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Looking for help

Hi there. My 15 yr old son was dx'd nov 2009 with Crohn's . He has been in utter agony for months. He lost 65 pounds and has been through H*** the past 2 yrs. (The dr's dismissed his stomach pains, recurring fistulas, bowel issues and fatigue. They even said "good job" on losing weight. Finally I planted myself in the office and said i wasn't leaving until Igot a referral because I knew something was wrong with my child- not just single incidents of whatever symptom was occuring ) He has been on several oral meds and spent a week getting iv meds and steroids. Currently he is in intense pain after eating. So he either starves, vomits after eating or eats and curls in a ball moaning after. I am so upset- to see him suffer is horrible. My question is- are any of you who suffer from Crohn's on pain meds? I understand the risks and concerns of pain meds- but slowing down his bowels sounds like it would help with his diareah (sp) and the few times he was given pain meds in the hospital it was great- his pain went away and he could get up and do things. His quality of life is diminished- he is not in school, losing touch with friends and feels awful- he does not want to live with the hunger or the severe pain. He is a tough kid and generally has a high pain tolerance so I believe how bad this pain must be to be keeping him this way.
Any advice for pain relief? Things or meds that work ?(we have tried every diet change we read or heard about) I dont think it fair he should be made to suffer when pain med is available. I worry for his mental health- he says he will hang on and keep trying new meds and new Drs but he will not live like this forever.
Sorry to blurt out all this but if anyone can help I believe it will be you guys who have experience and live with the same things he does. Thank you so much for any help you can give me. I am just at my wits end and so, so frustrated.
Hi Crohnsmomma!

I am so sorry about your son. I was also diagnosed at age 15, and it took me a few years to get diagnosed also. It is rough being so young and being in so much pain.

When I am in a really bad flare, they will sometimes give me pain medication. I think there are several people on here that are on pain meds. It seems my doctor really doesn't like to give pain medicine out.

The only things that I can really suggest that help me a lot (i don't know if they just make me relax a little, or it actually helps) but, I sometimes sit out in the sun. The heat from the sun sometimes helps relax my belly. Also, sometimes nice hot baths help it out too.

What medicines do they have him taking right now? Sorry I am not much help. It is not fair that he has to live in pain. Have you asked your doctor to give him pain meds?
I've been on pain meds once or twice over the years as well. Ultimately the aim is to achieve remission though, and it sounds like the doctors aren't trying hard enough. Is looking for a new (better) GI an option?

The severe pain and vomiting sounds almost like the bowel is partially or intermittently completely blocked. If so, it really needs to be sorted sooner rather than later otherwise surgery may become unavoidable.

They even said "good job" on losing weight
Wow. That's patronising.

I'm a bit overweight (after years of steroid treatment), but every time I mention it to my doc, he tells me not to try to lose weight. Better to be healthy and a bit chubby ;)
Are the doctors that your son sees GIs or just regular doctors?


Hi there
and welcome to you both

Gosh, I've got a 15 yr old son, and I would scream the A&E down if he was in agony like that!
Creepy's right, these docs, are they specialists in IBD, or GPs,?
You mentioned IV meds and steroids in hospital, did they send him home with a 4 month course of Prednisolone? Or any immuno modulators such as 6MP or Azathioprine?Pred would stop the inflammation, help him to gain weight, give him energy and help him heal enough to manage school.
When I was in hospital back in Jan, they gave me Codeine Phosphate, it is a strong painkiller, and combats diarrhea too, but it can get addictive long term, and makes you drowsy, so it's good for a good nights sleep short term.
Your son must NOT use NSAIDS at all, like Ibuprofen, big no no for a Crohnie!
In my own personal opinion, diet alone won't help your son if he has inflammation,
My advice? keep your eye on the vomiting, sure sign of blockage, narrowing or obstruction, go to A&E asap, and try to get a second opinion, don't give up, there are loads of great meds out there for your son, persist! do some research and check this forum on treatments too.
good luck, any questions, fire away!
lotsa luv
Joan xxx
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I agree with the others. Keep trying to get him into a GI that will listen. He shouldn't have to live with all that pain.
In the hospital they gave me dilauded and sent me home with a prescription of it as well. I luckily haven't had to take many since my other meds started kicking in and relieving the symptoms. But I keep it just in case.
I hope that both of you get some relief soon!
I concur with the others, first get him to an understanding GI that'll listen. I was diagnosed at that age, a month before I turned sixteen. It's only been a year and a half since for me.

