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So sad Today
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
So sad Today
I am feeling horrible today
Hi Lisa, I'm sorry things are still feeling rough. One thing I hope you can do is try to believe that things will get better because they will if you hang in there with diet changes and the entocort. You're feeling emotionally and physically fatigued right now which makes you vulnerable to feelings of despair and hopelessness. But don't believe it! I've heard a prominent neurologist say don't believe everything you think.
I have had to fight my way out of the place you are in as has everyone else on this board and I know somedays you just don't feel up to it. I was diagonosed 2 years ago August after spending a year in hell trying to figure out why I was falling apart. At first it was all attributed to thyroid problems, very low vit. D, and wrong meds. I was just lucky that I happened to be scheduled for a colonoscopy and mentioned to the GI (as I was being rolled in) that I had bad D which they thought was a side effect of thyroid meds. He took biopisies and found the mc. That was the easy part! He put me on Asacol and told me I would be fine in a few weeks and it was no big deal. I think that's why it took me a while to find this board, because I didn't have a clue what I was really dealing with. I just got sicker and sicker on the Asacol (which I found out has lactose in it from this board-found out I'm dairy intolerant later) Went back to him a few months later, was put on the 8-week Pepto treatment which did not help, and finally entocort.
I had to take medical leave from my teaching job to cope with everything. I found this board which was my "miracle" because they have led me through the journey and they are the reason I did not fear entocort and they are the only ones who ever told me about the importance of diet. I did the Enterolab testing and was so shocked to find I was sensitive to gluten, dairy, soy, eggs, and yeast.
With all this information I was finally able to fight the fight the right way for me. As I mentioned, I was on entocort for 8 months the first time round and that was not a smooth linear experience. You will have lots of ups and downs as you heal and work your way through. Gurgling was a major part of my life and still is sometimes depending on what I eat. I kept and still keep a heating pad by my bed and often went to sleep with the heating pad on my tummy. I still use it when I eat something I shouldn't by accident and it helps me feel better and comforts me. After going off entocort a few months, I had a flare a year ago and I think it started with the Thanksgiving turkey combined with a virus. You said you ate turkey yesterday-it could have been injected with soy or something else you're sensitive to. I bought a Honeysuckle White this year per Gloria's advice and feel good today, so I'm sticking with that brand. Organic would probably be the best choice-anyone eat an organic turkey yesterday? My flare last year worsened until I went to my pcp in Jan. She put me on a low dose of prednisone for a week and I shifted back to the entocort. I stayed on it for 5 months and tapered off. I have always had to be vigilant about my diet even on entocort. My body does not allow any cheating. I read on a post the other day that someone commented that most of us seem to sail through this and handle it well, well that's just not true. I know I've cried buckets and wanted to give up (but what's the alternative?) at times, but I've learned that it is the hard work that you put into this that brings you out of it. The emotional support of this board is invaluable and will get you through the tough times. The advice is better than any you will get in a medical setting. I hope you can rest your body and your mind for while and examine where you can simplify your life. Keep your diet simple and clean right now-don't eat anything processed. Meditate, pray, do what your spirit needs. Your best ally right now is hope and there is plenty of it here. I have been as desperate as you at one point and I know you can find your way through. I hope you can have a better day and know we are all here, Love JoAnn
I have had to fight my way out of the place you are in as has everyone else on this board and I know somedays you just don't feel up to it. I was diagonosed 2 years ago August after spending a year in hell trying to figure out why I was falling apart. At first it was all attributed to thyroid problems, very low vit. D, and wrong meds. I was just lucky that I happened to be scheduled for a colonoscopy and mentioned to the GI (as I was being rolled in) that I had bad D which they thought was a side effect of thyroid meds. He took biopisies and found the mc. That was the easy part! He put me on Asacol and told me I would be fine in a few weeks and it was no big deal. I think that's why it took me a while to find this board, because I didn't have a clue what I was really dealing with. I just got sicker and sicker on the Asacol (which I found out has lactose in it from this board-found out I'm dairy intolerant later) Went back to him a few months later, was put on the 8-week Pepto treatment which did not help, and finally entocort.
I had to take medical leave from my teaching job to cope with everything. I found this board which was my "miracle" because they have led me through the journey and they are the reason I did not fear entocort and they are the only ones who ever told me about the importance of diet. I did the Enterolab testing and was so shocked to find I was sensitive to gluten, dairy, soy, eggs, and yeast.
