Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Obstructive Pseudo Motility Disorder Please Help!

proudmom2x
0 Recommendations

Ok I am praying that I can find someone on here that may can help me know what is the next step for treatment of my daughter. My daughter is almost 5 years old and in August 2008 she was diagnosed with Neuropathic Obstructive Pseudo Motility Disorder. After 4 long years of doctor calling me crazy and making me want to give up and just make her live with chronic constipation and pain. I was so glad that I finally found someone to test her and find that something was really wrong. Well in Sept. 2008 Gracie had a cecostomy button put in. Ends up that a surgeon accidentally dropped a tool inside her and could not retrieve it. Well against our wishes he decided that he would leave it in there and it would pass he said. Well we kept telling him that she can't even pass stool what makes him think that she will pass a 6 inch dialator. Needless to say 4 days later it had not moved any and she woke up at 2 am screaming. At 6 she was rushed into emergency surgery with a perforated colon. They gave us a 50% chance that she would not make it. Well all that healed and she was recovering nicely. She had a cecostomy button to administer flushes. Well everytime we would do the gravity flow flushes she would throw them up so they put the flushes to where they are adminstered by pump. She still backs up and has been in the hospital 5 times since September. Once with 3 illeuses. She just got out of the hospital on a week ago from that. They decided to leave a Picc line in so that if we needed blood draws or ivs since her viens are so callused. Well that is our story bringing us to today. I took Gracie to the doctor because she is having severe doubling over stomach cramps everytime she eats. She is a good healthy weight but everytime she eats it is causing her severe cramps. I told him that and he once again put her on cramping medicine that causes her large intestines to completely stop while we are using it so I refused for her to use it and asked for him to do something else. He said that there is nothing else we can do that she is just going to have to live in pain and we are going to have to get used to it. We only have 4 pediatric gi docs here and none of them are specialized in motility. I don't know what else to do. We are switching to a GI doc that is 3.5 hours away but I wanted to go there prepared with stories from people living with this disorder and things that help them. I am asking begging praying for anyone who suffers from OPMD to please tell me your story and what helps. (gtube,jtube, dif formulas, cecostomy, illeostomy, etc) I would appreciate all of your help. I am praying that if I can go in there prepared with stories from people and other children living with this and things that help them that they may find something that will help my sweet little girl. I appreciate you reading and taking the time to do this and help my little angel.

Explore topics in this discussion:

Surgery Intestinal pseudo-obstruction Fentanyl Anemia Ostomy Constipation ALS Pain Valium Diarrhea Cortisol Chronic intestinal pseudo-obstruction

18 replies

daviandsteve

My heart breaks for you and Gracie. No child should have to go through everything she has gone through, nor be in so much pain. As a mother, I well know the helpless feeling of having a child with chronic medical problems - you'd do anything if it would make a difference!

I wish I could help provide you with stories about other children with Gracie's problems, but unfortunately I don't know much about them. My own problems are very different. I know there are other children in similar situations as Gracie, as I've seen the postings. Perhaps if you did a search you could connect with these families. There's a place in the top right hand corner of the main page of the forum where you can enter a topic and click on "Find it".

Also, there are about seven or eight intestinal rehab centers throughout the country, where there are specialists who really understand these kinds of problems. Perhaps Joan Bishop at Oley could recommend the right place for Gracie. I think the University of Pittsburgh is a good place for children with major digestive issues, but I'm not sure.

You and Gracie will remain in my thoughts.

Davi

Judi-1

What you have shared is very familiar to me, but not as a child. I have had chronic intestinal pseudo-obstruction for the bulk of my adult life. It has all of the earmarks of what you describe. Regrettably, it isn't a well understood illness and has been treated symptomatically as there is yet no cure. The pain is intractable at times, requiring the introduction of pain management ( a pain clinic could be very helpful to tailor the modality for Gracie). If I can be of any help, please don't hesitate to contact me. It is a very difficult situation for anyone...it involves the entire family. My thoughts and prayers are with you. Judi

whos_your_dolly

Have you ever read the magazine Exceptional Parent? You might be able to find other parents of children who have the same or similar issues as your daughter--Its an expensive magazine, but many libraries carry old copies, and you could find out how to submit a query from any of their issues and maybe other parents would contact you.
God bless you and your precious child
Marilyn

jweber5

Hi there, i just wanted to tell you that Landon is 3 1/2 and he has CIPO. He has no gut motility what so ever. We have been trying for over 9 months to get him to tolerate some form of feeds with no luck . We just underwent an open Jejunostomy surgery . This is the 4th surgery in a week we tried. The tube does not stay in place because of his chronic damage to his intestines and jejunum. However we are now considering the Roux en Y j tube surgery but we are gettinga second opinion first. Landon gets TPN through his central line right now. We also have a G tube that we drain bile from 24 hours a day, this really helps cut down on alot of his pain. The plan is to try to feed through the J and and drain through the G tube. The idea is for this to help relieve the pain, however we have yet to be able to feed, but i don know that draining from the G tube helps his distention and pain immensely. I know what you are going through as Landon goes sometimes 70 days before he will have stool, and it causes severe distention and pain for him.
I hope that you guys are able to find something that will help her! Hang in there!
Jennifer

