diet is doing my ulcerative colitis any good. I fully believe that even if it isn’t fixing the disease, it’s a very healthy diet. It’s especially good for Frank since he has type 2 diabetes. However, I’m always SO FREAKIN’ HUNGRY!
Part of that is because I’m still on prednisone. But still, I have a hard time finding things to snack on, and stuff takes quite a bit longer to prepare than I’m used to.
And what about when I cheat? How badly does it set me back? I didn’t clear out illegal foods when I started. So until I’ve scarfed down the last of those Lil’ Debbie Oatmeal Cream Pies, a cheater I will be. I’ve already cleaned the house out of hershy’s kisses.
Physically, I’ve been running to the bathroom at night with gas, but with no real gotta-get-there emergencies. The problem is, I can’t tell the difference yet. It might be gas, or it might be explosive diarrhea. They both feel the same, so better safe than sorry. Sometimes my multiple-movements-accompanied-by-severe-cramps happen in the wee hours of the morning, and other times they occur when I’m trying to leave for work. Either way, the frequency has decreased since the first of December, even if the urgency has not. It’s my understanding that this diet should eventually help. But not if I keep cheating, of course.
…to the point of distraction. One of three things must happen:
- I’m going to have to figure out how much I need to pack in my lunch box to snack on throughout the day;
- I’m going to have to stop taking this prednisone (it can make you hungry);
- I’m going to give up this Specific Carbohydrate Diet.
I’ll add a more detailed post about how it’s going later this evening.
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.