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Maxine

Neep Help---i Find This Hard To Believe...

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Hi,

As you are aware, I have classical EDS with joint hypermobility and vascular involvement. Yesterday I went to the "mall". what a dumb mistake----I KNOW! Anyway I usually only venture in one wing of the mall, as I have trouble making it accross the mall to any anchor stores. Well, I wanted to get one of the gifts for the family gift exchance done, so I went to JC Penny. I figured it's just one store, and I felt decent enough pots wise to try.

I felt half way decent about 2/3 of the way, but started to feel the gravity, and had my usual balance issues, but to a milder degree, so I kept going. The place was a mad house, but I didn't have to wait long in line as they had a lot of help. Only one person in front of me. During this time I felt like my back was splitting right in the middle, and my arm was killing me near my elbow just from carrying one bag-------(I asked for a bigger one to put my coat in.) My husband usually carries my coat, and ALL the packages, and I don't venture out on my own for this type of shopping.

In the morning my guts were bothering me a lot, SLOW GUTS AGAIN! Anyway, I thought lying on my stomach would help, so I went to lie down on the floor. I find this difficult to believe, but could my ribs and middle back be hurting so much just from this? It felt like my gall bladder was going to blow, but the pain was more in my ribs. I was trying to think of what I did----then I remembered lying on the floor on my belly, but only for a few minutes because this is rough on my neck to turn my head to the side in that position. WHAT AM I, MUSH?! IS EDS this bad, that it can cause such a lack of support that my ribs would kill me from lying on the floor? This happened before, but didn't believe it then.

The day of my son's wedding I had to wear dress shoes to go with my dress. I couldn't believe the pain from wearing them only a couple of hours. My feet have problems---(the tarsal area is really loose). I don't know much about how much EDs can affect this area. My EDs doc did recommend a podiatrist, and talk about some kind of fusion possiblity down the road. Meanwhile I am avoid my clogs, and wear shoes that tie up, or cover my whole foot. This does help out, but not completely.

Yesterday my CCI (cervical/cranial instability) was acting up a lot also.. I felt this area subluxating several times. I KNOW! This is really going on, and I dont know how I appear to be so well----especially with thse guts acting up so badly. How can a person only go to the bathroom once or twice a week, and it's never a normal amount-----sorry for the details--- ;) I'm just sick of this! Are my intestine so stretchy that they don't sense they are full until they are overly full? I'm so sick of being bloated 95% of the time. It's almost a freak accident for me TO go. Miralax doesn't work------it just turns everying to liquid, and it sits there just the same. I have to wear pants that are too big to be comfortable----but i'm not really comfortable anyway.

I want to go shopping for a new outfit to wear on Christmas Eve, but hate the thought-------------my bowels control my life. I have a gastro doc, but he's afraid to do a colonoscopy due to my extreme sensitivity to drugs, the apnea, and POTS. I went to see my brother's surgeon who does his colonoscopies, and she is contacting the anesthesiologists in the hospital she will do the colonoscopy at. She also was concerned about the EDs, and said my bowels are more fragile, and said the bowel walls are weaker. After finding that I have 3/4 of my large bowel with diverticuli, she aparently did some of her own research, because she knew more then the last visit with her. She did the lower GI with Barium last year to avoid doing the colonoscopy, but the doc at NIH feels I should have a biopsy because the diverticuli is so excessive. She believes the EDS has something to do with this, but also felt I have inflammatory bowel problems, and wants a biopsy.

Does anyone else with EDS have problems with thier bowels like this? I feel like I'm falling apart.

If only I could get my bowels to work for the holidays, and I can actually feel like there isn't a bowling ball in my abdomin.

Maxine :0)

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Thanks Pat57--- ;)

It might come to that, but hate to start taking anything fearing I'll become dependent.

IF I'm bad during the holidays, I'll have to take something. Back in the beginnning dr. Grubb's NP---(not bev) said I should take senokot-s. She said start out with just 1 tablet every three days. It did work out well, and kept things moving enough. My bowels started working better for a while after that, and they have times when they work now.

However, most of the time I struggle------------------I don't know if it's neuro related, EDS related, or what....... ;)

I hope some day I can feel better in the gut, as this is really tiresome.

Maxine :0)

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Thanks Ernie ;) , but that messes me up too. ;)

I think the structural problems I have in both the small and large intestine are partly the problem.

Soluable fiber works better, but at one time--(several years ago) metamucil worked out OK, but was a bear to keep up with. It felt like I swallowed a bowling ball after taking it down, and it would sometimes stick.

Maybe I can try the citrucel again, that has help out in the past.

