New - Ok to have joined youir community? Questions/Guidance

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Allie
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Joined: Sat Feb 20, 2016 5:30 pm

Post by Allie »

Hi all. Wanted to update you. Have been dx with chronic pancreatitis. Was admitted to the hospital for 2 days following EUS of pancreas for pain control. The entire pancreas is involved and I've begun Creon. It's helping immensely with that pain. I say THAT pain because pain persisted and I continued to lose weight. Also had a spike of glucose in the diabetic range but have been prediabetic for a long time.

The vascular study of the bowel came back abnormal. I have a condition called MALS. I'm being referred to a vascular surgeon for that to be resolved. That's what's causing the other pain. It's pretty severe in my case and may also explain the severity of my POTS. My CD is still progressing per biopsy for no known reason so I will be pursuing that after we take care of the vascular surgery which is a higher priority. I also have stomach atrophy and they want to place a jejunum tube for weight gain. They also consider this a higher priority as my weight has reached a critical point. And I have to have the hysterectomy next week due to abnormal items there. So we're growing the issues.

I'm grateful to be getting answers, treatment options despite it being so many surgeries (some higher risk) but I'll take it. At least we're moving forward. We'll deal with possible refractory CD when I can eat again and go from there. Thanks so much for the support! Don't forget to ask about MALS if you find yourselves stuck. Blessings!
Allie
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tex
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Post by tex »

Whoa! While pancreatitis is not surprising (for MC patients, or refractory CD patients), the MALs diagnosis certainly explains your pain and your inability to eat enough and to gain weight. That surgery to correct the MALS issue should resolve many/most of the problems that you have been experiencing.

Please don't assume that you have diabetes just because you have occasional glucose spikes. I have had that (and various other symptoms of diabetes) happen to me many times when I was having digestive problems and/or other adverse health events , and I am definitely not diabetic. IOW that symptom can be caused by various other acute issues, unrelated to diabetes. When the gut becomes upset, erratic test results of that type are possible/likely. And all it takes to upset the gut is stress, which can be in the form of physical, emotional, or chemical.

Refractory CD is virtually always undiagnosed MC.

Thanks for the update. Best of luck to you during your surgery and recovery, and please keep us updated.

Tex
:cowboy:

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.
Allie
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Joined: Sat Feb 20, 2016 5:30 pm

Post by Allie »

Thank you Tex! I'm not looking forward to the process of solving all these challenges but am grateful to have a roadmap of where I'm going. It's better to have some answers. The weight is becoming an issue since I'm having trouble going day to day energy wise.

I saw an endocrine specialist some years ago about the prediabetes and had an extensive work up. I will develope LADA diabetes since all my grandparents, both my parents, and so far all my older siblings have signs of it or have it. She said I'm genetically predisposed and have no way out. Lol! I'm not worried about it. I eat healthy normally and was a body builder so when I get back on track, it will be managed easily.

The road is tough but so am I. This group is awesome and they are lucky you have done such extensive work on MC. We'll see what happens once the MALS is dealt with!
:grin: :grin:
Allie
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tex
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Post by tex »

Allie wrote:She said I'm genetically predisposed and have no way out.
That's true if you do what everyone else in that situation does and follow conventional recommendations. To avoid that default outcome you have to do things differently. If you eliminate all of your food sensitivities (and especially make sure that absolutely all traces of gluten are out of your diet) and minimize carbs in your diet, you can beat it. Diabetes is driven by inflammation due to carbs in the diet. IMO diabetes is a neolithic disease, caused by the introduction of neolithic foods into the human diet, approximately 8,000–10,000 years ago.

Yes, we have to be tough to beat MC (and all the other stuff that comes with it). :thumbsup:

Tex
:cowboy:

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.
brandy
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Post by brandy »

Allie,

I think there is a book that several of the members that are predisposed genetically to diabetes like. I can't remember the name or author but perhaps someone will chime in.
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Gabes-Apg
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Post by Gabes-Apg »

Brandy i think the book you are thinking of is Bruce Lipton - biology of belief
"Our health is not controlled by genetics,” he told me in his characteristically upbeat and excited manner. “Conventional medicine is operating from an archaic view that we’re controlled by genes. This misunderstands the nature of how biology works".
https://www.brucelipton.com/resource/ar ... pigenetics

http://www.amazon.com/The-Biology-Belie ... 1401923127
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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