janasowk

I have had Pseudo Obstruction my whole life. I was diagnosed at 2 months old and I have been fed via a central line for 24 years. I live a happy and productive life, even though i still struggle with all that comes along with CIPO. i have tried g tube and j tube feedings but TPN is really all that sustains me as far as calories go. the best advice i can give is to do what you are doing now, and fight for her and push until the doctors do something. Please email me if you have any questions at all. i will be praying for your family.

proudmom2x

Thanks for everyone replying. I am still fighting doctors. It does not help that our doc don't know much about this and won't send us to someone who does. I wish he would send us back to KS MO to talk with the specialist again. Keep praying this momma ain't backing down until my baby is good.

AlissasMommy

I have a 2 year old little girl that was born with multiple bowel obstructions. She lost 60% of her larg intestine, and 40% of her small intestine. She has been fed via central line since she was 24 hours old. She actually has enough small intestine to survive but she has no motility. Her G-Tube is used for draining her stomach contants because she will vomit otherwise. I have a wonderful G.I. doc who is working with me to attempt to enduce motillity. She is on two different meds one of which she just started last Friday. There are some options and I would love to talk with you.

proudmom2x

We have to tried meds with no success. I would love to chat with ya. My yahoo messenger is stewart72052 if you can get on there. If not send me a email.

charliegirl3

I had a daughter with the same problem she died in 1993 but we ended up giving her alittle molasses in her feeding tube and she would go regularly we also did crush up consipatition meds in her tube but those did not work as well. We worked with Mayo Clinic and they were really good about following up with us and her regular MD. Best of Luck.

chrissybird

Hey! I just joined this group and wanted to put my hat in the ring for any pseudo-obstruction folk out their and to the parents of Gracie. My son Oliver (5) has a myopathic form of PO, we have been treating it for about 4 years now. We're actually in the hospital today on our last day of treatment for a central line infection... going home after 3 weeks... yeah! Sounds to me like one of the key ingredients you need is a good doctor. It makes all the difference. I for months felt like a "man without a country" very isolated, scared, and alone. It was a beautiful thing after moved and had to go to the hospital, and the nurse said, "pseudo-obstruction... oh there's a little girl 3 doors down who has that too."

Ollie is our hero through all the pain, pokes and prods, and the unpredictability of this disorder. He has a (new) central line, a g-tube, and ileostomy. The ostomy he had put in when he was about a year and a half old... made a HUGE difference in his pain and discomfort. The g-tube we vent when he feels sick, and the central line is for TPN (he has been on daily for about 2 years) has saved his life many times over, even though we have to deal with the frequent and sometimes scary infections.

As he's gotten older life has seemed to become more "normal" and we can enjoy being at home with our other two wonderful kids.

Well kindergarten will start week after next for him and we'll see how that goes...

If I can be of any help, let me know. I know how alone this illness can feel, but a positive attitude, and a tough "Momma Bear" can make all the difference.

Good luck to you and your family!

LindaRose

I just read your post today, or I would have replied earlier. I hope things are improving for your daughter. My daughter Becky also has pseudo-obstruction. She was constantly in medical crisis for years until she began receiving all of her nutrition from TPN via a central line. However, the constipation remained a huge problem, as well as unremitting, excruciating daily pain for years & years. No-one was able to find anything to resolve her pain. Even a highly respected pain clinic was absolutely stumped.
I was particularly interested in your mention of the cecostomy tube, and the difficulties your daughter was having with it. My daughter also was given a cecostomy tube, and it failed miserably. We were unable to get the enema solution to flow through gravity, so a continuous drip via feeding pump was tried for her also. This failed as well, because the solution simply backed up into her small intestine, triggering significant distention, massive pain, and a volvulus. The tube had to go. The surgeon who placed it failed to recognize the extent of her motility disorder. I know several children for whom cecostomy tubes have been highly successful, but they all have at least some motility in their colon, however impaired. Becky has absolutely no motility in her colon, so there was no way the enema solution could be propelled through the colon to help empty it out. Eliminating all food & enteral nutrition has been the only way to reduce her production of stool in order to minimize the extent of the constipation issue. An ileostomy is planned, but she is too frail at this time to undergo the surgery.
However, she has been pain-free since last September! This was an incidental result of treatment for another condition that she developed. Her adrenal glands hemorrhaged last summer due to a severe fungal blood infection. Adrenal glands produce the hormone cortisol, which is required for survival. It was essential to put her on intravenous hydrocortisone, which is an artifical form of cortisol. This drug was effective in addressing its intended goal of supplying her needed levels of cortisol, but it had an unexpected and greatly beneficial effect on her pain. She has had no pain at all for the past year, and it is absolutely amazing and gratifying to see her suffering stopped. No doctor wants to put a person on hydrocortisone unless absolutely necessary, as it can have severe complications, including suppressing the person's remaining production of cortisol, as well as causing severe suppression of the immune system. Nevertheless it has been a tremendous help to my daughter, and we must try to manage the risks as best we can. I would do it again in an instant, and if I had only known it would eliminate her pain, I would have demanded it years ago.
I hope your daughter does not have these difficulties, but I would truly have appreciated knowing these things before my daughter's condition worsened to the point it did, so I could have avoided unecessary life-threatening risks, and could have helped her minimize her excruciating pain much sooner. Keep this info on the 'back burner' so-to-speak, should you ever have need of it, and I hope you never do. If nothing else, know that you are absolutly correct in seeking/demanding a GI specialist who is knowledgeable in treating this condition (not all GI specialists are, so check them out). A doctor who is only a little knowledgeable in this area may initiate treatments that complicate your daughter's condition, and our kids cannot afford trail & error approaches to managing such a complicated illness.
If you would like, I would be happy to talk with you directly, and can be reached at linda.till@rogers.com. Best of luck, Linda