With all this information I was finally able to fight the fight the right way for me. As I mentioned, I was on entocort for 8 months the first time round and that was not a smooth linear experience. You will have lots of ups and downs as you heal and work your way through. Gurgling was a major part of my life and still is sometimes depending on what I eat. I kept and still keep a heating pad by my bed and often went to sleep with the heating pad on my tummy. I still use it when I eat something I shouldn't by accident and it helps me feel better and comforts me. After going off entocort a few months, I had a flare a year ago and I think it started with the Thanksgiving turkey combined with a virus. You said you ate turkey yesterday-it could have been injected with soy or something else you're sensitive to. I bought a Honeysuckle White this year per Gloria's advice and feel good today, so I'm sticking with that brand. Organic would probably be the best choice-anyone eat an organic turkey yesterday? My flare last year worsened until I went to my pcp in Jan. She put me on a low dose of prednisone for a week and I shifted back to the entocort. I stayed on it for 5 months and tapered off. I have always had to be vigilant about my diet even on entocort. My body does not allow any cheating. I read on a post the other day that someone commented that most of us seem to sail through this and handle it well, well that's just not true. I know I've cried buckets and wanted to give up (but what's the alternative?) at times, but I've learned that it is the hard work that you put into this that brings you out of it. The emotional support of this board is invaluable and will get you through the tough times. The advice is better than any you will get in a medical setting. I hope you can rest your body and your mind for while and examine where you can simplify your life. Keep your diet simple and clean right now-don't eat anything processed. Meditate, pray, do what your spirit needs. Your best ally right now is hope and there is plenty of it here. I have been as desperate as you at one point and I know you can find your way through. I hope you can have a better day and know we are all here, Love JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Lisa, I'm 58 and have gone through menopause. (Another fun journey!) But I do know that I used to have bowel problems in the days right before my period. I'm just guessing here, but if I had of developed mc before menopause I'm guessing I would have had a lot of pain from both. I think you're right in suspecting that mc and your period have combined to make you very miserable. Hang in there. Get a good heating pad-it really does help with both. JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
JoAnn,JoAnn wrote:I read on a post the other day that someone commented that most of us seem to sail through this and handle it well, well that's just not true. I know I've cried buckets and wanted to give up (but what's the alternative?) at times, but I've learned that it is the hard work that you put into this that brings you out of it.
I noticed that remark, also, and I intended to comment on it, but I got sidetracked and forgot all about it. Yes, now that we are in remission, we probably sound confident, and at times we may even seem to be cavalier, about the recovery process, but back when we were going through it, we were just as anxious and concerned as those early pioneers who crossed the Rocky Mountains to find their way to the West Coast. And many times, we suffered just as much as they did, when things went wrong. As you say, hard work and dedication will get us to our destination, though, much like those pioneers who also had to deal with the unknown, while suffering from all sorts of hardships.
Excellent post - kudos to you for sharing such helpful insight.
Love,
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.
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Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Linda, love you,too so much. Thanks for always being a cheerful, optimistic influence on this board and to me personally, Love JoAnn
Lisa, I hope things look a little brighter today and that you've been able to make some decisions about your meds. Try to look at the big picture of regaining your health, but at the same time take it one day at a time making the best decisions you can to work through the day. Things will get better, Love JoAnn
Lisa, I hope things look a little brighter today and that you've been able to make some decisions about your meds. Try to look at the big picture of regaining your health, but at the same time take it one day at a time making the best decisions you can to work through the day. Things will get better, Love JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
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Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Lisa
Years ago when i had IBS, for the three days before my period i would get really bad IBS symptoms (Bloat, one minute D, next minute cramping Constipation)
I found that my body could not handle the hormone situation and the digestion situation (i also have PCOS and my bowel is adhered to one of my ovaries)
I had tried being totally natural for the hormone but found that my body could not cope wth both hormone and digestion so as the window of opportunity for children had closed for me, and i was travelling for work a fair bit, i decided that i could manage the digeston symptoms with diet and natural if I could reduce the hormone problems, I got one of the implants put in, as with the digestion issues i could not rely on absorbing oral treatments. This has worked well for me, it has removed the fluctuations and allowed me to have reasonble health with the digestion issues well until MC made its big arrival.
like things with MC, this solution may not work for everyone, but if you enduring this intensity frequently you may want to investigate some options.
I feel your pain, and your feelings of overwhelmness, feeling like you do and being in so much discomfort sucks...
it will get better, it may take a little time but hang in there
Years ago when i had IBS, for the three days before my period i would get really bad IBS symptoms (Bloat, one minute D, next minute cramping Constipation)
I found that my body could not handle the hormone situation and the digestion situation (i also have PCOS and my bowel is adhered to one of my ovaries)
I had tried being totally natural for the hormone but found that my body could not cope wth both hormone and digestion so as the window of opportunity for children had closed for me, and i was travelling for work a fair bit, i decided that i could manage the digeston symptoms with diet and natural if I could reduce the hormone problems, I got one of the implants put in, as with the digestion issues i could not rely on absorbing oral treatments. This has worked well for me, it has removed the fluctuations and allowed me to have reasonble health with the digestion issues well until MC made its big arrival.
like things with MC, this solution may not work for everyone, but if you enduring this intensity frequently you may want to investigate some options.
I feel your pain, and your feelings of overwhelmness, feeling like you do and being in so much discomfort sucks...
it will get better, it may take a little time but hang in there
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you Gabes. As I had mentioned on my first post on this website. I had tried some fertility med called clomid back in September and was on Antiobiotics and thats when this whole thing seemed to start. I was on the pill for 13 years until last December. But please private message message me and I can explain if u like. I would like to know your expertise.