Those Of You With Autonomic Gastro Problems

[arizona girl]

I had a spontaneous rupture of mine in august and we still don't know why. At the time of rupture It felt like my intestines clamped shut and nothing could get thru, I felt some air trying to move thru, then I felt something pop and very sharp waves of pain started. Nine months prior I did get seat belt bruising in a 50mph car accident, but ct was normal at the ER. Also during that time I developed very bad lactose intolerance and stopped taking in dairy a month prior to the rupture. They did find a few diverticuli in all segments of the colon post recovery, but there had been no abcess at time of rupture, which usually happens prior to one of those rupturing. It was a free perforation, a small pop that caused a bit of air and fluid to be released into my abdomen and caused a very high white blood count. Miracle of no surgery as I responded to high dose antibiotics and the pop appeared to close on it's own. Spent 4 days in hospital and still haven't recovered to where I was before it happened.

As many of you with gastro issues, before this happened I had problems getting full fast, constipation to loose watery yellow acidy stool. Bloating, belching and passing gas. Can't tolerate any type of tight clothing around the belly. So I guess I'm wondering if this is what happens to most of you, or if any of you have experienced a near colon rupture or have had one? What did you doctors say about it in relation to the dysautonomia if you did? I may still have to have surgery and my blood pressure always drops during minor medical procedures, I worry what will happen with a major surgery!

I also just found out my sister was b-12 deficient because she can't get it thru her digestive track.

So if any of you have been down this path, how did you manage the whole thing?

[all4family]

I have dysmotility, but that is all I can find out, because I can't do the EGD, (or have decided not to) because the problems with the meds, and stuff. After vomitting for 2 years, I was finally able to start getting food to stay down when I laid down. But it came at a price, because when I had a CT done they said that my esophogus is dialated. Which has me concerned as to how much it can handle. I have had problems with the constipation and diareah, and the most unusual thing is when I try to have a BM, I feel like I have no muscle control to move it. I truly believe my GI problems related to the meds I was on before, because after getting off of them I stopped vomitting. But then again I do still need to lay down to eat most of the time. GI problems are some of the worst to diagnose, because it is really hard to just "look" at everything. Did your doctor say weather or not the accident may have caused the rupture? Sorry I can't tell you any good advice to handle it. But I can tell you I do have similar problems. Also, I know you said you have been tested for EDS vascular (I think I am right on this?) have you been tested for any other EDS? Just a thought. Take care, and I hope you get this solved soon.

Suzy

[arizona girl]

I have dysmotility, but that is all I can find out, because I can't do the EGD, (or have decided not to) because the problems with the meds, and stuff. After vomitting for 2 years, I was finally able to start getting food to stay down when I laid down. But it came at a price, because when I had a CT done they said that my esophogus is dialated. Which has me concerned as to how much it can handle. I have had problems with the constipation and diareah, and the most unusual thing is when I try to have a BM, I feel like I have no muscle control to move it. I truly believe my GI problems related to the meds I was on before, because after getting off of them I stopped vomitting. But then again I do still need to lay down to eat most of the time. GI problems are some of the worst to diagnose, because it is really hard to just "look" at everything. Did your doctor say weather or not the accident may have caused the rupture? Sorry I can't tell you any good advice to handle it. But I can tell you I do have similar problems. Also, I know you said you have been tested for EDS vascular (I think I am right on this?) have you been tested for any other EDS? Just a thought. Take care, and I hope you get this solved soon.

Suzy

Hi suzy, they only tested for the vascular one and it was negative. I'm only mildly mobile so I don't really fit any of the others. I wonder about the accident too, so far no one's said they think so, because it was 9mos after the accident. But I haven't had any more of those bright yellow acidy passing, since the colon rupture, then again I haven't had very much dairy either. Maybe I should pig out on some dairy and see if it comes back. Also, I had, had a colonoscopy at 50 and the doc had said I had the colon of 30 year old, less then 2 years later if pops, go figure!

Thanks for your thoughts. I really hope they get you to the right place soon, but like me, it sounds like they haven't finished testing and trying things yet. Dialated does that mean it's to wide or to tight? A friend of ours was to tight, had trouble getting found down. He had to have is stretched a few times, the last doc said they weren't being agressive enough and really stretched it, and he's been fine since.

I sure hope you don't miss your doctor appt, that's really important. I hope your hubby gets better fast. Isn't there any one else to drive you?

[all4family]

Yeah, I think that the accident sounds suspicious to me also. There is a lot that they can't see on CT's. Also they couldn't see (at least I don't think so) bruising of the intestines. Maybe there was bruising, that caused slow digestion, which could lead to something like that. (just my thinking. I am no doctor.) I don't know if I would try all that dairy though. The ways we torture ourselves just to find these things out ! It would be nice if the answers were just a little bit easier to come by!

