Anyone diagnosed with pancreatic insufficiency and cc?
Anyone diagnosed with pancreatic insufficiency and cc?
This is my second post as a newbie and I’m hoping I’m doing it right! I have experienced D and various problems with it ( who knew how many ways it could show itself?!) since late Jan. of this year. I was initially diagnosed with pancreatic insufficiency through an CT scan (my pancreas was normal) and after an endoscopy & sigmoidoscopy found I had collagenous colitis. I have lost 26 pounds, been on a trial of Budesonide for a month which I tapered off after numerous side effects. I’ve never been a fan of steroids. I have found myself in the same situation as everyone with the medical communities lack of answers to the point where I was questioning what I was feeling/seeing and noticing in trying to fit myself into what I was told to do/eat/feel. So what a RELIEF to find this forum! A lot of things are making sense! I know I can be crazy sometimes but I do know what I feel and observe about myself. I have been working on my diet but realize I need to give myself longer on it before I add much. I’ve been GF, DF for years. I have noticed that I need to be Soy free and am not eating known gassy triggers. I discovered that I had been inadvertently eating gluten prior to my big flare up. I take CREON (pig digestive enzymes) now prior to every meal or snack. It can cause D, bowel issues and stomach upset. I have begun using pepto tablets and or immodium to control my system to go out and have noticed that my D has a little form and has less mucous and H20 more than the watery D I’ve gotten used to these past months. It seems like the symptoms for my pancreas issue are very similar to cc so that I am now wondering what to expect healing will look like and how to discern whether small flare type of events are due to eating more than my enzymes can handle. I’m thinking gas is a part of everyone’s life but does one get back to the usual bm’s or is that not a definite expectation? I also was understanding from what I’m reading here that CC is not necessarily part of Celiac disease but can be? Is that correct? I hope I’m making some sense here. Thank you all for the time and wisdom you share! And for the members who help make this a great place to voice our concerns. Thanks ever so much!
Re: Anyone diagnosed with pancreatic insufficiency and cc?
Hi,
it sounds like your doctor's explanation of your diagnosis was no better than the explanation offered by most of our doctors. Here's my take on this disease after studying it for 20 years, and reading all the posts on this board for over 19 years:
It appears that many of us, possibly most of us, have an inflamed pancreas after our disease develops, but we're never diagnosed with pancreatic insufficiency because in most cases, our doctors don't look for that. MC can affect every organ in the digestive tract, and a few that are not in the digestive tract (such as the brain), and it usually tends to do so, if the inflammation is allowed to continue long enough.
As the inflammation subsides, and healing progresses, the mucus slowly fades away, and if we're lucky enough to be able to keep our diet squeaky clean, our bowel habits slowly return to normal, although some of us have to settle for a modified version of "normal", depending on our diet, our lifestyle, and the details of our situation. In my opinion, small flares are usually due to food sensitivity exposures, rather than insufficient enzymes. Theoretically, at least, insufficient enzymes should only cause incompletely digested food, not watery diarrhea. In other words, eating more than your enzymes can handle may cause diarrhea, but it shouldn't cause an increase in inflammation, at least not a significant problem.
I have a different view of this disease and celiac disease than the medical community's official description. In my opinion, MC and celiac disease are not actually diseases — they're both symptoms of gluten sensitivity. Both syndromes affect both the small and large intestines, although as the medical community noticed (and based their diagnostic criteria on), celiac disease has a more pronounced effect (higher Marsh scores than MC in the small intestine).
I don't know this for a fact, but I'm guessing that celiac disease probably causes the same infusion of lymphocytes into the epithelia of the colon, as MC does, but the medical community has never noticed, because they have never looked for this pathological marker with celiac disease, so they have never noticed it. They did notice it when attempting to diagnose MC, so that's what they base their diagnostic criteria on, although the small intestine is similarly affected, the vilus damage is simply not as extensive. The intraepithelial lymphocytes, are there, however, especially at the tip of the Villi (in the small intestine), and this has been documented In numerous published research articles. Although my opinion is based on medical fact, remember, it's just my opinion.
