please anyone! i need help!!

i have been dx with crohn's for 8 yrs now (i am a 35 yr old woman) and know i have had this disease most of my life but was always told i just had a nervous stomach.  i even had my gallbladder taken out during a one time episode where it inflammed, sent my liver enzymes through the roof, and the intense pain was intolerable.  since the cholesectomy (laproscopic), i had every crohn's symptom you could name right down to the skin eruptions and joint pain.  now, it's been over 3 years since they removed 2/3 of my lg bowel and some terminal ilieum. after 6 months of torture with acidic stool in my rectum 24-7, daily incontinence and being unable to keep any solids in my system, they ended that suffering and did the ostomy surgery. What that did was end the rectal irritation and i was immediately grateful for that, but ever since I am still left with what i refer to as a G-I tract that works like a waterslide.  I literally can eat something colourful and it will be in the ostomy within 20 minutes.  Some medications absorb in small amounts if I crush and swallow with a chewed up cracker or another "hit or miss" attempt.  But the volume of liquid stool, and the odor, is like nothing I have ever heard of or seen in my life.  It is unbelievable to me--that a person barely over 100lbs can fill an ostomy pouch every hour (or more) without eating anything.  I have been taking "Peptamen" for nourishment since 8 months after the ostomy surgery when a stich that had come out days after the surgery and would not heal--they decided a NG tube feeeding diet may help me heal from the inside out--it worked for the wound, but I am still in this situation where if i even attempt to eat something it is out of my system within 1/2 an hour and the unbelivable cramping and spasms I have are scary to watch.  It's like a fist is coming out of my stomach and it rolls around and the stoma shrinks inward and turns ash colour.  I try to keep positive, I try to keep a sense of humour, but I am so tired and worn out and I just want to have a normal life again.  I can't forsee that at this point and it scares me to think that way.  I've never lost hope before and for me to be thinking this way is not at all my nature.  Any time I had a really bad day, I knew the next would be better.  Now I worry all the time that it could get worse, or that I could actually never bounce back from this and my 12 year old son will only know his Mother as being sick--all the time.... Nobody seems to know what is going on and I've seen so many Doctor's.  Is there anyone else out there with this problem?

[joe19]

I haven't had that problem, but I do have an ostomy. I'm sure you've probably talked to your GI about this, mine told me that if my output was higher than about 1200cc/day to let him know. I don't know what he would have done then, but it seems that yours is much greater than that. I can relate to the feeling that your child will never know the "real" you though. I have been so sick ever since my daughter was born, and I feel so sad that she doesn't know the energetic, fun parent I used to be. I'd love to be here to support you in anyway I can though, even if its just to listen.

[Kerry30]

"I just want to have a normal life again."   Hello cjmacell I have read your post and would like to know if you were interested in doing some research. I have done my research and I am most certain that if you do, you will soon be able to testify that you have seen some improvement.

[Tuffy4u]

Hello Poor Dear, I can so relate to everything you are going thru. Right down to the concern of your children not knowing the Healthy you! I hate this for you. I have been thru the ringer. I had Colitis for years and then it turned into Crohns. I live with unbelievable amounts of lost blood in my stools every day for several years now. It hasnt killed me but it does have me down farther than I have ever gone before. I know that this doesnt help you but I wish you the very best. Keep a journal and have a great GI Dr. and pray and ask loves ones to keep you in their prayers. I am sure they will tell you that they already do. Take a lot of good care and get plenty of rest. When I am too sick to do anything and cant sleep, I am so glad when I have a good movie to watch to take my mind off a little bit of what my body is going thru. Peace