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Crohn's Disease
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Posted 1/17/2011 5:10 AM (GMT 0)
Hi everyone...

I am on here seeking answers. My 6 yr old son suffers from severe chronic constipation. I mean he has gone as many as 45 days with no BM. This to me is serious, but the doctor's seem to think it is normal and i totally disagree. I am very frustrated and my son is suffering. He can't live a normal life, because he is always in pain.

Here are some of his symptoms, anyone on here that has any suggestions, please post feedback.

He suffers from severe chronic constipation, pain in lower abdomen, fevers are rare, but do occur, and leakage. (i know that is gross).

So if anyone on here can help, I would greatly appreciate it. I have tried everything the doctor's have recommended, and nothing sticks. We have been hospitalized 2x in the last year and the last time they did an enema (800 cc's) and he still didn't go. He has been taking miralax everyday (3x's) within 30 min. intervals for the last 9 months and that doesn't work anymore either...

I am stuck at a dead end. The doctor's will not test him for crohn's disease or colitis or any of the other intestinal tract diseases. The only one they have tested for is hirschsprungs's disease (which was negative).

PLEASE someone has got to have some idea...

Thanks!
Posted 1/17/2011 5:19 AM (GMT 0)
Hi Kjones27. I'm so sorry your son is suffering so much with constipation. It is definitely not normal to not have a BM in 45 days! He should definitely be investigated for intestinal disease. There are some parents in this forum as well - they should be along in the morning to give you some better advice. I believe there is at least one other parent on this forum whose son suffered also from chronic constipation and it wasn't taken seriously by his doctors.

The only advice I have for you is to take your son to a pediatric gastroenterologist.

Hang in there! You have found the right place - I'm sure you'll get more useful information in the morning.

I just wanted to write and sent you virtual hugs.

PV
Posted 1/17/2011 5:24 AM (GMT 0)
Thank you for your reply... My son has seen a PI Gastroenterologist (2 different ones) who have also brushed this off as normal. It makes me so mad.

But again thank you so much for your incite.
Posted 1/17/2011 6:34 AM (GMT 0)
45 days..the poor little guy! for me it's been 7 or so. I would really try to find someone else who will listen to you and your boy.
Good luck with everything, and keep in touch.
Posted 1/17/2011 8:50 AM (GMT 0)
Hi there,

I feel your frustration and it makes me so angry when drs will not 'listen' to parents.

My son suffered with constipation although tbh nothing like for 45 days. In his case he was so 'backed up' that despite being starving he physically couldn't eat more than a mouthful or two. He also had regular pain in abdomen. Dr gave him things like Gaviscon for heartburn(he must of been joking!!!!)

Eventually(after numerous visits) and me re-iterating concerns over height/weight, pain etc he conceeded and did some blood tests and for us that was all that was needed to get action. He was referred to consultant and things have gone well from there.

I think if a set of blood tests could be done that will show up no end of things-whether inflammatory markers are raised, whether he is anaemic, deficient in any other area etc. If this is the case then usually it would be followed by a 'visual' as in a colonoscopy(biopsies could be taken too) and/or barium follow through x-ray if they suspect blockages.

All I can really say is keep pushing and don't doubt yourself! You know your child far better than anyone else and if your gut instinct is telling you something is wrong keep pressing for answers.

Hopefully Risnights will be along soon, she will be able to give you  more full on advice.

Hope you get a diagnosis(and correct treatment soon)

Posted 1/17/2011 1:23 PM (GMT 0)
Is it 45 days or is it supposed to be 4 to 5 days?  I would think 45 days, toxins would kill you.

In either case, Wow that sucks.

Have you tried anything like raisins, prunes, prune juice or Plum Smart to help?

Posted 1/17/2011 2:29 PM (GMT 0)
severe constip. can lead to major obstruction, if there is a problem as far as any gi issues, that is what happened to me. that is really sad for your little boy, just be careful and watch carefully, I don't think it is normal to be const. but probably normal to not go everyday, but to not go for days is not good, something is brewing inside.

Posted 1/17/2011 3:44 PM (GMT 0)
To all of the above when i put 45 days that is what i meant. not 4-5. Right now it has been since before Christmas. I am taking him to the dr. today and demanding that some blood test be done. I am going to have him tested for Crohns, Colitis.... anyone else have any other suggestions for the blood work. I have tried everything.... metemucil, miralax, prunes and prune juice, apples, raw veggies...

