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Endoscopy/colonoscopy And Dysautonomia?


shathaway0811

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Hi all,

First I just wanted to say thank you to those of you who responded to my previous post. I sincerely appreciate all of those responses, they were very kind and thoughtful and made me feel a lot better!

Secondly, I saw a GI specialist yesterday (not really informative, he barely examined me at all and didn't really seem like he thought anything was going on despite the fact that I've been in pain for 3 years since the last time I saw him and things have gotten progressively worse despite me doing everything I was told to treat the symptoms... nice guy just don't know if he took it seriously). But anywho, I will be having an endoscopy and colonoscopy for exploratory/diagnostic reasons.

I'm just wondering if any of you who have had GI issues have had those procedures done and if they found anything related to your dysautonomia? I don't want anything to be wrong, but at the same time I kind of hope they find SOMETHING just so I have an explanation and there can be something done to treat it effectively. IBS is not what's going on, my symptoms are far worse and consistently different than those experienced with IBS (I have had that issue before now) and everything I've tried for that hasn't worked at all.

Thanks y'all, and have a great Friday and Valentines Day Weekend!!!! <3

Sarah

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Hey Sarah, I've had both tests done, each one a few years apart. With the endoscopy they found I had delayed gastric emptying which means food say in my stomach longer than usual, and the colonoscopy was normal. I was diagnosed with ibs but I see ibs more as a blanket diagnosis of you have digestive problems but we can't tell you what is causing it. The diet changes I made really did nothing for any of my symptoms, and have still not yet found anything that helps, my symptoms tend to come and go on their own accord.

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I have had multiple Colonoscopies and Endoscopies since my diagnosis with Dysautonomia. They were helpful in pointing towards a diagnosis of gastroperisis and GERD as well as eliminating other causes for my symptoms. My Dr ordered a gastric emptying study following these tests to confirm diagnosis of gastroperisis.

Just FYI be careful with the prep... I find it necessary to drink extra fluid along with the prep in order to prevent hypovolemia and problems with the sedation the next day.

Hope your tests go well!

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I have gastroparesis (the antrum portion of my stomach does not work), esophageal dysmotility, colonic inertia and pelvic floor dysfunction. I have had many EGD's and colonoscopies. I was told my issues are due to scleroderma sine scleroderma, but my new ANS doctor thinks that it could be damage to the vagal nerve causing the digestion problems. That is one of the questions that is still in the air at the moment.

While at Mayo they did a gastroduoadenal manometry exam and we were able to find out that the antrum portion of the stomach (the portion that grinds up your food before sending it to the small bowel) does not work. The doctor there thought it was neurological in nature (vagas nerve damage). I just went through repeat ANS testing with a new doctor and one of my questions to him is if my GI problems are dyautonomia related. We will see.

Good luck on your procedures. They aren't too bad to go through.

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  • 2 weeks later...

As part of a different procedure (fecal transplant for C. diff) , I had to get a colonoscopy. Due to my condition, the GI doc thought it was best to skip anesthesia entirely. This ended up being a great decision!

The prep WAS bad. And I echo Ancy's suggestion of drinking more fluids. Hopefully I'm not being too graphic here, but after the first two runs to the toilet, subsequent runs caused an intense burning sensation down there after going. This was the result of the raw gastric juices making contact with the rather sensitive tissue down there. Cleaning off with a wet piece of toilet paper after going each time quickly remedied this. I mention it only because no one else mentioned it to me and it made the experience far more bearable. Unfortunately for me, the deluge never stopped and from ~5pm to 6am. I was up ALL night. I had 'saddle sores' from spending so much time sitting on the toilet. I ended up driving to the hospital with a towel underneath me just in case. Thank God (literally!) I was able to get to the hospital before the next rumbling happened. Yes, I drove myself. :)

For my procedure, it went rather smoothly. I went to the hospital, they started to prep me like a regular patient when I stopped them and said we're not doing anesthesia. They were rather puzzled, but looked at the charts and saw the notes. They gave me an Immodium to stop prep-induced diarrhea, started a saline IV on the top of my hand, which caused me to pass out. Why, I'm not sure, as I've actually done my own blood draws before and I've never had a problem with blood draws from the elbow or arterial blood gas draws from the wrist.

Once I was back among the living, it was back to the operating room. I was rolled over on my side, given oxygen (ick..hated that feeling), and the Dr started the procedure, using a pediatric scope. During the entire procedure there were 2x ~3 second periods where I yelped from pain when he was pushing air into my colon. Yes, that part hurt, but the pain was over as quickly as it came on so it wasn't that dramatic. I did faint very briefly at one part, and came close to fainting at a few other parts, but I faint very often in real life and hadn't slept in almost 36 hours, so I chalk it up to that. We had discussed this previously, so any time I started to faint, they'd pause and wait for me to feel better.

I have a very twisted and self-deprecating sense of humor, so the ******* jokes were flying fast & furious with the staff, Dr, and me during the procedure. "Everyone calls me an *******, now I've got video proof!" The whole procedure took less than 20 minutes. At the end I joked "wow...all of that and you didn't even buy me dinner!" They wheeled me into the recovery room, wherein I scare the recovery nurse -- I was fully conscious and she wasn't expecting it. They said I was free to leave, but I asked if I could sleep as I hadn't in 36 hours. No problem. I slept for about 2 hours. When I woke up, they brought me breakfast with a note from the Dr, "how about I buy you breakfast instead?" Touche.

