Please hate with me if this posts more than once. I am having some difficultly posting. Learning curve!
Hi, new here. I have spent the last few days reading and counting my blessings that I found you all. After I read the same article rewritten slightly on the forth or fifth website I was pretty discouraged. Then I found this board with people with real life experience and was able to breath again.
I have tried to absorb way too much info too fast so if this first post is a bit disjointed please forgive me.
First, I have been diagnosed with what seems too be a rare form of cc. I have actual patches of non ulcerative, non bloody inflammation visible throughout my colon in addition to the mc. I was wondering if this was as unusual as it seems from what I read.
I am taking prednisone on a step down. It started with 60 mg and now is 50. Tomorrow I go to 40 and so on week by week. I am also on 4.8 gm of mesalamine once a day. They seem to be doing nothing to help. (22 bm yesterday)
I am going gluten free, sugar free and made bone broth. I order mag. spray and I am taking 50,000 units of prescription vitamin d2 weekly. 1000 mcg/ML vitamin b12 IM once a month and 800mcg of folic acid daily. I also have IV iron treatments every three months.
I was miss diagnosed with short gut a year ago but correctly diagnosed with malabsorption syndrome. I spent years with an ibsc diagnosis which I am now finding was probably in error also.
I guess the last thing I want to share for now is I am a "forced" vegetarian. I have had several stomach surgeries that have left me in able to digest meat.
All of this sounds so negative in black and white but, I truly don't feel that way. I am very relieved to have a definitive diagnosis and to find I am not alone. Any suggestions, ideas, comments are very welcome. Thank you for being here and slogging through this post. I promise to be brief in the future.
Hi,
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi
Welcome to the forum.
Not being able to digest meat may be a challenge (to get enough protein in your diet) if you are sensitive to soy (most of us are), because most people who are sensitive to soy are also sensitive to most legumes. I assume the reason why you cannot digest meat is because of damage to your parietal cells and their responsiveness to histamine. Does this rule out the use of Betaine HCL? Or is there another reason why you cannot digest meat? This is an important issue because protein is import for healing the intestines.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the forum.
Yes. It's uncommon enough to call it rare if it's really prominent. Actually, virtually all of us have patches of inflammation scattered throughout our colon and terminal ileum that can be seen by a clinician doing a colonoscopy if the doctor knows how to recognize it (it's very faint).Sunseaker wrote:First, I have been diagnosed with what seems too be a rare form of cc. I have actual patches of non ulcerative, non bloody inflammation visible throughout my colon in addition to the mc. I was wondering if this was as unusual as it seems from what I read.
Not being able to digest meat may be a challenge (to get enough protein in your diet) if you are sensitive to soy (most of us are), because most people who are sensitive to soy are also sensitive to most legumes. I assume the reason why you cannot digest meat is because of damage to your parietal cells and their responsiveness to histamine. Does this rule out the use of Betaine HCL? Or is there another reason why you cannot digest meat? This is an important issue because protein is import for healing the intestines.
Again, welcome aboard, and please feel free to ask anything.
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.
Thank you Tex!
Yes the inflammation is prominent. I have a lovely set of pictures. I am just grateful to have found a doctor willing to look past that and do the biopsies needed for a diagnosis. I had to get out of our under served medical area and go 6+ hours away to Houston but am just grateful to be able to do it.
I honestly know nothing more than meat does not digest. I know it started after 3 stomach surgeries. It is extremely painful when I eat meat and it comes back up. No one has really ever explained why and I have just excepted it as a fact. I guess it's time to understand it better. I would say from what little I do understand that your assumptions is right. I have to find out what Betaine HCL is before I can answer that question. So much to learn....
Thank you again.
Jamie
Yes the inflammation is prominent. I have a lovely set of pictures. I am just grateful to have found a doctor willing to look past that and do the biopsies needed for a diagnosis. I had to get out of our under served medical area and go 6+ hours away to Houston but am just grateful to be able to do it.
I honestly know nothing more than meat does not digest. I know it started after 3 stomach surgeries. It is extremely painful when I eat meat and it comes back up. No one has really ever explained why and I have just excepted it as a fact. I guess it's time to understand it better. I would say from what little I do understand that your assumptions is right. I have to find out what Betaine HCL is before I can answer that question. So much to learn....
Thank you again.
Jamie
Also Jamie, you would perhaps be better served taking vitamin D3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3349454/
Hi Jamie- I just want to say HI and welcome you to our family. There are many knowledgeable people here and everyone is willing to help, listen and answer questions. It sounds like you’ve already had a difficult journey, and I sincerely hope that things improve for you soon.
Feel free to ask anything.
Best wishes,
Carol
Feel free to ask anything.
Best wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou