Hi I’m backbeen while now 69 and still dysautonomic

[Dystasysta]

I guess my Siri that I would grow out of this wasn’t true. I was diagnosed in my mid to late 50s was sent to Nashville and Ohio and when I came back home like many of you there was no one doctor for this but each one worked on their own part. For me that was a cardio and an EP and A few G.I. and motility specialist. Over the years other things were added MCAD abnormal gene defect in my connective tissue and so forth. I learned to advocate for myself and sometimes found myself telling the doctors what to doAnd that worked for a long time until the past few months when this ride decided to change up it’s ways. This illness can be very isolating and lonely at any age but especially as we get older I am finding out. So today I just wanted to say hello again there are many faces names I bet that I recall from when I used to be on Facebook and was active in many of the discussion groups which I I had to stop due to some thing called sensory overload when I was on the computer something about pixels same sensory overload which is taken over my life in regard to driving reading my book clubs anymore I’m going to many places are used to enjoy. I just wanted to reach out I have some questions for those Who have had colonoscopies as all my doctors have wanted to avoid it for many years and now pairs it is necessary to rule out and he thinks serious and to help explain some changes. It’s alwaysBeen IBS and Gastro paresis until the MCAT got involved and I hope that I’m doing led to making some right choices. But for now tonight I just wanted to say hello and to wall my prayer of Tikkun Olam .. heal   Repair the inner and outer world , 

 

[Pistol]

@Dystasysta - welcome back ! I am sorry you are having such a bad time. 

6 hours ago, Dystasysta said:

I have some questions for those Who have had colonoscopies

I too have GI issues related to dysautonomia, and had several colonoscopies. I suffer from autonomic seizures, and the prep for a colonoscopy always triggers them and a full flare to follow. Since I - thankfully - have had normal scopes my PCP orders colo-guard ( send-in specimens from home ) and I only do a scoping every other year. I used to have to be admitted to hospital for the prep so I could receive IV fluids during it. Now I get IV fluids at home, so I can do the prep at home, but even with the fluids I still have a flare afterwards, and have seizures during the procedure. 

I think colonoscopies are very important to ensure our heath and for early detection of problems like cancer etc, so a colonoscopy can be a lifesaver. I would definitely go through with it, especially at your age ( I am 54, so I too am at the age of higher risk of colon CA ), but i would discuss getting IV fluids during and after the prep to minimize POTS related complications. 

[Dystasysta]

Hello nice to meet you yes my motility G.I. is a Neuro gastroenterologist ? She wants to admit me to the hospital and monitor me for a day or two before and after the procedure they think that’s the safest way to do it to prevent me from getting too dehydrated I guess the concern is even though I am on a lot of medicine for my labile blood-pressure which during a tax usually goes very high when dehydrated I can go very low and I am highly allergic to an awful lot of medicines so they can have someone from Cardiac watching over the anesthesia? I wish it was 20 years ago before I got sick and you could just put the TV in your bathroom and be at home miserable but safe but they don’t think that’s a good idea so you have gone through being admitted and having the procedures done there? I’m just hoping it’s not bed pans after prep that would be horrible thought. You’re 54 you’re still just a Youngin with a 🙂

[Pistol]

@Dystasysta When in hospital for the prep they have a bedside commode next to the bed and thanks to the IV fluids I am able to use that instead of a 😬 bedpan. I think you should be fine with a whole gang monitoring you, even with all the allergies you have. My BP also swings wildly when under stress, but I always have done pretty well with scopes. Wishing you an easy time with it and good results!!!!! Please let us know how it goes!!!!!

[Dystasysta]

Thank you for the dishes snd input I’m second guessing myself while I wait for insurance to approve and get a date  . Am I putting self in more danger with covig still and my drs for years have told he avoid hospital less no choice like my severe autonomic attacks cause my immune system not very good etc  I’m praying but can’t figure out what I’m being led to . My last scope was just endoscopy ( they didn’t want prep ordeal ) and I was ok but I was much healthier then . I was never such a chicken had colonoscopy few times before this autonomic h*** came to visit and set up housekeeping  . I suffer from severe sensory overload past two years have to wear dark glasses can’t drive on highway sudden  movement affects me bright lights etc . I have acclimated to my new norm and that’s what I drs thought has made me lil stable but now this . If I could convince somone to stay at my apt while I prep abd drink a lot propel I  wTer and Gatorade  and have it done by a regular gi as outpatient  would I be safer . I can’t imagine wearing a face mask for three hour days straight durring prep . I became so isolated I don’t know what’s best anymore .I left my f  account years ago too much stimulation and o thought o would get better that if I took a deep breath and put on my bug girl panties it would dissaoeae. It didn’t only I did to many lovely people who did know what was happening to me and eventually those that didn’t got tired of me not being who I was having to go day by day fir plans and not enjoying what we used to share . Sorry long pist think I’m getting nervous and concerns as I e been in my local hospital enough times and while didn’t like it was never really scared .   

[cmep37]

I can completely understand where you are coming from @Dystasysta - I also struggle with bright lights, loud noises etc and will not go to hospital unless I really, really need to.  However I think your situation probably qualifies as really, really needing to - several of my relatives have died of bowel cancer that was not detected early enough.  If your consultant who knows your history thinks you need to be treated as an inpatient then she is probably right.  Is there any way you could use a visor/face shield rather than a mask in hospital, at least for some of the time?  Have you need able to get vaccinated for Covid?  I can also sympathise with the friend issue - I have also lost a lot of so-called friends who didn't want to spend time with me if I wasn't the same bubbly, fun person I was before POTS or who couldn't understand that the things they suggested doing weren't suitable for someone who could only stand for 5 minutes at the most.  I have decided it was their loss not mine and have invested the time into the friends who did stick by me and who tried to learn about POTS and what it meant I could do.

[Dystasysta]

Thanks yes I am fully vaccinated . The dr is thinking my IBS maybe micro colitis and I guess only way to know is to be in there . She is a neurogastroenterologist who I met after being diagnosed with on and off gastroperisus . I guess my bottom doesn’t get the messages right with my brain for muscles to work correct down there . I have had ibs forever but they stopped doing scopes on me when my autonomic became issue . As we all know not all roads lead to dysautonomia but they tend to assume sometimes . I got diagnosed with MCDA few years ago but the Gastrocrom has helped with some those symptoms of hives and burning sensations . Anyone on that .Hod bless you all for being here .