They showed me the CT of my esophogus, and it was round at the bottom where you could see that the food must have stretched it out because it didn't digest. looked like I had a second stomach. I am thinking this may be some of the source of my extreme chest pain. Glad your friend got some relief. I didn't even know they could do that.

I really don't have anyone else to drive me. Even if I got a shuttle, I couldn't handle it, because I have to lay down in the car for most of the trip. If I don't I end up throwing up a lot, and that wouldn't go very well. Then I also would need to be able to bring my wheelchair which fit's in the back of our van. And I really need him around, because I faint, and don't want to be stuck in a hospital somewhere. He also helps me when I am real wobbley, and am in a sick spell. So even if I could I would still need him. It's funny, because I don't realise how much I depend on him. I will just hope that he is better real soon for now. He has slept 2 days away right now. I'm worried about him.

Suzy

[morgan617]

It may be the accident caused a weakened area that didn't show up, kind of like a small anuerysm or something they missed. Maybe they assumed an area was a diverticuli, when it was actually a bleb from the accident. Will probably never know, but it sounds horrible.

I have tons of GI stuff too, gastroparesis, yellow acid stools, but never constipation and I take immodium every day. I was having a horrible time with the diarrhea and looked it up and saw that the gall bladder can cause this, yellow stools are an indication of too much bile in the gut. I have had a horrid gall bladder forever. My esophagus is the opposite, way too tight, I have to get it dilated to get food down.

I'm not sure what happened with your bowel, but my guess is, they missed a little thing in there and it was just a matter of time. Hopefully when you are fully healed they will do a colonoscopy to make sure the whole colon is okay, so this doesn't happen again. I am shocked they didn't operate, to get the waste cleaned out of your abdomen, whether or not you responded to antibx....morgan

[arizona girl]

It may be the accident caused a weakened area that didn't show up, kind of like a small anuerysm or something they missed. Maybe they assumed an area was a diverticuli, when it was actually a bleb from the accident. Will probably never know, but it sounds horrible.

I have tons of GI stuff too, gastroparesis, yellow acid stools, but never constipation and I take immodium every day. I was having a horrible time with the diarrhea and looked it up and saw that the gall bladder can cause this, yellow stools are an indication of too much bile in the gut. I have had a horrid gall bladder forever. My esophagus is the opposite, way too tight, I have to get it dilated to get food down.

I'm not sure what happened with your bowel, but my guess is, they missed a little thing in there and it was just a matter of time. Hopefully when you are fully healed they will do a colonoscopy to make sure the whole colon is okay, so this doesn't happen again. I am shocked they didn't operate, to get the waste cleaned out of your abdomen, whether or not you responded to antibx....morgan

Morgan, do you eat a lot of dairy, cause I was having that yellow burning acid stool, I stopped eating it about a month before the colon rupture and haven't had it since. I'm back to things not moving. I had my gall bladder worked up twice with that scan the first one was 50/50 because of duplication of symptoms the second one was very normal. So they sort of ruled out my gallbladder.

Also you can get your esophagus stretched a friend of ours had it done 3 times, they were more aggressive the last time time they stretched it and he hasn't had a problem since, it's been a couple of years now.

I think to the accident might have contributed, I'm going to have an attorney handle it. I've already had follow up colonoscopy and they found a few diverticuli in each segment of my colon, but nothing that looked like it would pop. My rupture was in the sigmoid, most common place of rupture. Surgeon said it will probably happen again at some point, so I'm sitting here playing russian roulette with my guts.

[arizona girl]

So the main reason I'm asking about this, is I am wondering if anyone else has had there gastro problems advance to a colon rupture?

[juliegee]

Hey Arizona Girl-

Short answer- no. But we have a family history of major GI dysmotility and other things rupturing. My GI stuff presents differently all of the time: I have awful GERD constantly. When i was younger (25-40's) I had a long history of very, very painful IBS with uncontrollable D. As I got older, things slowed down and I was DXed with gastroparesis and colonic inertia. Many of my family members also have similar GI stuff. One of my brothers had his aorta rupture when he was in his late 20's, another brother had a cartoid dissection in his early 30's. My son and I were recently tested for EDS-type IV. It was negative. We were also tested for something similar called Loeys-Dietz Syndrome. You might want to look into that.

Sorry for all you've been through.

Big Hugs-

Julie

[MightyMouse]

Have you had a collagen defect ruled out?? Those with such disorders are prone to ruptures and dysmotility. You can find out more and EDNF.org

I have a collagen defect of unknown type--but it is genetic as my female relatives have it too. I have majorly slow motility but no ruptures. I was tested for a gene defect, FGFR3, which is known to cause bone and collagen problems ranging from dwarfism to Marfan's (tall, thin folks with collagen problems and heart issues).

