WinterSown

I drink coffee a lot. Are you choosing decaf because otherwise it makes you hyper? Sometimes I drink plain hot water with a lemon wedge.

Food is a trigger--volume is my biggest enemy. My digestion, in to out, is very wonky. I do better if I eat small meals. I am intolerant to high fat--soon finds me doubled-over and sobbing in the throne room. I have a few IBS and Chrohns books here with info and recipes--I fall back to a butternut soup recipe on bad days (cannot believe how awesome and yum and no bloat this is). I bought the books used online with free shipping so no great expense to have them as a reference. I've been having a flare the past few months and have been seeing the procto again, I now have another script for PT or biofeedback (as he calls it) to help with motility--it's going to be core. I'm already doing this at PT but it's going to step it up. The advice is to eat less, don't eat what will trigger you, and don't eat what you think may trigger you--trust your instincts. Eat better and you feel better. He also told me a couple of years ago to cook everything---no raw fruits or veggies. Then slowly add them back in. I do well with melons but half a Cutie give me a bellyache--sigh. Cooking was helpful--it cut down on a huge amount of bloat. Cooked veggies and fruits do digest faster.

I have NCS, I get Drop Attacks throughout the day. What previous preps have you used? This is something you can fix or lessen in severity. For my first colonoscopy, a few years ago, I was given miralax to drink with a gallon of water (or some very similar thing) and it made me sick as a dog. I felt horrible inside my head, I was shaking and I threw up a lot of it. Last year I had another colonoscopy and the doctor switched me to Prepopic which is a different type of laxative and is much less fluid to drink. I held it down fine and didn't feel ill at all. Ask if you can have a choice for preps and tell the doctor your previous reactions--they will give you a script for a different prep if they think that is right for you. It is very important to take care of yourself, colonoscopy is not a fun experience, not at all, but it is a necessary evil. I hope it goes well for you.

Yes he is, butt that's not his real name. LOL

Thank you. I hope to see the him on Thursday, probably will. In the meantime I see my DPT tomorrow and my EP on Wednesday--both already scheduled. I have to tell the two other doctors before I see Dr Howzyerbutt again. It's just so arrrrrggghh.

Start slow. Don't do thirty reps, do three reps. And slowly, slowly work your way up to more. I do a lot of exercises on my bed and I have some balance platforms to help with core and balance. And I walk. All of this is at my own pace. When I don't feel I can do more I do not do more---this was hard to learn but it was part of winning. I won't be defeated admitting I must do less for today or a few days. When I am ready I step up the pace and reps as I can. I have had help with a physical therapy doctor who has created a program specific for what I need with consideration of my limitations. As my medical doctors adjust my care he adjusts to match them so I am never doing beyond my capacities. Most important I've found is to be kind to yourself and be forgiving to yourself. Remember that you can do everything 110% right but things still go wrong. Go slow, go safely, and only do what feels right--listen to your head as well as your body. Pull back when you need and advance when you are ready. Feel better soon.

From what I've read so far yes, sigh. I've already had a sphincterotomy; getting a fissure four years ago (this very day!) was the first sign that something was horribly wrong with my body. The doctor is good surgeon who did not originally know anything about d'mia but he's been learning-- he said 'Trudi, you gotta lotta wrong with you.' Despite the truth of it, it's nice to have someone care for me who understands the complexities of what d'mia does to your body.

He always says Hi! How's your butt? He does keep his nails quite trimmed (yay!).

Thank you. This is one doctor who is not part of the hospital group that does my D symptoms, but he has taken care of me for a few years. He's down the block from my cardiologists. I feel very yin and yang today. When I read the DX I was more happy that the confirmation was a confirmation of me being accurate in my descriptions. We all know that sometimes it's an uphill battle to be believed. Fistulas are not cool so for now I'll enjoy the exhilaration of a diagnosis. Never give up, never surrender!

Dr Howzyerbutt sent me for a pelvic MRI series which I had done yesterday afternoon. The results with pictures were online today, their speed is amazing, and I got a nice gift blanket too. The opinion is Chronic Intersphincteric Serpiginous Perianal Fistula. I have no idea how this is treated and only a vague idea about how it happened. I don't personally know anyone who has had a fistula. If anyone has been so unlucky could you please share your experience. I will call Monday to schedule a followup with the doctor but I hope to have some knowledge about it before the visit.

it's very complicated but I think it should go to peer review

Don't go to the ER before calling your doctor or the ER first, they'll tell you to come in or not. This is my 24/7/365 friend. At anytime my right leg goes numb, sometimes my whole right side, sometimes my left cheek and hand also go numb at the same time as the right side. I've learned to keep on walking--it does not freak me out anymore though when these symptoms started I was quite concerned. It does wear off in a few minutes so it's not a long lasting sensation, just weird more than anything. It also comes with pins and needles--parasthesia--like opening a can of new seltzer--that stingy effervescence. Drives me nuts for a bit. The numbness and the tingling are very distracting, and that tingling is stinging, but overall it doesn't do any lasting damage. It's just one of our nastier sensations. My neuro has sent me for many head and neck scans. They did find some radiculopathy; I go to PT to help with that. I get a good workout and a great massage from the doctor there. Definitely have your numbness checked out--my neuro was very helpful with that.I wish you well.

