My 11 year old son was dxd with Crohn's Disease 3/06. His diagnosis was delayed because his presenting problem was encopresis due to constipation. 4 months after he developed severely bloody stools they finally dxd Crohn's. Following a colonoscopy and balloon dilation of a stricture of his ileocecal valve 4 weeks ago, his already significant constipation has become severe. He was hospitalized once for a clean out 2 weeks after the scope when he hadn't passed any stool for 6 days. We were able to keep him going once every 1-2 days for about a week and now we are back to one stool in the past 7 days.
He is on 5 doses a day of laxatives (miralax, enulose and senna) plus we started using ducolax suppositories 3 days ago and are up to 2 a day. Day one of the suppository produced no results, day two he was able to pass one small stool, day three we went to 2 suppositories and no results again.
His doctors here are stumped and don't know what to do. He is on a high fiber diet at this point (normally contraindicated with Crohn's), ultra-low fat, lots of liquids, as much exercise as he can tolerate and still nothing. They did a sitzmark study while he was at 4 doses of laxatives a day and it showed significant slowing throughout his entire intestines. It did not appear to show significant slowing in any one place. They are now suggesting he has rectal dissynergia and are looking at sending us 100 miles away for biofeedback training despite the fact that they have not actually diagnosed him with this problem.
He has 2 moderately severe anal fissures and his ped GI thinks this is part of the problem too. We are using Tacrolimus ointment and he said if there isn't significant improvement in two weeks (we've been unable to heal the fissures in 16 months) he wants to start my son on Infliximab, a drug that is used to treat severe crohn's disease.
I'm hoping by describing our situation I will find some other families or adults with similar problems and perhaps solutions. Right now his doctors in Sacramento, CA are talking about writing his case up because they have never seen another one like it.
Patricia
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!
chronic constipation and crohn's disease
Explore topics in this discussion:
Exercise MiraLax Surgery Crohn's disease Achalasia Encopresis Gastroparesis Bloody stools Anxiety Probiotics Constipation Delayed gastric emptying Lactulose Stress
9 replies
- Oldest first
- Newest first
- By carol1
- Posted April 25, 2007 at 9:06 am
- Report post
So sorry to hear of your young son's suffering! My son suffers from Colin Inertia. He was diognosed at Tuffts Medical Center in Boston,MA. by Alex Flores,MD. He is an amazing doctor. Parents bring their children to him from all over the world. It is important to get a definitive diognosess in order to properly treat anyone. If you can't make a cross country trip, I would suggest throughly researching MDs in your general area & go to the one with the best reputation. As you are aware, you are your son's best advocate.
- By Nancy1
- Posted April 25, 2007 at 12:22 pm
- Report post
Although I do not have the same symptons as your son and I am an adult I thought I might share an idea regarding constipation. I suffer terrible from the complications of constipation. I have found that if I make a pudding of organic whole wheat cousous with fruits and have it for breakfast each morning it helps facilitate bowel movements regardless of how many laxatives I am taking. I too have to eat a very high fiber diet that doesn't help me with other symptons, I wish your son all the best
- By valerie1
- Posted July 9, 2007 at 12:06 am
- Report post
I've had Crohn's since I was 8 or 9 and always had constipation as a major symptom. Now, at 26 I also have severe gastroparesis and small bowel and colonic delayed motility. Basically, none of my digestive track will move food through it which causes all kinds of problems. There are very few documented cases of delayed gastric emptying in Crohn's disease. This is the first one I have seen in a pediatric case like mine was as well. I would suggest going to a GI motility Dr. to see what can be done for this. I am also on remicade for Crohn's and gastroparesis. There is a really good motility Dr at Cedars Sinai in Los Angeles. Dr. Soffer if you decide to go there. Cedars sinai also has a pediatric inflamatory bowel disease center so it might be worth checking it out if possible.
Best of luck to you. You can email me any time my email is valerie_goldstein@yahoo.com
- By maddogrock
- Posted July 10, 2007 at 5:27 pm
- Report post
Hi Carol !