I hope this helps,
Tex
it sounds like your doctor's explanation of your diagnosis was no better than the explanation offered by most of our doctors. Here's my take on this disease after studying it for 20 years, and reading all the posts on this board for over 19 years:
It appears that many of us, possibly most of us, have an inflamed pancreas after our disease develops, but we're never diagnosed with pancreatic insufficiency because in most cases, our doctors don't look for that. MC can affect every organ in the digestive tract, and a few that are not in the digestive tract (such as the brain), and it usually tends to do so, if the inflammation is allowed to continue long enough.
As the inflammation subsides, and healing progresses, the mucus slowly fades away, and if we're lucky enough to be able to keep our diet squeaky clean, our bowel habits slowly return to normal, although some of us have to settle for a modified version of "normal", depending on our diet, our lifestyle, and the details of our situation. In my opinion, small flares are usually due to food sensitivity exposures, rather than insufficient enzymes. Theoretically, at least, insufficient enzymes should only cause incompletely digested food, not watery diarrhea. In other words, eating more than your enzymes can handle may cause diarrhea, but it shouldn't cause an increase in inflammation, at least not a significant problem.
I have a different view of this disease and celiac disease than the medical community's official description. In my opinion, MC and celiac disease are not actually diseases — they're both symptoms of gluten sensitivity. Both syndromes affect both the small and large intestines, although as the medical community noticed (and based their diagnostic criteria on), celiac disease has a more pronounced effect (higher Marsh scores than MC in the small intestine).
I don't know this for a fact, but I'm guessing that celiac disease probably causes the same infusion of lymphocytes into the epithelia of the colon, as MC does, but the medical community has never noticed, because they have never looked for this pathological marker with celiac disease, so they have never noticed it. They did notice it when attempting to diagnose MC, so that's what they base their diagnostic criteria on, although the small intestine is similarly affected, the vilus damage is simply not as extensive. The intraepithelial lymphocytes, are there, however, especially at the tip of the Villi (in the small intestine), and this has been documented In numerous published research articles. Although my opinion is based on medical fact, remember, it's just my opinion.
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.
Re: Anyone diagnosed with pancreatic insufficiency and cc?
Hi smp, welcome to the forum! I'm so glad you found this community, it's amazing how much sense things start to make when we connect with others who understand what we're going through. I'm not a medical expert, but I can definitely relate to the frustration of dealing with pancreatic insufficiency and CC. It sounds like you're on the right track with your diet and enzyme supplements, and it's great that you're noticing some improvements. Tex's response is super helpful, as always! I think it's really interesting that he brings up the connection between gluten sensitivity and both MC and celiac disease. I've learned so much from this forum, and I'm sure you will too. Keep sharing your experiences and questions, and we'll do our best to support you on your healing journey!
Re: Anyone diagnosed with pancreatic insufficiency and cc?
Thanks so much Tex and Fred! And thanks for responding so quickly!!
Tex, what you said about the pancreas enzymes and CC makes a lot of sense to me. Maybe there is a possibility, given time and my being careful with my diet, my pancreas won’t be so inflamed and return to its job making some enzymes. Who knows, time will tell! I am looking forward to learning more as I read your books, they should arrive any day now! Thank you for staring this support/education/sharing group. Just by having a direction, a better idea of my diet plan and knowing there are others in this boat has relieved a lot of stress!
Fred-thanks so much for you support and positivity! Finding this group has made life so much easier and less lonely! Hope you are doing well with your healing. I appreciate you reaching out to me and wish you the best!
Tex, what you said about the pancreas enzymes and CC makes a lot of sense to me. Maybe there is a possibility, given time and my being careful with my diet, my pancreas won’t be so inflamed and return to its job making some enzymes. Who knows, time will tell! I am looking forward to learning more as I read your books, they should arrive any day now! Thank you for staring this support/education/sharing group. Just by having a direction, a better idea of my diet plan and knowing there are others in this boat has relieved a lot of stress!
Fred-thanks so much for you support and positivity! Finding this group has made life so much easier and less lonely! Hope you are doing well with your healing. I appreciate you reaching out to me and wish you the best!