The Specific Carbohydrate Diet
Frequently Asked Questions
The decision to have surgery is a very personal one, requiring extraordinarily careful consideration and a great deal of input from your doctor(s). Unfortunately, it's not always the 'cure' we wish for. An SCD list-member kindly gave permission me to post the following, in which she describes her bowel resections surgery:
I've recently had a bowel resection ( 1 month ago) because I had a stricture so severe that I had been on a liquid diet for about 4 months and was losing weight like crazy. All of the X-rays and test revealed that the only opening from the stricture was at best about a hairline opening and I was always in pain even from ingesting too much liquid at one time. A short period on prednisone offered some relief, but no change in the stricture. There was too much scar tissue built up. My stricture was located approximately in the middle of my transversal colon, as well, the whole ascending colon and part of the ileum was badly inflammed by Crohn's from not being properly diagnosed with CD about 2-3 years ago until I had a serious flare up in March of this year.
The result was a bowel resection, where the surgeon in his good intention and expert opinion decided to remove ALL evident diseased sections of my intestines, not only the stricture part. The result is that half of my colon and a portion of my ileum were removed. Needless to say, knowing what I know now, I feel violated but I'm glad and fortunate I didn't wake up with a colostomy.
Everything happened so quickly from confirmed diagnosis and scheduling for surgery. I didn't find out about SCD until after the surgery because I couldn't accept that diet had nothing to do with ill bowels. I had, though, gotten specific and categoric assurances by all the GIs I saw and the surgeon that "diet has nothing to do with it" (we should definitely invent a song about that one people!). I needed relief and had no other choice at the time, so I went ahead with the operation.
Knowing what I know now, I would have probably opted for the removal of the stricture only, followed with a course of medication with the SCD diet to deal with the rest. I do NOT feel that I was properly informed of my options, I had no option, the surgeon decided for me. I was still then in the "old fashioned" zone that you don't question the experts, til now ... No sense chastising myself for not being more agressive ... I didn't have the knowledge or the strength.
Okay, setting the history of my resection aside, I am feeling great and my bowels have recommenced their usual business. I am very lucky that I have "trophies" starting about 3 weeks ago but then again, this could be attributed to being on the SCD soon after my operation. The surgeon told me that people with resections normally maintain some D, and visit the bathroom 3-4 times daily. My surgeon prescribed Questran to regularize my bowels but I haven't used it or needed it. I'm on the SCD to maintain remission and to avoid further surgeries. I go to the bathroom once or twice daily at the most and have formed stools. I intend to stay on the SCD diet possible forever as one surgery increases the risk of further surgeries, it is not a cure.
I thought you might benefit from other's experiences and you should be skeptical of surgical intervention unless you really trust your surgeon and feel fully informed of all your options with some assurance that if you opt for surgery, you can also decide what gets removed and what doesn't. My surgeon also informed me that I will likely require further surgeries in the future ... I want to prove him wrong, very, very badly. So I'm taking control now.
We each have to decide what is best for us but having information from others who have been in the same boat is so helpful to us, the doctors, I find, don't have enough time to discuss everything with us and educate us about our disease. I'm not even convinced that they know what to do with IBDers yet, other than medicate and operate. This listsv has been a godsend and I will be forever thankful for finding it and the people who share so generously. I'm learning so much I hardly have time to absorb it all but without it I'd be a bit more lost on the SCD and a little less encouraged. Thank you everyone.
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