After that, I showered, got dressed, and drove to work! I was at my desk by 12pm. Everyone at my job was surprised to see me and thought I'd be gone for at least 1-2 days. They couldn't believe it. I felt fine, actually.

RE: IBS, my GI doc and I had a few discussions on it. The short: we both aren't too sold on it as a real diagnosis. Real symptoms, yes. But as to the cause, GI docs label someone with IBS and that's the end of it -- they don't seek to find the cause. After my fecal transplant, my GI tract went through quite an adjustment period. I started having gastroparesis and what most docs would have called IBS. EXCEPT in my case we knew what had changed -- the bacterial flora of my intestines. Nothing else. So we knew where to look. After some tweaking of the intestinal bacteria through diet, a little chemistry, and fermented/live foods, the bacterial colony balanced itself out and life was good. It's been over two years now, no problems. Well, no GI problems. I still am very orthostatic, still have POTS/dysautonomia, still pass out very often, but the GI's working fine.

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I'm in the hospital as I write and have been for days. Things had gotten very bad for me. I had both endoscopy and colonoscopy at the same time under general anesthesia today. I had a gastric emptying study yesterday. I definitely have gastroparesis so my stomach is not emptying as I suspected. It’s from the POTS or the CRPS. Probably pretty far along apparently. They didn’t find colitis or obstruction in the endoscopy or colonoscopy when I was finally ok enough to get there (it was an eventful day before and morning in a really bad way primarily because of the Addison's and partially the POTS). They cut out some polyps which are usually nothing. But the main thing was to take a lot of biopsies so they could see the muscle/nerve problems in my stomach and bowel that move the food along and digest it. There was still decomposing food left in there from three weeks ago when I last ate solid food. I actually feel better without all those toxins in my system but still very weak. I've had uncontrollable diarrhea for weeks and the prep sure didn't help. There is no possible way I could have done this outpatient with the prep at home. I have had a colonoscopy outpatient with prep at home in 2008 but this was a different story. I was in better health at the time although I've had relapsing and remitting POTS since 2007.

We won’t know the results of those biopsies for several days but the doctor came in asked me if I wanted to go to a nursing home. I said no I wanted to stay with my dogs so he set me up for home health care nursing to come evaluate me for their service or hospice. They will come within 48 hours of my discharge. They wanted to come as soon as I got home but I said no. So it sounds like this is pretty bad for me right now. The doctor acted like they may not discharge me tomorrow as planned because I’m not in good enough shape. My electrolytes are messed up for one thing and they need to get that straightened out. it’s just not something you can be very far off on and live. So we’ll see how well I am tomorrow but I’m going to push to go home. I’m only on IVs still…no liquids or anything else. Not even water. Most of my meds are now IV or injection because I'm not absorbing oral meds. And I take a lot of meds. I’ll stay that way for now to let things settle down if they will.

I don't want to scare people. I do have a lot of other problems like CRPS, Addison's, thyroiditis, rheumatological diseases, etc. etc. Most of you don't have all this. I'm just relaying my experience today. I just hope it's not as grave as they made it sound today. I need to process this all and decide what to do after we get the finals results. I just felt like writing something to some group that might understand. I'm a little shocked.

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So sorry you are going through all this! You are not alone! Last year when I was in a bad way they wanted to send me to a nursing home, at 23!!! My family stuck by me and they just sent me home with home care but I was a real mess...

Please be careful, of they are saying you need a nursing home what you have going in may be extremely difficult to manage on your own. Are they going to send you home on IV fluids? How do they expect you to stay hydrated?

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Oh dear toomanyproblems -- so sorry that you are having a rough go of it right now. Are your electrolytes normally abnormal or did they become this way due to the prep? I'd think the prep could cause certain imbalances. Like Ancy was also concerned about, I just hope you'll be able to keep hydrated at home. Please take good care of yourself.

Wishing you well.. Sarah

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I really don't know if I'll have to stay on IVs but I expect that's what they're thinking if they're talking hospice. If my bowel isn't working at all and I can't digest food then a feeding tube bypassing my stomach that won't empty won't even help I don't think. Plus I'm immunosuppressed from my rheumatological autoimmune disease drugs so the risk of infection with a feeding tube is very high. It's hard to get enough nutrition for long on IVs alone.

The prep can cause electrolyte imbalances for anybody but my electrolytes were way off before the prep started. That's why I was already in the hospital. Weeks of diarrhea I'm sure. The Addison's can cause problems with electrolyte control too. No internal regulation there at all. It's up to me to try to keep a lot of my autoimmune endocrine problems sorted out by taking meds to replace them in the amounts needed and it's a real challenge with some of them affecting others in an intricate balance. My med doses change each day depending on what I'm doing, even the weather like how hot it is, and whatever else is going on. Your body normally does these adjustments seamlessly on its own. Hard to appreciate until you have to guess on how to accomplish that ever changing dynamic balance yourself. When I stopped absorbing oral meds I was stuck with injecting what I could and sublingual meds but that stripped me down to the bare essentials from a lot of meds I was on.

I just feel like my whole nervous system, vascular system and immune system is completely broken right now and I'm not sure it's going to get better. I've been lucky to have the medical and scientific background to handle these problems so long on my own. I feel bad writing such a downer post but I think my toomanyproblems has finally caught up with me. I have never used forums to vent so I guess I saved up for a really good one. I'm sorry. Thanks for the well wishes.

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