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For some strange reason I thought this would get better and eventually go away. I am finding that is not true. I seem to be getting worse. I slept ALL day yesterday and still feel like I have no energy. Slept through 2 doses of my medications (oops). I have no energy and my belly is so bloated and the nausea is almost unbearable. Where do we go from here?
Hi Camio,
I am sorry to say this but we go thru the same thing day after day until we find what works for us.. I to get so tired some days but i know that maybe the next day
will be better and when they are is when i get up and do things. One day at a time... The nausea and bloating comes and goes. I also think that when i do feel bad i will sleep or lay around and read or just watch tv and not feel bad about it..
Keep thinking good thoughts and know you will be better soon.
Take Care
Marie
After 3.5 years, a number of physicians, 3 trips to Mayo, and various meds and other intervention attempts... I think my psychiatrist says it best... "Stay close to those that can offer love and support, distance yourself from those that are critical or unwilling to offer support; and just take one day at a time."
I have seen my condition go from just pain after ingesting alcohol to having celiac sprue and GP (following both GP diet AND gluten-free diets), going on a liquid diet, to now not tolerating much of anything at all. I also have pseudo-obstruction of the small intestine as well, and neuropathic-type pain on my entire right side (even arms/legs/head/etc) and some on the left. I have 3 spinal cord stimulators to deal with the neuropathic pain, and now they will be putting in G/J tubes at the end of the month.
At this point, I am so malnourished and feel so crappy that I don't mind doing the tube feedings if it means I will get the nutrition I need to survive.
Megan
Hi Camio. I'm sorry you're feeling worse. This happens with gp sometimes. A lot of it is trial and error. You will find what works for you. Have you tried a probiotic for the bloating? When i was still eating a little, a dr suggested it to me and it did help me a little. And I know some people here do a stomach massage of sorts. If you search, I think it was mentioned fairly recently, you'll find a youtube link with instructions. I hope you feel better. michelle
Hi Camio. I have found that my fatigue is always worse on the days I have little to no protein. If you can find ways to increase that, it really helps. Ensure has a version that's 'plus protein' that I drink a few times a day (it has a yellow stripe on the package). Other things probably also have the 'plus protein' added. Check labels. Hope you are feeling better soon!
HI Cameo;
All of this is part of the process and like the others said you have to figure out what works best for you. I have not had any help from doctors or dieticians. I watch public broadcast TV and there is a cooking show on there called America' Test Kitchen. They have fabulous recipes on there. I decided to e-mail them and ask them if they could figure out a way to liquify some of those good looking recipes that we with gp could use in order to get the proper nutrition. I told them we were essentially starving to death as our food did not digest properly and it looses its nutrients before we do get it to go on. I haven't heard from them as I just e-mailed them yesterday. I told them there were thousands of us that were in this position and asked if they would help. Maybe if others emailed them too they would try to help us in someway.
Thank you all for your encouraging words when I am down! I am so glad I found all of you!
Yesterday was a good day. It was my husbands birthday and we had a BIG family BBQ for him. I was surrounded by so much YUMMY food, but I behaved myself (I know what the alternative is). I am determined to have another good day today!
Take care,
Cami
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