Secondly, is he on any medication right now? All I can suggest diet wise is be very careful. I would stay low residue and avoid grains and gluten and watch the sugar intake. Go organic when you can, especially with meats. Have you heard of the Specific Carb Diet? If you haven't, I'd look into that. For some it works wonders, including myself. However if he's been like this awhile you might want to put him on a liquid diet for a little bit to rest his bowels and then slowly work back to solid foods that are usually easy on the stomach. Eggs are my safety food, boiled or scrambled with just salt and pepper, though you might even want to leave those off.

Thirdly, be sure he isn't taking any NSAIDs. That can make the current condition already worse. Meaning if he's taking any over the counter pain reliever he can't have anything but Tylenol (Acetaminophen).
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The weight loss is probably due to malabsorption. He might have crohn's inflammation in the small bowel. If that the case, congratulating him is totally uncalled for. Time to find a GI/ new GI. He probably needs a CT of the small bowel to see if it is restricted, or just how bad it is and then I would think a course of steroids to get him under control. Then he can go on Humira or a similar drug long term, if he has IBD. Prednisone is a steroid and it's like calling the fire department, lots of side effects and not good to take long term but it works fast to get the inflammation calmed down which is what it sounds like he needs. Has he had a colonoscopy with biopsies? That will be a big part in diagnosing what's wrong. Good luck and I hope he feels better soon.
Thank you SO much for the replies

Thank you all so much for the replies! I really appreciate it. I will try to answer some of the questions you guys had- He is seeing a pediatric GI who supposedly is an expert in Crohns- This is a new one and we saw him over a week ago but he hasn't called us since the visit as he said he would when he went over the tests etc. In the hospital in March (under his last Drs care - who never came to see him ONCE in the hospital in 8 days, thus my finding a new Dr) they did do anothe rcolonoscopy with biopsy, ct and camera*somethingoscopy (my name for swallowing the camera in a capsule test) The new Dr is supposed to get all the info from tests and go over them. He did do a new xray to check for major blockage and new blood test etc.
He did try a round of steroids at home and through iv in hospital. He is on pentasa and one other med I dont have written in fornt of me. Done with the steroids, though.
I will lok into the diet mentioned (carb specific) We have tried other things and we have done liquid diet which does help but of course he is starving and feels awful. Now that he is off steroids he has started losing weight again. He is 6'2 (so far) and probably can lose another ten pounds but after that he will be starting to look thin and he has lost muscle mass too. He has so much loose skin from the rapid loss he hates it- being a teen makes that difficult I think.
I definately will be talking to the new GI about pain meds- getting him into remission is a good plan- but why should he suffer until they can do it. I am sorry you all have to suffer with pain as well. I am recovering from a spinal cord injury and have horrible nerve pain so I so understand being in pain and how exhausting and depressing it can be. I don't want that for him .
I am going to go re-read all your great posts and go over them again so I can tell him the suggestions you guys have made. He is actually out at a friends right now, which is great. I took him to the mall to buy some smaller clothes because he was embarrassed about his clothes being too big now. I think he feels a little better with the new clothes and went to show the ladies. lol. Thanks again- you all are great.
Hi Momma, Im so sorry to hear of your baby's suffering. I dont know that theres anything harder than to watch your child suffer. My hugs and prayers go out to you. In my experience with pain meds, my GI wont give me any!! I have to get it from my family doctor and I am waiting to get into see a pain management doc. I have to be on pain meds during bad times. I found that with the steroids my disease has calmed down and so I dont need the pain meds as much....but still have days where I do. Ive had to fight for pain meds, its like they treat everyone like a pill junkie....and believe me....thats the last thing I am. I wish you luck...also with pain meds it helps to slow my d a lil bit, it causes me to back up a lil....which is great! Good Luck~
Keep bugging the doctor they are very busy and you have to assert yourself. When I did my colonoscopy they told me a week to ten days for biopsy results to come back. Long story short, I was in agony and I bugged them to get me in sooner and they said we're waiting on the results. So I called the hospital and bugged them and offered them money to speed it up, lol. They reacted very funny and told me to call my doctor, but I told them I did and it was no use. In hindsight I know why they acted that way because at the appointment I asked for copies of all my records and I found out the biopsies were done about an hour after my colonoscopy, so the whole week to ten days thing was just a story, the results were in that same day. Not saying it's the same in your case, but it might help to bug them a little.

Also try liquid shakes like Ensure. I also lost muscle mass and general strength.


To save time...Ask Dusty!
We have had good luck with a sort of modified SC diet. We avoid processed (store bought) meats, pasta and most gluten containing products and sweets with refined sugars. We aren't 100% on any of it but since we started this in Jan., with the exception of occasional bloody d, EJ has felt great. I hope your boy is getting better, I know how hard it is on a parent as well.
Crohnsmomma, so sorry to hear about your son. I hope the new GI doc can give you some answers. I have no words of wisdom, but I think the others have given you some solid advice and questions to ask the doctor. Let us know how he is doing.