Hello all,
I need some advice from this wonderful group of people!
I was diagnosed with CC in 2018. I eliminated many irritants from my diet and achieved remission for some time. I had actually reintroduced some foods that had bothered me and I was doing very well. My GI had initially wanted me on steroids, I refused them and I managed my symptoms by diet change.
However, in 2019 I started having issues again, which became increasingly worse. My GI doctor thought I had C-DIFF and I was pumped full of Vancomycin antibiotics. An infectious disease doctor confirmed I was a C-DIFF carrier but had no active toxins and suspected something else. (Oddly, the antibiotics stopped my stomach issues within days the first time and within a week on my second round. I never felt better! It was great! But, when I stopped them...bad times.)
I had another colonoscopy last week and was diagnosed with LC this time. My doctor wants me to start Budesonide but, I have actually been feeling better, though my diet is quite limited.
I know everyone in this forum recommends stopping gluten but...processed carbs and animal protein were the only things that stopped my diarrhea. I could not even have rice, bananas or potatoes. (I went gluten free at one point for several months and it made no difference.)
I am dairy free but in the past tolerated yogurt quite well and I suspect the probiotics in it benefited me. Now, it makes me gassy.
Now, I can tolerate some potatoes, and most meats but I am getting no other fruits or vegetables in my diet. I will have chicken soup but sometimes, even the mushy carrots don’t seem to digest and I see them later...
I have managed to reduce my diarrhea down from 10 times a day to mostly solid to loose stools varying from 2-5 times a day. The horrible abdominal pain seems to have subsided also.
So...should I take the Budesonide? Will my stomach start digesting food? Will this help me get “over the hump” and into to a more stable remission? It has been a hell-ride since last July (with periods of feeling better while on massive doses of antibiotics for the suspected C-DIfF)
I am doing much better now than even a few weeks ago but, I can’t just eat carbs and protein the rest of my life. I have been eating salmon, chicken, potatoes, turkey, bison meat, toast, chicken soup and sometimes rice. Should I continue down this road and hope my stomach continues to improve or consider the meds?
I am nervous because I also have an anxiety and depression disorder. I’m not sure how this drug will impact my mental health. My GI doctor assured me it is only absorbed in the digestive tract and side effects should be minimal.
Thanks for listening to my story. Thanks for any input.
Kind Regards, Heather
Should I take the Budesonide?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Heather,
Welcome to the group. If you want temporary relief, take the budesonide. It helps most people in a few days to a couple of weeks. If you want permanent relief, (in addition to the temporary relief) order the EnteroLab stool tests to find out exactly which foods are causing you to react. Your doctor is probably not going to allow you to take the budesonide for more than a few months, and 85 % of patients relapse after that. If you choose to order the tests, do it now, because after you take budesonide for a while, the test results may become less effective and eventually they will begin to provide false negative results as your immune system becomes less effective.
I note that when I was first attempting to track down my food sensitivities I kept a food/reaction journal for several years, and I couldn't tell which foods were problems until my system was clear of gluten for many months. As long as gluten was still dominating my system, I seemed to react to anything and everything at random. After I was clear of gluten long enough (so that my immune system antibody production had declined somewhat), then I was able to detect my other food sensitivities accurately.
Don't let gluten make a fool of you. Our brains crave the gluteomorphins (a form of opioids) in gluten, and eventually, some of us even develop a tolerance to gluten, despite the fact that our immune system continues to produce antibodies against it. Gluten is a very insidious foe. It's very adept at making us think that it's our friend, when in fact, it's our worst enemy.
I hope this helps.
Tex
Welcome to the group. If you want temporary relief, take the budesonide. It helps most people in a few days to a couple of weeks. If you want permanent relief, (in addition to the temporary relief) order the EnteroLab stool tests to find out exactly which foods are causing you to react. Your doctor is probably not going to allow you to take the budesonide for more than a few months, and 85 % of patients relapse after that. If you choose to order the tests, do it now, because after you take budesonide for a while, the test results may become less effective and eventually they will begin to provide false negative results as your immune system becomes less effective.
I note that when I was first attempting to track down my food sensitivities I kept a food/reaction journal for several years, and I couldn't tell which foods were problems until my system was clear of gluten for many months. As long as gluten was still dominating my system, I seemed to react to anything and everything at random. After I was clear of gluten long enough (so that my immune system antibody production had declined somewhat), then I was able to detect my other food sensitivities accurately.
Don't let gluten make a fool of you. Our brains crave the gluteomorphins (a form of opioids) in gluten, and eventually, some of us even develop a tolerance to gluten, despite the fact that our immune system continues to produce antibodies against it. Gluten is a very insidious foe. It's very adept at making us think that it's our friend, when in fact, it's our worst enemy.
I hope this helps.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,
Thanks for the welcome and your advice. Looks like I will go back to the gluten free life again! I appreciate how supportive this forum is and how knowledgeable and well researched the members are. It’s been a great resource for me and I’ve tried lots of things recommended. I’ll start that medicine and work on diet changes again. I never realized how bad gluten can be. Yikes. I’ll also check out the food sensitivities. Lots of work to do it seems but hopefully worth it. Thanks again so much!
Heather
Thanks for the welcome and your advice. Looks like I will go back to the gluten free life again! I appreciate how supportive this forum is and how knowledgeable and well researched the members are. It’s been a great resource for me and I’ve tried lots of things recommended. I’ll start that medicine and work on diet changes again. I never realized how bad gluten can be. Yikes. I’ll also check out the food sensitivities. Lots of work to do it seems but hopefully worth it. Thanks again so much!
Heather