Although it has been some time since I have posted here, I come to this forum almost daily and follow threads on the message board. I am so grateful that this group exists. Thank you to all who invest their knowledge and time to help others like me.
I am happy to say, I am a lot better. Things are not perfect or exactly Norman, but my life is much more tolerable and I am so grateful. I was on Budesonide starting in September when I was diagnosed with MCC. Unfortunately, it didn't really work for me, and so my GI gave me a course of prednisone. I finished that, including the taper, but it also did not have the desired effect. So, I went back to the budesonide, because I had some left that I had not taken and because it was at least some better than nothing. I gradually tapered that down, and stopped altogether sometime in January. By this time, I quit calling my GI, because the next step from her was ever more powerful/toxic drugs, and she also told me diet had nothing to do with this.
At about the same time my daughter-in-law's father who is a FP took pity on me and my weight loss and encouraged me to try Bentyl, which he ordered. That has actually helped me quite a bit. I take it sort of as needed now, but when I am working, I take it and it has enabled me to get to work without accident:) Throughout all this, I have been GF,SF,DF, since I found this forum and Egg, rice and tuna free since Enterolab testing. I do believe that it is the dietary changes that have made a difference. I have experimented with avoiding high histamine foods and I do take zyrtec daily, but that didn't seem to make a difference. I have added in some fresh fruit, and more vegetables, and see no difference in my gut. I no longer have to go multiple times during the night, and maybe 2-3 times perday. I can live like this. I have a bit more energy than initially, but the joint pain that the steroids masked is with me. (I guess the steroids did help me:/)
I think that there is still inflammation going on because of the thin nature of the stool. The problem is, I have lost some of the urgency to sleuth out the culprits because life is more or less tolerable. I hope to muster that motivation though, because the effects of inflammation don't take a break, I fear. I'm open to suggestions.
Once again, thank you to all, especially Tex. I truly do not know where I would be without you. And to all who are still in the WD stage, don't give up. I felt like it would never change despite week after week of dramatic dietary changes and no discernable difference. Then one morning, I realized I slept through the night! So progress is possible...
Hugs!
Progress
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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darlagroat
- Little Blue Penguin
- Posts: 31
- Joined: Thu Sep 12, 2013 5:04 pm
- Location: California
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Hi Darla,
Glad to hear that you're doing so much better. Now it could be a matter of time, sticking with the diet, and managing stress to gradually improve. I actually got on a sleep medicine because I wasn't sleeping, and when I started getting 8 hours every night things improved dramatically.
I think it takes a long time for the GI tract to heal. It sounds like you're on the right track.
Take care,
Nancy
Glad to hear that you're doing so much better. Now it could be a matter of time, sticking with the diet, and managing stress to gradually improve. I actually got on a sleep medicine because I wasn't sleeping, and when I started getting 8 hours every night things improved dramatically.
I think it takes a long time for the GI tract to heal. It sounds like you're on the right track.
Take care,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Congratulations!!
and thanks for sharing the awesome news of your progress.
nothing wrong with enjoying 'the new normal' for a while. Make the most of the summer now that you have things reasonably under control.
I note that you joined in September 2013, so it has taken 8 months to get this far, which is close to average.
keep enjoying your new normal
hugs
and thanks for sharing the awesome news of your progress.
nothing wrong with enjoying 'the new normal' for a while. Make the most of the summer now that you have things reasonably under control.
I note that you joined in September 2013, so it has taken 8 months to get this far, which is close to average.
keep enjoying your new normal
hugs
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Darla,
It's good to see that you're doing so much better. As Nancy mentioned, you may just need more healing time. It appears though that something may be sneaking into your diet and causing continuing symptoms. The joint pains suggest that small amounts of gluten may be somehow getting into your diet. Of course other foods (or even a medication) might be causing the joint pain, but the most likely suspect is traces of gluten in something that you are eating.
Sometimes we have to do a lot of detective work to get rid of those last symptoms.
Congratulations on your improvement, and thanks for posting an update.
Tex
It's good to see that you're doing so much better. As Nancy mentioned, you may just need more healing time. It appears though that something may be sneaking into your diet and causing continuing symptoms. The joint pains suggest that small amounts of gluten may be somehow getting into your diet. Of course other foods (or even a medication) might be causing the joint pain, but the most likely suspect is traces of gluten in something that you are eating.
Sometimes we have to do a lot of detective work to get rid of those last symptoms.
Congratulations on your improvement, and thanks for posting an update.
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.