Post Colectomy Update

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psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 6/24/2011 6:55 PM (GMT -6)   
Hi everyone,
I was on here a while back because I had a total colectomy with ileorectal anamostosis (sm. intestine attached to rectum). Things have not gotten better for me, but much worse. I was just recently diagnosed with Fibromyalgia and will be starting meds soon. I have one problem, I cannot digest anything in pill form and take my meds liquid. Even worse, I am now unable to eat regular food and have been living on baby food. DEspite my food intolerences, the past year was heck for me. My G.I. issues went from bad to worse, and had countless visits with numerous G.I. who found no tissue problems or illness. I was tested for Crohn's and Celiac and do not have it. It is a nerve issue, but they are saying that even with my Fibromyalagia, which is known to cause such things, it usually is not that sever when it comes to G.I. I have had severe diarrhea and anything, even bulky foods go right through me to where I also have a anal fissure for ever, which has gotten worse. There was even talks of being put on Total Paraenteral nutrition for many months, but I am trying to avoid that. I am eating baby food because there is no hardly no fiber that would cause me to go to much, and it is small and easier for me to digest, though I still have diarrhea. Yet, with the baby food, I only go 10 times a day, and not 50 with regular food. I have gone on and off where I would do baby food, then after a while to regular food, but I would just get more worse when I do go back on regular food,and i even do it very slowly. Now, I am just dealing with that I will be on baby food for a very long time. I hope all of you are doing well and I am so very thankful for your support.

Maya
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis for slow transit constipation: Aug 7, 2008
Numerous food intolerances
Now struggling with worse stomach, diarrhea issues, which are now uncontrollable.
Diagnosed with Lyme in 2009.
Diagnosed with Fibromyalgia and tremors in 2011

Post Edited (psygirl6) : 6/24/2011 6:05:49 PM (GMT-6)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 6/24/2011 10:01 PM (GMT -6)   
Just out of curiosity, Maya, have you been tested for any kind of bacterial infection in the colon? I know you probably have, but I was just curious. When I get an intestinal bug, everything goes thru me very, very quickly.. diarrhea.
CD diagnosed in 1979. Ileo in 1984. No recurrence of CD! Some issues with adhesions still.
Husband diagnosed with ALS (Lou Gehrig's Disease) March 2008 - taking one day at a time, enjoying our time together.

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 6/25/2011 10:35 AM (GMT -6)   
Actually I was tested for everything under the sun. Not structural issues, no tissue issues, no Crohn's, Celiac, illnesses, bacterial infection, nor H pylori. Every test showed nothing. I even went to a G.I. specialist in Boston and they found nothing. I started having tons of bone and muscle pains for a while, which have been so problematic that I went to countless doctors. I also had Lyme disease in 2009, but the lyme is no longer in my blood. But the muscle, bone, and widespread body pain, fevers, and sever fatigue still exists. I went to a neurologist and a chiropractor who did X-rays. Though there was nothing pathological, but the cervical bones on my neck were backwards, but that did not explain the other pains all over every bone and muscle. Then the neurologist did their test and found no neuropathy or tumor or other things. Due to the number of symptoms I have been having, a ton, I was diagnosed with Fibromyalgia. I look at the Fibromyalgia symptoms and they fit me to a tee. I have all of them. I also have been having severe tremors, balance problems, and other issues for the past few months that have gotten worse. The past year I developed too many symptoms, but I still keep trucking, as they say.
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis for slow transit constipation: Aug 7, 2008
Numerous food intolerances
Now struggling with worse stomach, diarrhea issues, which are now uncontrollable.
Diagnosed with Lyme in 2009.
Diagnosed with Fibromyalgia and tremors in 2011

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 6/25/2011 10:41 AM (GMT -6)   
I also forgot to mention that I have been having the same diarrhea for the past 2 years. I never have regular movements and was put on every medicine under the sun, but none of them worked and actually made me worse. My neurologist is suggesting a functional problem with both the muscle and nerve issues. I can only have liquid medications, as pills, powders, tablets, and everything goes right through me. It is so bad that since last summer, I have an anal fissure that has worsen. I have found that the baby food I eat has no fiber, and does not have any potential allergens that I suffer. It has worked so far with only up to 10 movements (still runny) a day, as opposed to 50 a day with regular foods, even if I ate and reintroduced them very slowly. I went to a nutritionist a few months back who wanted to put me on total paraenteral nutrition, but I am avoiding that as much as possible.
Thank you again for the support. I really appreciate everything that you all do for me. I am just now going to see what the Fibromyalgia specialist has to say, but even with that illness that can cause G.I. problems, but mine is so severe that even fibromyalgia could not do that much damage.
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis for slow transit constipation: Aug 7, 2008
Numerous food intolerances
Now struggling with worse stomach, diarrhea issues, which are now uncontrollable.
Diagnosed with Lyme in 2009.
Diagnosed with Fibromyalgia and tremors in 2011
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