[Maegwin]

Tomorrow I'm seeing my gastro again. It's been nearly a month since the stitz marker test he had me take.

I could not complete the test because it got too painful. I have no idea what this gastro is going to say or recommend now. The first time I saw him he said I was doing great despite the fact that I was on a controlled starvation diet and unable to maintain an active lifestyle because I couldn't eat the foods I needed. It wasn't until I lost ten pounds and came close to being underweight that he took me more seriously the second time I saw him.

I have no idea how he's going to interpret the test results. I'm worried that he's going to say something stupidly useless again.

My only "treatment" I have right now is to not eat. Especially with the cold weather making my body even more sluggish. I drink lots of warm liquids, wear layers, use a heating pad, and I don't even go outside if I don't have to, but all of that only helps if I fast for a few days and let my body move out the food that's in there before I put more in.

I'll do more tests if the gastro orders them, even if they're horrible. Just so long as he keeps trying to help me find out why my body is like this.

 

[annie7]

cute picture!

good luck. keep us posted. hope it works out for you.

 

[IndianRopeTrick]

Hey meg, I hope I did not offend you with my private message. Anyway, I know from my past experience that eating can be difficult, but try having some soup, salads or breads if that works.

Don't keep yourself too hungry. Go for a short walk, preferably in a cheerful place to improve your mood and perhaps your appetite too.

Take care.

 

[Maegwin]

Thanks IndianRopeTrick, and no, you didn't offend me.

I learned from the gastro that Canada is getting Linzess up here in the new year. He wants to try me on it. He was about to leave it at that when I reminded him that I'm still losing weight because I can't eat often enough. I described my symptoms again and he suggested I try some physio for pelvic floor dysfunction.

He didn't offer any more tests and didn't even have anything to say about my stitz test. The hospital hadn't sent over the scans because I hadn't completed the test. They'd merely just sent him a short report saying "test incomplete" with no information. I was about to break down but then he said he'd call the hospital and get them to send over the scans. I just hope they still have them. The test was over a month ago.

So now I'm going to search back in this forum and find out all I can about linzess and how it works.

Annie you have pelvic floor dysfunction right? Did you ever do physio for it? Did you try linzess?

So I'm still left with not eating as my treatment until if/when the physio helps. The gastro warned me it might take awhile. I'm not scheduled to see him again until March. Then we'll see if linzess helps me.

 

[annie7]

Hi Maegwin

thanks for the update.

sorry the hospital didn't send over the scans. they should still have them though i would think.

yes i was dx'd with pelvic floor dysfunction and yes i did do biofeedback/physical therapy. and it did help me a bit--so that's good. also i can't say enough good things about my physical therapist. she was absolutely wonderful--- supportive, informative and so knowledgeable. from what i've heard a lot of people feel this way about their biofeedback PT's. i'm so glad you are going to be starting physio. you'll learn so much.

and i'm glad you're going to be trying linzess too. i know it has helped a lot of people. please do try it with an open and positive mind. you said you were going to search the forum about it and i know there is some negative feedback on the forum about it but please remember that often the people who try it and have success are so happy with it they just go on to live their lives and don't post about it. it's usually the difficult cases who are on health forums and post ....the people who find a solution often don't post anymore--they don't need to. so please do not allow yourself to be swayed by negative info. i firmly believe it's worthwhile to try everything and anything with a positive attitude--otherwise how will we know if it works for us.

here is a great article about it: one of my gastros is Dr Chey--the one in the article who did the research. he is an absolutely terrific doc--the best--and is very enthusiastic about linzess. he also runs the biofeedback program i took.

http://health.usnews.com/health-news/news/articles/2012/09/18/new-drug-might-help-treat-irritable-bowel-syndrome

and yes i did try it but unfortunately could not get it to work quite right for me. but then i'm a very tough case--lol--50 years of constipation problems plus i have mitochondrial disease. l. i did find that if i take it with warm food with some fat in it--instead of a half an hour or more before breakfast, as prescribed--that sometimes i do get quite a bit of diarrhea. some people have said it works better for them if they take it at night. or take it with miralax (movicol) ..or senna. it helps to experiment with it if need be.

i do wish you could find a way to eat more. and healthily. maybe consult with a registered dietitian --tell her/him all your problems and he/she could give you some advice on how to keep your nutrition up. it's very important to eat properly. i can't stress that enough.

good luck with everything. wishing you all the best.

 

[Maegwin]

Thank you very much for all of your feedback Annie. You're right about some of the people who post. Honestly, if my body suddenly started working perfectly I'd be too busy enjoying life to remember to post on here about my success.

That's a great article and explains Linzess much better. I like that as well as increasing moisture and inhibiting pain they do say it has a stimulation effect as well. I will definitely try it.

Question for you about the pelvic floor/kegel exercises. I noticed that most of them focus on clenching the muscles and even releasing and holding back your urine when you pee. Did your therapist show you some pelvic stretches too? Right now I have a lot of trouble releasing my muscles.

 

[annie7]

one of the pelvic floor exercises my PT had me do was contracting the muscles--but definitely NOT too tightly--for five seconds and then relaxing the muscles for five (or a little longer) seconds. and repeat--do this ten to fifteen times in a row once or twice a day. this exercise helped me the most and i still do it. it also can help to do this--tense then relax-- while sitting on the toilet if you get the "urge" but can't seem to get anything out--this helps relax the pelvic floor so stool can move out. also abdominal breathing helps with this too--belly breathing.

and working with the biofeedback machine and the sensor helps train those muscles to relax.

she also told me to try putting my feet on a footstool when sitting on the toilet--or even two footstools, one for each foot to allow for a wider stance. i'd already been doing that--i use a shoebox--the height works better for me. elevating the feet while on the toilet straightens out the anorectal angle and allows for a more complete evacuation.

and she had stretches for me to do as well--such as lying on my back and bringing one knee up to my chest and holding for 30 seconds. and another one that gets your legs in sort of a figure four--hard to describe.. stretches like this can help relax the pelvic floor muscles. and hamstring stretches too i'd already been doing all these for a couple of years. i have back problems and my back PT's had me doing them for my back..lol..

some people find sitting in a warm sitz bath helps relax the pelvic floor muscles. especially if you do it two or three times a day.