My son too went through many years of suffering !!! We FINALLY were referred to Dr. Flores @ NEMC - what an incredible man !! After multiple tests over quite sometime , he ended up with a C-tube and has done nothing but improve healthwise ever since !! We continue to check in with him and his nurse practitioner frequently . I have high praise for the NEMC staff in Boston .
- By cheryl2
- Posted July 11, 2007 at 5:39 pm
- Report post
Hi Valerie,
I can understand the frustration of your GI track not moving food through. At 8 years old I was diagnosed with achalasia and had my first surgery on my esophagus. I have slow gastric emptying and until recently did not know that 1 or 2 bowel movements a month was not normal. I am now 38 and have had so many surgeries on my esophagus that they were reduced to using a part of my colon because the nerves were dead. So basically, my smooth muscles of the GI tract are pretty dead to dying. I still have hope to be able to eat or at least take my meds orally. Hang in there.
Cheryl
- By Achilles_Heart
- Posted March 3, 2008 at 6:45 pm
- Report post
Hello, although i have no experience with Crohns disease, i understand to some extent what you are going through. My daughter is suspected of having CIP and sometimes it would take up to a week to unblock her. Her meds are much the same as yours. She started on Lactulose, Senna and Glycerin suppositories as needed, but these werent enough, she moved onto MOVICOL.. do you have this where you are? Its a miracle worker as far as im concerned. My daughter is on one sachet, but i know one child who goes up to the maximum dose when impacted (12 sachets). We also give her one ducolax per day and up to 3 when shes going through a bad time. However, theres only one thing that REALLY works when things are bad, and thats Micralax enemas, have you been prescribed them? Both the movicol and micralax are not for under 3's, but our Doc deemed them necessary.
- By megansmind
- Posted June 2, 2009 at 2:39 pm
- Report post
Although most people with Crohn's disease do not have constipation - it isn't as rare as you think. I was diagnosed with Crohn's disease a year ago and have suffered with CHRONIC constipation my entire life - sometimes without a bowel movement for SIX WEEKS. In recent years - it's not that I have been "constipated" in the traditional sense - I just don't EVER get the urge to go. I too did fiber drinks, miralax, ducolax, suppositories, laxatives, fleets, anti-spasmodics, and even enemas without much avail. The ONLY thing that worked for me was super aloe - a natural laxative and eventually the macrobiotic diet. Even then I was on a double dose a day. I developed melanosis coli because of laxative abuse. I put my crohn's disease into remission naturally - and eventually got up to 2 bowel movements a day. As soon as I returned to my stressful life - the bowel movements stopped. I think that sometimes with constipation - there is more than just food involved. Sometimes people EMOTIONALLY hold there stool inside - because of stress, nerves, anxiety, etc. You have to learn to retrain your bowel and I think it's important to look into the emotional side of things - especially if laxatives aren't working. Stressing over a bowl movement can also halt peristalsis.
For constipation - try 4 oz. of aloe vera and organic apple juice every day. Try magnesium. Get physical exercise - relax- and try some probiotics. Cascara segrada is another herbal laxative and I am a huge advocate of colonics. Also try to avoid dense foods which take a lot of water to digest.
http://megansmind-holisticwellness.blogspot.com/
- By dutchess
- Posted June 3, 2009 at 9:26 am
- Report post
I believe that constipation and loss of motility can sometimes be becaused by emotions and stress. This is exactly what happened to me. I just started to do emotional freedon technique. It's something that you can do anywhere and involves a setup statement and tapping on certain meridians of the upper body. It works for all kinds of problems and you can check it out on the EFT website. You can learn how to do it on your own or have one session with a trainer. I just started doing it and it will take awhile. I have no colon motility and live on enemas. We'll see.
- By megansmind
- Posted June 3, 2009 at 7:07 pm
- Report post
dutchess - I practice that technique as well and I think you are right on! I wish more people new about these methods.
Add to the discussion