Chronic Intestinal Pseudo Obstruction .... Any one else experience this -

My daughter is 16 years old and been dealing with GP/CIP for her entire life. She is a vibrant, smart, funny and has a contagious smile. She went into a bad episode about 2 1/2 years ago and during that time has spent 160 nights in the hospital and numerous (too many to count) ER visits. Since she was born she is in constant pain (lowest on the pain scale 5) Her GI (which has been her Dr since she was 8) said he wanted to schedule her for motility tests again (the last time was between the ages of 3-5). It has been over 6 months and we have found - her esophagus, small intestine and large intestines are non-functioning. She just had a lower Barium enema study and I was shocked to see the screen. Her large intestine looked like a balloon animal - it was redundant and it stretched so big - it was the size of a baby. The Dr doing the X-Ray said her intestine is stretched as wide as her pelvis. They inserted 2 gallons and it stayed in the huge stretched out area.
No wonder she sometimes does not go the bathroom for 30 days.
This testing was horrible for my daughter to experience but we are able to see what is really happening (or not happening)
I guess the silly people that thought she or I was suffering from Munchhausen ....(again)
should see her X-Rays or better yet just live in her pain filled shoes for a few days .....

If anyone out there has a similar experience or can add to any of my questions - please post -

Oh another thing to add - miralax does not work on her any longer -(I guess too many years)
Enemas dont work on her - from top or bottom -

Here are a few of my questions for the Surgeon on Wednesday
1. Can it rupture ?
if partial removal -
how much will you take ?
how much will you leave ?
can the same thing happen to the remaining intestine ?
If so - how can it be prevented

Thanks everyone -

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partial resection wont do anything. there are studies saying that an ileostomy yields the best possible results in children/ patients with CIPO. i can confirm this.

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yes a massively dilated colon can ruptur which alost happened to me

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An ileostomy does make a big difference in dealing with CIPO. I had ileostomy surgery 27 years ago after three resections of my colon. It was the best decision I ever made. You can learn a lot more about adjusting to and living with a ostomy by going to the "ostomy" site on Team Inspire, and checking with the Ostomy Association. I wish you luck in finding answers to your daughter's problems. Welcome to the group.

Take care and God Bless,

BonnieKay

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I suffer from the same thing... but not any more. My colon became totally atonic after a procedure to insert a cecostomy tube so that I could flush out my colon from the top (cecum) instead of enemas from the bottom (rectum). Well, that did not work at all. I was hospitalized as I had not had a bm for weeks. In the hospital they filled my colon from the top and bottom with enemas, soap suds, PEG (orally) and any other laxative that is on this earth. My surgeon eventually said that there was nothing more that he could do and as a last resort I had a total colectomy with ileostomy formation. When removed my colon was twice the size it should have been. Dialated and floppy. Recovery was a nightmare, but now that I am home I don't have to worry about whether I am going to poop today or not. Living with an ileostomy is challenging and I don't think I have even acknowledged to myself that it is going to stay. I am only on day 16 post-op so I need to give myself some time to heal.
The great thing is that I NEVER have to be in bowel pain again. I NEVER have to use enemas or manual disimpaction. That in itself is such a relief. I am still dealing with post-op discomfort but thank goodness for Tylenol and Advil, and a good heating pad. Please reassure your daughter that even though the procedure is difficult it also provides some peace of mind.

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I am so sorry that your daughter is going through this. You will see on this site that a lot of us have almost the exact same problems. I was born with mine and I know what your daughter is going through. It takes away your childhood and make teenage years very difficult. The wonderful thing for your daughter is that GI doctors are more familiar with these issues and advancements are being made; unlike when a lot of us were younger. Don't give up hope. It may seem like forever but advancements are being made every day.
You seem like a very wonderful mother. It really sounds like you want the best for your daughter. Some parents are not as wonderful. Some people do not understand, because if they have not experienced the pain they are not as compassionate. So many people take going to the bathroom for grant it. Of course my parents were wonderful too.
I agree with everyone here. I had an illeostomy after an infection from my subtotal colectomy. I had megacolon also; did they tell you that is why her colon is ballooned and elongated? Anyway, I felt the best I had ever felt in my whole life. At that point we didn't know I had GP or my small intestines weren't functioning normal. I had a reversal6 months later. The nightmare began again. It is very disappointing when you have had such major surgery and it all comes back. I wish I hadn't had the reversal. I may get another illeostomy again one day, but since I have Adhesion related disorder they do not want to do surgery until it is LAST RESORT. That is kind of what happened before my colectomy. Please don't wait if this is what she needs. I did and I got Intestinal Prolapse. That is the worst pain I had ever had. I thought I lived in excruciating pain with my colon problems but little did I know it could get worse.

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Thanks everyone - We met with the surgeon yesterday and she is being scheduled to have the section of large intestines removed - The Dr wants to try this first and my daughter is all for it. I was being done if this does not help then a ileostomy can be done at a later date..... Goodness I wish I was the one with these issues and not her.

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