Nina

[juliegee]

Have you had a collagen defect ruled out?? Those with such disorders are prone to ruptures and dysmotility. You can find out more and EDNF.org

I have a collagen defect of unknown type--but it is genetic as my female relatives have it too. I have majorly slow motility but no ruptures. I was tested for a gene defect, FGFR3, which is known to cause bone and collagen problems ranging from dwarfism to Marfan's (tall, thin folks with collagen problems and heart issues).

Nina

Nina-

Dumb question. How do you have a collagen defect ruled out? Did I do that by testing negative to the EDS IV and Loeys-Dietz? I have a geneticist at Emory who is NOT very well versed in conective tissue stuff.

Thanks-

Julie

P.S. How's your Dad?

[MightyMouse]

I was seen by a genetics specialist who knows EDS as well as other disorders. I had genetic blood work--they were absolutely certain I would test positive for FGFR3, but when it came back negative, they basically said I have an "as yet unidentified collagen defect". I have loose joints, I have wound healing problems, but not necessarily skin related wound problems (mine have to do with vascular issues).

As for my biological father, he's doing really well... and my step dad is recovering from double pneumonia.

Nina

[arizona girl]

Thanks you for the input all of you. Unless it is EDS doesn't seem like the gastro problems progress to rupture. No one has responded that this did happen to them. I guess that helps narrow things down a bit.

The cardio I just started seeing is doing a conference call with me on friday. She wanted all my med records to review herself. I think she used to be a researcher. She knows things about metabolic syndrome/pcos, that I didn't even know about, and I did a lot of my own research. She is aware that we don't know the cause of my dysautonomia and said she would help me figure out what to do next. She seems to get me and I could see her wheels turning trying to figure out my complex medical symptoms.

I really hope she is able to help me figure this all out. It would be real nice to have an actual advocate in the medical field, so I don't have to keep trying to figure it out by myself. I've done a good job of that, getting heard and getting the right tests done though is always a challenge isn't it? Thank god that the TTT was positive. Isn't it funny how one positive test suddenly legitimizes your situation and all of the sudden, well maybe you don't have anxiety or depression or a personality disorder. After all the autonomic system is supposed to work without you even knowing its doing what it is supposed to be doing. Of course when it's not working right, we all know what that feels like

[juliegee]

Hey Arizona Girl-

I'm glad your cardio is looking further, a ruptured intestine is certainly nothing to take lightly. I looked up my genetic testing as I'd had family members with anuerysms/dissections/ruptures. The genes that they looked at for me were: COL3A1 (vascular EDS) and TGFBR1 & TGFBR2 (Loeys-Dietz Syndrome.) The LDS is a relatively newly identified genetic abnormality. If those genes haven't already been looked at, I might ask your cardio about it.

Let us know what you find out. I'm praying it was a one time thing.

Hugs-

Julie

[arizona girl]

Hey Arizona Girl-

I'm glad your cardio is looking further, a ruptured intestine is certainly nothing to take lightly. I looked up my genetic testing as I'd had family members with anuerysms/dissections/ruptures. The genes that they looked at for me were: COL3A1 (vascular EDS) and TGFBR1 & TGFBR2 (Loeys-Dietz Syndrome.) The LDS is a relatively newly identified genetic abnormality. If those genes haven't already been looked at, I might ask your cardio about it.

Let us know what you find out. I'm praying it was a one time thing.

Hugs-

Julie

Thanks julie, I saw a gene doc who did the col3a1, it was normal. Didn't have the others done. I'll have to look at the symptoms of LDS again. I remember reading about it, but not what I read. I think I would have remembered if it sounded like I fit it. But that's a good idea to re-visit. I gave the cardio doc the print out from this website of mechanism and causes and treatment. There are so many other tests to still do, especially with this hypertensive variant that I have along with the syncope.

I hope the rupture was one time too, but we do have a family history of colon ruptures, I just have lived a much healthy lifestyle then my upper generations who've had it happen. If it was caused by the accident, it would be a relief in a way, cause it would mean it wouldn't happen again.

thanks you again for the input, it does help!! My prayers with you and yours as well!

[juliegee]

OMG, the hypertensive aspect reminds me of another genetic disorder called fibromuscular dysplasia:

http://en.wikipedia.org/wiki/Fibromuscular_dysplasia

I recently learned about this one from my gyno who was DXed with it after she suffered TWO cartoid dissections. Hypertension is a part of it, as can be kidney issues, and colon ruptures. Please check into this one. My gyno takes daily meds and has suffered no further dissections/ruptures/anyuersms. Please bring this one up as a possibility when you speak with your cardio. Best of luck. let us know what you find out.

Julie

P.S. My gyno had to go to the NIH to get her DX, BUT if you already have an idea of what it could be any geneticist should be able to test.