Still seeking answers....
Posted 1/17/2011 3:50 PM (GMT 0)
Oh my goodness I am so sorry to hear how your poor son is suffering. I agree its time to get mad, 45 days is not normal and could be very serious. My grandson who is 8 has been suffering with constipation too, but luckily the Miralax is starting to work for him now.

I suffer with more constipation than diarrhea with my Crohns and use stool softners daily in order to keep things softer and easier to pass. You might want to add those in along with the Miralax and see if that helps.

Hoping you get some answers soon and some relief for your son. Hugs!
Posted 1/17/2011 3:52 PM (GMT 0)
https://www.healingwell.com/community/default.aspx?f=17&m=2003032

This is a duplicate post of the other one you made. I am attaching your post and the answers here, so that more can respond.
Posted 1/17/2011 3:53 PM (GMT 0)
Nanners it was my understanding from the pediatric GI that miralax was a stool softener... Is this not accurate? I am taking him today to his regular pediatrician and demanding that they test for Crohns and Colitis... do you have any other suggestions for the blood work? I am not leaving that office until i have the blood work order in my hand. My son can't live a normal child's life because he suffers so badly... I am so glad that i have found this site and now know that we are not the only ones suffering... (as he thinks)
Posted 1/17/2011 3:57 PM (GMT 0)
No Miralax is a gentle laxative, and stool softners just draw water to the stool to make it softer and easier to pass. I would ask for a complete CBC, Sed rate or CRP. Those will at least show if he is anemic or have elevated inflammation markers. Just tell them this has gone one too long, and you will not tolerate being boffed off any longer. 45 days is not normal. Hugs!
Posted 1/17/2011 4:02 PM (GMT 0)
Thanks Nanners!!! You seem to really know what you are talking about! have you ever heard of "Diverticulitis" (sp?) and if so... what is it?
Posted 1/17/2011 4:10 PM (GMT 0)
A friend of mine from childhood (we are not still in touch so I don't have all the details, just what gets passed between our parents) daughter had a similar situation. She would go weeks without a bowel movement. The doctors couldn't figure out what was going on and just kept throwing laxatives and enemas at her. My friend would have to literally un-impact her daughter every few days just to make her more comfortable. Eventually they figured out that a section of her intestines was basically dead and would not push the food forward. She had to have surgery to remove that section, but has been relatively fine ever since. She is in college now. I don't know the name of the condition she was diagnosed with, but the surgery took care of it and she is a happy healthy young lady now.

I would suggest you get your son to the biggest teaching hospital you can, even if it means driving 4 hours. Get a second, third and fourth consult. It sounds like more than Crohn's or UC going on and your local doctors may just be way over their heads. But to not have done any real testing is gross malpractice in my opinion. You can not let a 6 year old suffer like that. Please let us know how you make out and how your son is doing.
Posted 1/17/2011 4:18 PM (GMT 0)
Yes I have heard of Diverticulitis. I have a niece by marriage, that is suffering with it. But its symptoms are very similar to Crohns. What it is is you get pockets in your colon and as stool passes it gets stuck in these pockets and causes infection to build up. My niece did not suffer with constipation, but more diarrhea and lots of pain from the infection.

I tend to agree with Zanne (post above) that maybe he might have a very sluggish colon going on. But also its important to rule anything else out, so push and push these doctors until you get you get to the bottom of this. Good luck to you both!
Posted 1/17/2011 4:20 PM (GMT 0)
Suzanne

