Help needed not being taken seriously

Posted by szelisk @szelisk, May 21 8:32am

For the past 4 years, my GI system has been getting worse. I have Celiac and Microscopic Colitis, both confirmed by biopsy. Even though all the blood test show I have not been having gluten. My last colonoscopy showed a round lession (looks like a rug burn). Taking the prep I felt like I poured alcohol on an open wound. I would like to visit Mayo, unfortunately, many MD's don't believe how bad it is. When you are afraid to eat or drink water because you will have explosive diarrhea. Below is the lession no one can identify.

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I am going to Mayo in July, soonest tgey can take me. that photo looks awful. How can Drs not take you seriously!?! What did they say about it!?!?!
I have microscopic collitis, diveerticulosis, and had part of my colon surgically removed in February due to a cancer (NET). I also diagnosed with A&B toxin C Diff. I got better after colon surgery but right back severe constant abdominal pain, diahrrea, and cramping, lethargy 3 months later (now). My medical team is in Arizona, and I am stuck with country medicine in Northern Minnesota. No Gastroenterologist or Oncologist within 70 miles, and even they are booked out until July August. I called the ER the other night-she said to look for a nurse line # on my insuraance card. There was none. I totally get what you are going through. It sucks. And I am sorry. Where do u live?

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@szelisk

Unfortunately, the GI only did a colonscopy and couldn't get any biopsy's for the small bowel. (They had a hard time getting into the small portion they did). Current plan (according to GI) wait until it get's really bad again and then do another Endoscopy and Colonscopy. I've asked my Cardiologist for a referral to another GI MD. I found out today my potassium level's are low again (so I'm not absorbing again). Also, my BP is very low (100/54) so I'm waiting to hear the next steps. Thank you for caring!

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just my opinion but a much better trained Gi might help. my GI explained there are specialized Gi’s who have 3-4 years more training in endoscopy (and ultrasound endoscopy) than most Gi’s. i hope you find a superb and compassionate GI dr soon

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@rozy288

Well we have diagnosed issues but the fact no one and nothing helps us is the most frustrating part .
It gets to our metal health . How can it not ?

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The sad part is (from my experiences) many MD's just put us down has hypochondriac's. As for me, my hubby tells me if it's something not rare I never have anything wrong. About 6 years ago, I lucky had a gallbladder attack and hubby took me to the ER. My daughter who is a nurse came with and told the ER MD to take what ever pain level I give and add 2. Thankfully, this MD took me seriously and did a CT scan. There they found my uterus was enlarged, but still tried to blame it on my heart. After the cath they realized my heart was found. Later it turned out my gallbladder was basically dead and my uterus was the size of a large eggplant with a tumor the size of a small eggplant. I ended up with what they refer to as a "STUMP" tumor. A suspicious tumor with unknown malignant potential. My understanding was there was several different cancer cells but no pattern. After my hysterectomy, I asked my GI and family doctor for some pain meds to relieve my gallbladder pain. All I was told was to take ibuprofens. When I finally had my gallbladder removed and they saw the report/pathology. The first thing that came out of their mouths was, "You must of been in so much pain." Really...

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The lesion looks like a large necrotic (dead tissue) ulcer. I assume this was biopsied. I would get a copy of the biopsy report. Necrotic lesions in GI tract can be caused by small blood clots or vasculitis (inflammation of blood vessels). There are blood tests for both. You should have a hypercoagulation panel or at least anticardiolipin antibodies and an ANCA blood test. I would bet your biopsy result would have some clues. Unfortunately you might have to be the main investigator until you get to the proper Dr and diagnosis.

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@slkanowitz

The lesion looks like a large necrotic (dead tissue) ulcer. I assume this was biopsied. I would get a copy of the biopsy report. Necrotic lesions in GI tract can be caused by small blood clots or vasculitis (inflammation of blood vessels). There are blood tests for both. You should have a hypercoagulation panel or at least anticardiolipin antibodies and an ANCA blood test. I would bet your biopsy result would have some clues. Unfortunately you might have to be the main investigator until you get to the proper Dr and diagnosis.

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Unfortunately, the biopsy was "inconclusive". I agree, I have been doing research on this and need to bite the bullet. I'm waiting for a referral to another GI (my cardiologist who is absolutely awesome, basically told me my current GI is lazy). Hoping to have an answer within the next couple of months.

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@shelleyw

95% of the time I am 100% gluten free... but if I eat gluten I will not have any of the normal bad symptoms that usually occur for celiac disease. Yet I am definitely a celiac patient, with severe intestinal damage and my blood tests and I have the DNA alleles for celiac.

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I learned, from my doctor and other sources, that regardless of whatever symptoms celiac presents for any of us, what we eat may not make us sick, but our body knows if we eat gluten and responds. Sometimes it shows years later, if not sooner.

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@joy4trees

I learned, from my doctor and other sources, that regardless of whatever symptoms celiac presents for any of us, what we eat may not make us sick, but our body knows if we eat gluten and responds. Sometimes it shows years later, if not sooner.

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So true! For me, I became more sensitive and have reactions quicker when I have gluten since I've eliminated it from my diet.

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@mimisayhi

I am going to Mayo in July, soonest tgey can take me. that photo looks awful. How can Drs not take you seriously!?! What did they say about it!?!?!
I have microscopic collitis, diveerticulosis, and had part of my colon surgically removed in February due to a cancer (NET). I also diagnosed with A&B toxin C Diff. I got better after colon surgery but right back severe constant abdominal pain, diahrrea, and cramping, lethargy 3 months later (now). My medical team is in Arizona, and I am stuck with country medicine in Northern Minnesota. No Gastroenterologist or Oncologist within 70 miles, and even they are booked out until July August. I called the ER the other night-she said to look for a nurse line # on my insuraance card. There was none. I totally get what you are going through. It sucks. And I am sorry. Where do u live?

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I live outside of Chicago and work for a Medical School. The sad part is the hospitals entire GI team walked out due to no pay raise for 3 years. Now we have a new group, but nothing to write home about.

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hey every body, I'm going to start CA or maybe GA, Gluten's anonymous, "I'm powerless over gluten..and it fucked me up, big time!" so well, it's a lot like alcoholism, a disease, and a lot of folks simply don't get that the only way out to win is to surrender to that one fact, a script of "no gluten" just like "no booze" but the biggest problem is my early morning AA meeting, cause they got this table, and some guy usually stops at "daylight donuts" and brings in this glazed puppies that just sit there and ooze fat and sugar and GLUTEN, but glisten in the morning sun and say, "eat me with your cup of coffee, cause you'll feel good and better" ya know just like booze did, till it didn't.

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@dragonfly123

hey every body, I'm going to start CA or maybe GA, Gluten's anonymous, "I'm powerless over gluten..and it fucked me up, big time!" so well, it's a lot like alcoholism, a disease, and a lot of folks simply don't get that the only way out to win is to surrender to that one fact, a script of "no gluten" just like "no booze" but the biggest problem is my early morning AA meeting, cause they got this table, and some guy usually stops at "daylight donuts" and brings in this glazed puppies that just sit there and ooze fat and sugar and GLUTEN, but glisten in the morning sun and say, "eat me with your cup of coffee, cause you'll feel good and better" ya know just like booze did, till it didn't.

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Unfortunately, so true!

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