I have a gastro doc, but he is spooked by my other issues, and afraid to use any type of sedation for GI testing, so I have to go another route with my brother's general surgeon who will do gastro testing. The one diverticuli in duodeum/small intestine is 5cm which is considered a very large one, and it has acted up causing some fat stranding and inflammation.

I think heavy fiber has difficulty passing through this part of my small intestine.

Right after my loop recorder was removed, and I left recovery, I asked my husband to buy some yogurt for me because I needed something quickly because I was so shaky. For some reason this doesn't help me with gut issues, and it seems to make things worse. I don't understand why, but this happens every time. My bowels feel paralized.

I belong to an EDS web site, and a lot of them have the same kind of trouble.

Maxine :0)

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Hi,

Sorry, I don't have much insight from the bowel discussion aspect. So, is it like a combo of gastroparesis (ANS malfunction) and then EDS causing too much elasticity? I wonder if they do things like botox etc. to help with issues like that? And it likely wouldn't be helped by a gastric pacemaker either? Other meds? Foods to stimulate digestion? Exercise? Not sure...

Did want to ask if your gall bladder had been fully examined (beyond ultrasound), because I have heard from Bev etc. that people with dysautonomia tend to have dysfunction of the gall bladder that is not seen via ultrasound, and that most of us have it to a degree.

Also, I have to say I totally identify with wearing anything beyond my normal shoes with good support, wrecking havok on my feet. I wore shoes with little support, thick wedged soles, and plenty of room in them... so not even spikey narrow heels! But, 2-3 days later my feet are still sore. Also, I kept have my ankle go out and my foot would fall sideways while wearing them, I came close to twisting my ankle like three times. So frustrating! I could not wear heels on a daily basis! ;)

I hope that you can get some kind of relief soon!

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A non-med alternative for you might be mangesium citrate(powder). Regular magnesium may do it, usually when you take magnesium they say to take it to bowel tolerance. I take magnesium because I have low magnesium, but certain types are not so well absorbed so they go to your bowel and can produce loose bowels. I take oral mag(taurate-it's better absorbed) but I also take a mag product called Natural Calm. It's a powder that you mix in hot/warm water, it fizzes and you drink it. I, 99% of the time have a movement the next a.m.(after taking it at night).

My mom has issues with constipation and when she started to take it it helped her. You can follow the directions and work up to bowel tolerance.

Just a thought.

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Maxine,

I can totally relate to the bowel issues. I've experienced months at a time when mine simply froze. I've been through Zelnorm which worked for a while, then stopped (no longer available) and I had the same experience with Amitiza. I have found success, however, with Miralax. Like you, it turns everything to liquid which I need in order for it to make it out, as my bowels don't seem to contract properly. You say with Miralax things still sit there... I'm wondering what dosage you've been using and how regularly you've been taking it? I take at least 2-3 full doses a day (all at once) and I take it religiously. If I skip a day, I'm in big trouble. For a while, I was ending up in the hospital with obstructions on a regular basis. My GI finally told me that I could take as many as 6-8 doses a day if I needed it. I thought he'd lost his mind. His other suggestion was a twice weekly colonoscopy prep. No thank you!

Once I figured out the amount that worked for me.....I am as close to normal as I can be. Remember, plenty of fluids, and a cup of coffee in the AM doesn't hurt either.

Best of Luck-

Julie

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Something else you could try are glycerin suppositories. Even with Amitiza, I can only "go" once a week. I use a glycerin suppository about 2 times a week to help keep things moving. Like you, the problem isn't necessarily constipation like normal people experience. The problem is that my bowels just don't move on their own.

Another thing that helps me is Pringles or Lays made with Olestra (the fat-free kind of chips). Olestra is an artificial kind of fat that can't be digested. It keeps the stool soft, but I do still need Amitiza, fluids (of course!), coffee in the morning, and glycerin suppositories. I know it sounds crazy to eat fat-free chips daily, but it works. This was recommended to my by my POTS doctor, and it is the best over the counter treatment I've had.

Even with all of these treatments, I'm still not normal, but I'm as close as I can be.

I hope you can find something that helps.

Rachel

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Thank you so much for all your responces, I really appreciate it.

Rachel, I have heard of that with the Olestra---lol. It does work! I have eaten these chips for that reason before, but it doesn't work very well anymore. I also don't like the after taste. They taste really good at first, but then I get this film on my tongue. I love real chips---lol. I don't buy them unless company is coming over who can finish them, or we're going somewhere.

My guts are just not getting the signal to move----- :)

Thank you for all your suggestions, maybe I'll just try taking more of the miralax Julie--- <_<

It works well for my Dad when things get off kilter for him.

Maxine :0)

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