shan789

My son did the same thing after he had his cecostomy. We discovered that it was the soap we were using in his flush. Once we changed the soap and added a fleets to his flush 2x a week he is doing so much better. He has als been dx with eosinophilia to. That is what was causing all of his vomiting, nausea and stomach cramping.
I hope you find out what is going on soon. Have you tried contacting Dr. Marc Levitt at Cinncinati Childrens Hospital? You can get his email, he will email you back.

shan789

I forgot there is a yahoo group that might help it's Hirschsprungs_Support_Network
This is Hirschsprung's Motility& Disorders Support Network hirschsprungs.info.com

chrissybird

It seems evidently Cinncinati Children's is becoming the place to go for motility disorders. We haven't been there yet, but have had great care at Boston Children's and here at UNC Hospital in Chapel Hill. As far as pain, I think the g-tube is the best help. Ollie got his when he was not stable enough (and his intestines were to distended for) an ileostomy. And when he's really uncomfortable he just says, "do my tubes" and I can empty his stomach and he feels so much better. I've had differing opinions from doctors about his ostomy, some feel it's unnecessary. But I feel whole heartedly that it has made a HUGE difference in his quality of life. I HATE the stigma attached to it. When you get used to it (which doesn't take long), it's a beautiful thing. Especially when your living from enema to enema.

I hope things are improving, we're out of the hospital now so they are for us!

vaw2511

HI,
My daughter had been dealing with pseudo bowel obstructions for over five years as a result of emergency surgery she had at Children's Hospital in Denver. After the surgery, a wound infection developed and then she de-hissed. Since that time, she has had multiple surgeries to remove adhesions and of course has been unable to eat so has been on TPN. About six weeks ago, she started to vomit green bile and have green diarrhea, usually a sign of an obstruction. As the tests did not show a defined blockage, they have classified her as a mechanical pseudo bowel obstruction and have told us they won't operate again. After spending 5 weeks in the hospital, she is "beat" down emotionally, in pain of about a 7 out of 10 with a 75 mg fentanyl patch, she is on 20 mg of valium IV and 30 mg of Toradel (sp). Some days she is only somewhat conscious, I am really frightened!
The surgeons agreed to consider surgery only if we went home for a couple of weeks to try and see if she would '"improve" instead of improving, the pain is worse, she is developing anemia and now she wants to die because of the pain! Unbelievably, just 6 weeks ago her doctor thought she looked better than he had ever seen her! Any help or ideas would be greatly appreciated! Vicki

proudmom2x

Keep your head held high and fight for that baby. I would suggest a cecostomy button but if she is on TPN she should not be obstructed. My daughter is not on TPN so I really don't know. I know the pain is not only hurting her but it also hurts you to see her go through this pain. I will pray that they do something to help. I wish I could help you more.

proudmom2x

Also I would think they could remove her bowel and that would probably help with the pain but I don't know. Does it affect her small or large bowel or both?

oleyfriends

The staff at the Oley Foundation know of other families with children who have motility disorders. Feel free to call the office (800-776-OLEY) to get some other parents to talk to.

Also, I would recommend getting in touch with AGMD -- a non-profit group that deals exclusively with patients with motility disorders. They have a chat forum, just like this one, on Inspire also called "AGMD GI Motility Disorders Support Community
Association of Gastrointestinal Motility Disorders"

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Helpful links from the Oley Foundation

Group leaders

You