Thank you so much... what you are speaking of sounds like hirschsrpung's disease... that is where the ganglion nerves do not function properly (in the large intestine) and that part is removed and then the have to stretch the remaining intestine back to the colon... My son was already tested for this 2x and both times negative. I was actually just reading up on "megacolon" that is what the last dr diagnosed him with and much to my surprise... it is the same thing as "hirschsrpung's disease"... I don't know what these dr's are doing these days... diagnosing a patient with something that has already been proven not to be... i am in total shock with the in-effectiveness of dr's and specialists in today's world.. Hopefully i will find answers real soon, as i have stated many times... my son is suffering...
Posted 1/17/2011 4:27 PM (GMT 0)
there is nothing worse in the world watching your child suffer and not be able to do a darn thing about it. I feel for you .
Keep pushing those darn dr's to do something, raise a stink if you have to. I'll be there with you in thought giving you the strength to deal with this,, and healing thoughs to your little boy,,,
Posted 1/17/2011 7:25 PM (GMT 0)
Thank you everyone for your thoughts and prayers. I have just returned from the doctor and they have ordered blood tests. I have already taken him, they ordered a full CBC, allergy testing, seliac disease (sensitive to gluton) and whatever else. They have referred him to yet another specialists, except this time it is suppose to be with someone that is very good. if any of you are in the orlando area, i am taking him to Arnold Palmer Center for Pediatrics GI. His appt with them is on Thrusday morning. Please keep your thoughts and prayers coming. I am not giving up and I am not taking "normal" as an answer...
Posted 1/17/2011 7:30 PM (GMT 0)
Please excuse my misspelling it is Celiac Disease...
Posted 1/17/2011 9:07 PM (GMT 0)
It is very good that you are taking him to a pediatrics G.I. and I am sure you will be able to get answers. Many of us went through a long diagnosis process and the most important think you can do is be patient. It is extremely hard to be patient when you see your child suffering but you child just needs to continue to know that he is loved.(which it appears you are doing a great job of) There is a great chance that what he is experiencing is not Crohn's disease and I really hope that it is not and is something with a cure. Either way, there are multiple people here with children suffering from digestive diseases and they can probably give you some great advice regardless of the diagnosis.
As for the fiber situation, like Nanners mentioned; miralax is a laxative but can help with chronic constipation. (from your other thread) Have you tried taking him off of lactose? That may really help help as you try to find answers. I have a stricture that causes constipation and I really had to change my diet to give me some relief. I went off of most breads, rarely eat red meat, and don't eat anything fried. I still eat a lot of chicken breast and salmon and the occasion steak or roast. By taking the breads out of my diet, I am not struggling to break them down and cutting a lot of the yeast out of my diet. Putting your son on a probiotic could probably help him too. Being as young as he is, I would start with a yogurt like activia. Good luck and let us know how your appointment goes.
Posted 1/17/2011 9:54 PM (GMT 0)
I am so sorry to hear about your son. I know he must feel miserable. When I was having problems with my Crohn's, my GI put me on Miralax and it made things much worse for me. It had a reverse effect on me for some reason. I did some research and started taking the supplement Slippery Elm. This herb was very helpful to me for both constipation and bleeding. Best of luck to you and your son!!
Posted 1/18/2011 1:54 AM (GMT 0)
the miralax really doesn't seem to help but it doesn't seem to be making it worse either... in response to the other post regarding the yogurt, i have tried that too... I have tried anything and everything you can possibly think of, that is why i know that there is something else causing his problem... I have not tried eliminating bread or red meat or fried foods... I have taken him completely off dairy products for a period of about 2 months and that doesn't seem to be the problem either... I am just completely dumb founded by this problem... It is almost like Mystery Diagnosis. Hopefully this go around with yet another ped. GI, they will find answers or at least try... seems like all the dr's we have been to thus far like to brush it off as normal...
Posted 1/18/2011 11:08 AM (GMT 0)
I'm sorry for you and your son's dilemma.  Didn't mean to "question" you.  Just wanted to make sure it wasn't a typo.  45 days would seem pretty D**N serious to me to.  No wonder you are in panic mode.  I can offer no better suggestions than those you have gotten, except maybe to stand up on some doctors desk until they take you at your word and look harder.
Posted 1/18/2011 3:29 PM (GMT 0)
mdf34

You are funny... I know you weren't "questioning" me... I totally understand you were probably not the only one that thought it was a typo... anyway, i did finally get some testing done... went yesterday for blood work and going to yet another specialist Thursday... hopefully this time, they wont stop until they find an answer or I may just take your advice and stand on their desk until i do get some answers... I would probably end up in jail, but at least my son would be better...
Posted 1/18/2011 3:31 PM (GMT 0)
I'm soo sorry to hear ofall your sons problems. My prayers are with you! I don't have anyy diagnoses type advice, but until you can get him to see the ped. gi. i recommended what us crohnies call the clear liquid diet! As long as it is not for a real long time it will not hurt him. He may feel better after he does actually have a BM. You can also get liquid or chewable vitamins along with ensure(or a similar dietary supplement). I would truely beleive that this is a better option than allowing him to consume his normal diet. Even if he hasn't had a BM all the fluids may help it along as well. I pray for relief for your son and you and hope that appt. isn't too far off so you can get the ball rolling. By the way I fought Drs. for nearly 15 years to find out I had crohn's and when I finally did I needed surgery ASAP. Don't give up!
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