I stopped at my insurance company today and asked their advice on what is the right procedure when you think you have not been properly served or cared for by doctors they have paid. I had some testing done and well, you shouldn't need to have the same test three years in a row! The third test by the local hospital group was much more professional. I want to find out the right way to proceed--is this something the insurance company takes care of or do I go to the state? I'm not sure yet if I am observing genuine offenses which should be reported, being rude is not a reportable offense but not doing your job is, so I must be very certain and I must proceed with a path that repairs rather than damages. I do well know that many doctors do not know dysautonomia when they see it but they know symptoms which can be proven with tests. Ignoring the documented results in front of you is problematic. The doctor, I think, needs to learn some things--respect your patient being first, but really--if there is nothing in their partnership spec book on what to do when you encounter something you've never seen before they might want to add some pointers about what to do because doing nothing does nothing but take the patients money and leave them still in need of care. The woman I spoke with at the insurance company was so kind and caring, and I am glad for that, she made it easy to talk about something I believe needs to be looked at by professionals. She took my information and she did some checking and came back with a number for a special division in their company that helps members with advice and guidance. She also told me to also pursue with the state's office of professional medical conduct. 2019 is gonna be a roller coaster.

And hopefully you won't again. If you do get it checked out. Do remember to discuss it with your primary to see if you need any changes to your diet so you do not trigger another event which will cause bleeding.

Magnesium can make you poopy. Which is good if you are constipated but not good if you are normal or already loose. I am glad you found a way to control this just by cutting the magnesium.

Fatigue is a very common symptom--I can vacuum the living room and be wiped out on my bed for two hours afterwards. Fibro is real but is your pain from fibro? It could be from exercising when your body needs you to be doing less physical activity. I've recently read an article about living with chronic illness and one of the points was to recognize that you need to be kind to yourself. If doing thirty reps is wiping you out then go back to ten. I usually set the bike resistance to 6.1 or higher but when I'm beat it's less than 5 and I knock off a LOT of minutes. So do less for a while. It's not going to create deconditioning. I go to PT twice a week and one of the doctors at the center told me that exercise, like diet, is acruitive. It's not okay to entirely stop but for a while it is okay to do less. Your body is telling you something so listen. You want to exercise which is great--that's better than wanting to quit which would be bad for you. During flares I do a lot less reps and lower the resistance and make an extra effort avoid my triggers--on bad days I lower the lights and do some yoga or 'gentlecises' on my bed. Just a little will still help with my balance and circulation. When I feel ready I slowly build back up.

You need to see your primary who will recommend proctologist aka colon and rectal surgeon to diagnose this. If you don't need a referral then call a local proc shop and make the appointment for whomever has the next appointment. Rectal bleeding is something that needs to be checked out by a pro. You've had this a week so make the appointment to get it checked out asap.

I made Poached Pears in the microwave. So easy. Put some chopped fresh or frozen fruit in the bottom of a microwave casserole, nestle in the peeled pears, drizzle with some syrup or sprinkle with some sugar (optional), I added some nutmeg (spice optional), cover and microwave using the frozen vegetable setting. These can sometimes boil over in a shallow casserole so put a larger plate with some paper towels under the casserole to catch any drips.

What do you do that makes it feel better or reduces these events?

I don't lose consciousness. I used to collapse but I've been in PT for well over a year now--I've trained for balance, strength, core and gait. It's unlikely I will smash my face or get large angry bruises on my shins anymore. The worst part is not the collapsing; I think the worst part is feeling your own personal universe explode and come back together again in your own body. Imaginative words for unique sensations that can hardly be described yet my cardiologist agrees. Everyone is their own person and how your nerves and their reactions lay out are as individual as fingerprints.

Not all dysautonomia are POTS. I frequently have numbers similar to yours. I see an EP and he tweaks my meds about every six weeks. We are trying to raise my baseline numbers so that when they do suddenly drop it is from a higher starting point to reduce fainting. Keep a diary of your numbers and sensations to bring to your next visit.

POTS isn't the only dysautonomia, there are many of them. My EP , with a wink in his eye and big smile, calls it my NeuroCardioVasuVagally thing. Once in a while my numbers do POTS-like jumps, but generally not. I I get Drop Attacks--fainting and remaining conscious for the reset. Arrrgh. Over the next few weeks and months your doctors are going to tweak your diagnosis along with your drugs to find the best management that works for you. We are all so very unique that there really is no one-size-fits-all drug or treatment. We don't use drugs to raise my BP, instead he ever-so-slowly took away drugs that were lowering it too much. I saw him a few weeks back and it's the first time in over a year he didn't tweak my drugs--not many left because I do exercise and eat right which is a huge part of management. I certainly understand your frustration but it can be a bit of a bumpy road for a while until you get your meds and management worked out. During this time be kind to yourself and acknowledge that it's trial and error and you are on the way to being the best you can be.

I have a script for low-dose 2mg valium. When I can't stop the sensations I start with half a pill which usually works well at toning everything down. If I take the full pill it's nap time. But that's sometimes good too. Feel better soon.

I will PM you.

Would you be willing to come out to Long Island?