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  #11  
Old 04-15-2007, 04:19 PM
SweetSugarx SweetSugarx is offline
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Hi, I have Spina Bifida, and had surgery on my back when I was six to sort out nerve damage and things. However I can walk but not far, I have to use a mobility scooter and im waiting for an ankle replacement. I also had pins put in my big toes to straighten them but it was unsuccessful. Up until the age of six i had bowel problems so you can imagine how i still get teased about it, even now. my biggest issue is fashionable clothes, because i have a huge lump on my back, i have to wear bigger sizes and the waist has to be quite high too. I also put on weight quickly because I cant do much exercise, im limited to just swimming at the moment but i cant go very often. i end up depressed and over eating. i feel like i dont fit in compared to my able bodied friends who are slim, have flat backs, normal feet and just fit in better, and can do all the things id love to do. I know im probably being stupid but its something that really annoys me. for example i love horseriding but ive had to give it up because my problems have worsened. its hard watching my friends doing the one thing i called my life before. i cant even dance because of my ankle. i cant walk anywhere far. if i go to the shops with my friends i use my scooter. i then get funny looks when i get off it and walk round inside the shop then get back on it outside. people cant accept that i can walk still, just not long distances. people call me faker. then theres people staring at me when i go swimming because im overweight and have this lump on my back. its completetly noticeable, ive been titled a freak before, and also cripple. peoples comments really hurt. All i want is to fit in. Im not sure how i can achieve that though. im sick of trying to appear happy when im not.

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  #12  
Old 07-02-2007, 08:27 PM
Donna
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Hello Everybody,* I am 42 and was born with Hydrocephalus.* My first shunt was installed at 11 days old.** I have had numerous revisions over the years.** I am writing this forum because I have been fortunate enough to have two daughters, however, both have celiac disease (inability to digest gluten found in wheat, rye and barley).** Symptoms of Celiac disease are similar to the bowel problems some of you have expressed in this forum.** I have also noticed when I eat the same special food as my daughters, I have fewer headaches compared to the days I might have spagetti or Sandwiches or something high in wheat gluten the day before.* My sister also has Celiac disease and we suspect my mother as well.* Celiac disease causes the body not to absorb all the required nutrients out of the food so folic acid and iron deficiency is common.**

Does anybody else with Hydrocephalus have Celiac disease running in the family?* Does anybody else have "heavy head" days when the air pressure changes outside?* Has anyone else noticed if the "heavy head days" disappear if they avoid gluten and bread products?

I am very curious and am always looking for an answer to the question why.

Thanks



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  #13  
Old 07-10-2007, 01:59 PM
tbalsillie tbalsillie is offline
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Default Please help!

Hello Hi,*

I am*34 and was born with Hydrocephalus.* My first shunt was installed*about 1 month.* I have had two revisions since then.** While no one else in my family has celiac disease, my mother does.*

You asked about people with Hydrocephalus havingCeliac disease running in the family?*As I say, my mother does, but no one else. I do have* some*symtoms at teims when I eat too much of the dark breads, or have too much of the party drinks

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Thomas<BR><BR>-----------------<BR>Thomas
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  #14  
Old 07-30-2007, 09:10 AM
queenee1973 queenee1973 is offline
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Join Date: Jul 2007
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Default Please help!

Hi <br> My name is Debbie. I am 34 and I have had SB and Hydro since birth and I also have*****Scholiosis.<br> I have had the bowel probs and know exactly how it affects a socIal life. Recent************backpain has solved the prob lol(pain killers and not being able to go out.) <br> Thats why I came on to find email friends. My email is queenee1973@sympatico.ca.****Hope to hear from u all soon!!
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  #15  
Old 12-23-2010, 04:38 PM
Mak_Scoops
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Anyone who has sufferred with depression, can you please tell me that it will get better? I have been here before and ended up feeling better, but now that I am in the midst of it again, I cant see the light. Someone please help.
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  #16  
Old 09-20-2013, 12:56 AM
juniornoah juniornoah is offline
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Join Date: Sep 2013
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Quote:
Originally Posted by Mak_Scoops View Post
Anyone who has sufferred with depression, can you please tell me that it will get better? I have been here before and ended up feeling better, but now that I am in the midst of it again, I cant see the light. Someone please help.
It will get better if you work to improve yourself. Things aren't going to magically happen to you. You have to want it and work for it! I know you can do it. It is all about your own psyche. Write down your goals and keep them in sight.
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  #17  
Old 10-07-2013, 07:38 PM
misty7 misty7 is offline
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Join Date: Sep 2013
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Bowel management program has been very helpful. The program I use is tailored for me. On the program I do constant enemas, stomach x-rays, they follow a patient report to see the exact type of enema solution I should use that clean me out every 24 hours. I am constantly monitored. Right now I am finishing up the last of my stay and I see that I have gotten much better with retaining my bowel movements. I hope this information helps. Hopefully you will find something that will work well for you.
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  #18  
Old 01-30-2014, 05:17 PM
novasparker novasparker is offline
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Join Date: Dec 2013
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My nephew who has hydro, is 5 but has bowel accidents from time to time. He also struggles with constipation. I know that alot of people think his accidents have to do with stress, but he isn't in any situations where stress would be a factor. He's not really of the age where social stressors are really a factor, so while I think that stress and anxiety might have a role to play, I don't think that this is the overwhelming issue at hand. I know that my brother has him on some sort of fiber regmine and he often has to use laxative suppositories when he is constipated. I've heard that there is some sort of surgery that might help correct this issue....maybe this is the answer?
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