Wondering About Bowel Disorders And Pots?eds

[Maxine]

We don't know to this day where my mother's cancer started, and we did not do an autopsy---(we are sorry for it now).

Her brother died weeks later with colon cancer. My brother is stage four colon cancer right now. When they found his, it had already spread though to the other side of his bowel and several lymph nodes.

The poor guy has been on chemo for three years, and the cancer has spread into his liver, and the outside of his stomach lining. He has recently had to go into the hospital for fluid bulid up in his abdomin. They ran further tests, and found the cancer has spread further into the stomach lining, and his and he has cirrhosis of the liver. He has more involvement of lymph nodes also.

On Monday I get my colonoscopy, and pray all this diverticuli is just part of the EDS or POTS. I know people with POTs can have chronic consitpation, and this could cause diverticuli. However, how could I have so many, only sparing the ascending colon? The NIH doc feels something more is going on, and suggested inflammatory bowel disease.

There's a number of things going on with my body that could cause constipation----upper spine compression, POTS, EDS, and lower spine problems. I've had problems with this since I was a child, and once when in for testing when I was 12 or 13 years old. Can you imagine the dismissiveness of docs back then? Of course they did psychological testing.

I found out in my 20s that I had a large diverticulum in small bowel---3rd and 4th portion of duodeum.

The EDs doctors I see said the EDS---(especially classical) can affect my bowel walls, but the NIH doc still felt something more is going on, and this is why I'm geting the colonoscopy----she wants a biopsy. I had a barium enema last year because of the family history of colon cancer. The general surgeon and I decided to do this test to avoid sedatiion that comes with colonoscopy. She said this test can pick up polyps, but not flat or tiny ones---but still pretty good test for cancer screening.

I do not know if my continuous gas, bloating, and abdominal discomfort which is mild comes from the large bowel of the big diverticulum in small bowel. It did show on a cat scan done before the barium enema that I had some wall thickening on the 3rd, and 4th portion of duodeum, and I assume this is in the middle right part of my gut, as this is the part that bothers me the most. It feels like something is constantly stuck there, and my bowels very rarely feel empty. It's rare for me to have a good day with my bowels--but when I do it's pure glory. The first thing I want to do is eat a normal size meal of my favorite food-------(usually speghetti with marinara sauce)----- Pasta make me miserable if I eat it when my guts aren't working right. In fact it seems like foods that are good for me make me feel miserable. I can't enjoy apples, raw vegetables, oranges, nuts, high fiber wheat breads, but yet I can eat a handful of chips with no problems-----(chips are junk food). I avoid junk food to avoid weight gain, so this means all the good foods I eat make me miserable, and there isn't a day that goes by when I'm not bloated.

I do wonder if its more of an ANS dysfunction problem with my bowels, or EDS? Do any of you have simular problems, and have EDS, POTS, and spine issues also.

My cousin has a son who has CF. She even wondered if I have mild CF in my intestines. Her son has been diagnosed since a baby, and is now 17 years old. He suffers mostly with his bowels, but has moderate lung involvement. He has been in the hospital many times with severe constipation. He has to take enzymes daily, along with his other CF meds.

This is embarrasing, but I have the most foul smelling gas---------, just like his. I feel so bad for him because as a teenager in school the kids can be cruel. This is common with CF. I have to avoid people when I have this bad gas----or hold it. This is so embarrasing--------soooo sorry. I don't remember this part as a child.

I have to go to PT right now, and dread it because I always have bloat and gas. It's hard to hold gas when your having a massage. Well, I should go--------I think I've done enough damage--------

I just pray my symptoms have NO RELATION TO CANCER. I see my brother suffering so much.

Maxine :0)

[juliegee]

Hi Maxine,

I'm so sorry you have had to watch your brother go through this. You are VERY smart to regularly check for cancer especially with your strong family history.

I've mentione to you before that I have severe bowel issues. I have a very slow small bowel and colon. At times, I take a small dose of liquid erythromycin as a GI prokinectic to help me be able to eat. It irritates my tum just a bit to make it rumble and fele hungry. I agree, it's a glorious feeling. I've been hospitalized many times with impacted bowels. I take 2-3 doses of Miralx daily RELIGIOUSLY to keep things moving. It makes me feel "normal"- for me. I have POTS, some kind of connective tissue disease, and a history of colon cancer in my family (paternal grandmother.) I've had several polyps removed.

Best of luck with your colonoscopy. I highly recommend the Half Lytley- much easier to take down (only 4 glasses.) I spread them over the whole evening- no chug-a-lugging for me.

Let us know what you learn!

Julie

[Maxine]

Thanks Julie,

My brother started another type of chemo today. He made it through the treatment, but when he got home his heart rate was 138. His poor body is so stressed. Even though the chemo didn't stop the spreading, they are hoping this other chemo will slow the progression. He didn't tolerate this type of chemo well the last time they tried it----he said he felt so cold after treatments. But right now they are willing to try anything.

They will be using citrus of magnesia for the cleansing.

I really think my EDS is causing a lot of my bowel problems. If you have ever been into the EDNF site, there a lot of people with severe or chronic constipation.

I'm so sorry you are dealing with such severe bowel problems. Miralax doesn't seem to work at all for me.

How did you tolerate the colonoscopies?

Maxine :0)

[juliegee]

Thanks Julie,

My brother started another type of chemo today. He made it through the treatment, but when he got home his heart rate was 138. His poor body is so stressed. Even though the chemo didn't stop the spreading, they are hoping this other chemo will slow the progression. He didn't tolerate this type of chemo well the last time they tried it----he said he felt so cold after treatments. But right now they are willing to try anything.

They will be using citrus of magnesia for the cleansing.

I really think my EDS is causing a lot of my bowel problems. If you have ever been into the EDNF site, there a lot of people with severe or chronic constipation.

I'm so sorry you are dealing with such severe bowel problems. Miralax doesn't seem to work at all for me.

How did you tolerate the colonoscopies?

Maxine :0)

I'll keep your brother in my prayers. Have you had a colonoscopy before? I've had several. The last was fab. The Half Lytley prep was very do-able and my GI (an older experienced fellow) injected the most glorious dose of meds into my IV line. I feel asleep and had no memories until I woke up. No pain, just a rejuvenating nap. (I did end up in the ER that night and was hospitalized off and on for a few weeks here and there afterwards. The prep set my gall bladder off into a death dance, which in turn set off the autonomic/mast cell stuff for a few months... ) I did have a colonoscopy years before that was awful. i was on a med called doxepin for my mast cell stuff. That supposedly caused the anesthesia (versed?) not to work at all. It paralyzed my vocal cords, but I was fully awake and in horrendous pain. Colonoscopies really, really, really hurt if you are awake. The nurse kept on telling the doctor, "Wait, I think she's awake!" he ignored her and proceeded. When I later confronted him about it, he told me I was mistaken. How could I possiby be confused about THAT? I repeated the conversation he had with other people in the room. (I distinctly recalled that he was chatting about an old neighbor of mine (a surgeon) whose son had recently made a perfect SAT score.) He still insisted that my colonoscopy was uneventful....for HIM, maybe.

I hope yours is really uneventful. Don't be afraid and be sure to let us know what you find out.

Hugs-

Julie