Hi Tina,
I was diagnosed with IBS prior to being diagnosed with CD. I didn't see a doctor for my stomach issues until after college. I think it was around 2001. She was a crappy primary care physician who wanted nothing to do with a girl with a tummy ache. She told me to reduce my stress levels and stop drinking coffee. Well, since I was working full time and in grad school full time, that was really helpful advice! After my symptoms got REALLY bad, she finally agreed to do a colonoscopy to rule out other problems, but she didn't bother to go all the way through my intestine. She went up the left side of the colon and accross the transverse, but did not go down. She saw no abnormalities and low and behold I was diagnosed with IBS, at some point in 2002. I think it was the year after that that I found this sight, but I didn't stat to actually post until much later. I started on the diet though, and it did help to some extent, until I got a stomuch bug and everything went to into a downward spiral. I ended up the sickest I have ever been in my life. I basically stopped digesting my food and dropped from about 138 pounds down to about 105 and I'm 5 foot 7.5! I also developed an abscess. I remember posting about that once and I don't want to go into the details - it was gross! When my doctor would still do nothing about I finally managed to see someone else who was flabergasted that I had not yet received another diagnosis. She was almost certain I had CD because of the absess and my other symptoms (fevers, rapid weight loss, endless diahrea, you know the story) but she could not diagnos it with colonoscopy until after treating the absess. That involved three surgeries. A few months after it healed, she referred me to a good GI specialist who did another more thorough colonoscopy. He found low grade inflamation throughout my large intestine and mid-grade inflamation in the illeum. The illeum is the most common site for CD problems. I was diagnosed in November 2004.
You asked about my medications. I currently take 4 grams daily Pentasa, 100 mg daily Imuran, weekly one pill of dyflucan, monthly B 12 shots and perscription strength Zantac as needed. I also take lots of tylenol for bone and muscle pain, and I plan to talk to the doctor soon about getting some codein for that becasue the tylenol's not hacking it!
I feel much better on the meds than I would off them. I know my diet is more varried than many people on this site. I can have salad now and again (although not often) and I can also have whole wheat bread and, in moderation, butter. I cannot have caffein, it is the enemy. I also can't have carbonated bevs and I have to be careful with alcohol. I can't have potato skins, popcorn, nuts, red meat, beans or high fat foods, so in some ways lots of the diet stuff still overlaps. If I'm careful with my foods, I do pretty well. I'll end up with unexplainable D, maybe 2 or 3 times a week, but it's not explosive D or liquid, just kind of mush (sorry if TMI!) and I have pain in my stomach on a regular basis, but it's usually not bad pain.
This is a marked improvement from where I was prior to meds. Most specifically prior to imuran. Imuran is an immunosuppressant. In the beginning it made me dizzy, but once we tweaked the dose enough, I adjusted and I have no problems with it now. The weekly dyflucan pills are a product of imuran though. I got yeast infections because my imune system is lowered. Dyflucan prevents them. I do bruise easily and my doctor says it's from the imuran. My doctor suspects that my illeum is still somewhat inflamed because I'm not absorbing B12, hence the shots, but the shots are wonderful and easy - no side effects at all. My weight goes up and down. I havn't gone below 120 since I was on steroids (off them now for almost 6 months – thank God!), but it's flowndered between 120 to 125. Since the horrible surgeries for the abscess I have only been hospitalized once briefly. I had an obstruction alittle over a year ago. It cleared on its own with lots of fluid intake. I was only in for 1.5 days (thank goodness - hate being in the hospital)!!!
So, knock on wood, it has been over a year now since I was hospitalized! I see my doctors about once a month. I have 2 great GI specialists. One is the gastro-enterologist and one is a colo-rectal surgeon. I also have a good primary care physician and a good orthopedic doctor. Doctor hunting is important. Meds are important. I take my medicine religiously!
This is alot to take in Tina, I think you need to slow down and try not to get ahead of yourself. Do you know why it was that the doctor said 50/50? That's a high chance if it's just based on a sed rate if you ask me. Maybe he has something else he's thinking about. But either way, you must know there's lots of support out there and you are NOT alone! The treatments that are available today are SO much more advance than they were even 10 years ago. Also,if you do have CD, it sounds like you may already be in remission, or close to it, and I've heard that maintaining remission is much easier than achieving it from when you are sick. Did you mention the arthritic pains to your doctor? That may be one reason why he is thinking CD. But either way, try not to stress until you know. For now, you can only continue to do what you have been doing, since you know this has helped thus far. I remember when you were much sicker and you've done so much to help yourself that things really have gotten better. There's to encourage you that it can stay better regardless of what diagnosis a doctor plops in your lap.
Keep us updated Tina, and again, I know you will get through this.
Min
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