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[ssalas]

This is for my 19 yr old son CJ, November 2012 he told me he thought he had a hemorrhoid, I took him to the doctor who was a female and said she preferred he see an male doctor. I then took him to a male doctor and he said it was a “fissure” and that he needed to see a surgeon, when they called with the surgeon appt it was at least a 2-month waiting period so I asked for another surgeon that could get him in sooner. He saw the surgeon who I will call (G) in December was said they needed to do a sphincterotomy . When they went in they did not do the sphincterotomy the said “I stretched it and scraped it”. Within two weeks (January) we were back in surgery with the plan again of a sphincterotomy, he did do it this time and also said “I scraped it again, so much that he will be in a lot of pain, more than he ever has been”. The month of January and the beginning of February he was in and out of ER. The second week in February he was admitted from ER into the hospital for a bowel obstruction; by this time (G) was totally frustrated and offered no answers. I then asked to see a specialist and was referred to someone in OKC, also because I asked for a specialist (G) got rude and had his secretary tell me “there was no reason for him to see him any longer”. We get to OKC and the specialist asked him a few questions and looked at his rectum and said “there is nothing I can do for you” and walked out. At that point my son had been crying everyday for about 4 months and no doctor, and to top it off he lost his state medical care when he turned 19 while he was in the hospital. So we had to wait a month for my insurance to go into effect, then in April we took him to a colon rectal surgeon who said it thought it might be Crohns, then was sent across the hall to see GI doc. Went back to the GI doc a week later and set up appt for a colonoscopy and endoscopy. Not sure how the rest of this works, they said blood work was negative and he had no other places affected by the Crohns except the rectum. They admitted him into hospital and was TPN for 9 days and started on Remicade. He came home Friday 5/10/13 and has very little rectum pain and the bleeding is gone.. looks like the Remicade is working. Our new concern is after the first visit to the GI he prescribed him prednisone and I really think it is giving him stomach pain. He has had really bad stomach pain for a couple of weeks now .. Any suggestions on that?

 

[alex_chris]

Sorry to hear that your son has gone through all this, but I think it will get better now that he started Remicade and that this already had a positive effect.

Any reason the GI put him on pred? Prednisone is used to fight flare ups in the short term, but as a corticosteroid it has a large variety of side effects for many people. Considering he just started remicade and that seems to help, I wonder why he also started pred. The problem is, once you start pred, you should not immediately stop (except in case of really bad side effects). Do you know what dosage he is on and whether he has started to reduce the dosage? Prednisone is normally tappered off to 0 within 6-8 weeks.

 

[ssalas]

He was put on the prednisone when colorectal surgeon thought he might have crohns but the GI was still doubtful because it has only affected the rectum from what they can tell. I told the GI that is hurts is stomach and he said he didn’t think that it would do that. He will taper him off he said but not sure when.

 

[my little penguin]

It is typical to start pred with remicade.
Remicade can take 6 weeks to work.
Pred is needed to reduce the inflammation while the remicade is taking time to work.
With Ibd patients you can be on pred for months while you taper.
Ibd can cause stomach pain by itself.
Has your son had an MRI or pill cam?
That can tell if there is involvement in the small bowel the Gi couldn't see with a colonscopy.

Good luck

 

[ssalas]

He has not had a MRI or pill cam.. just 5 months ago neither of us knew what a fissure was so I dont really know whats going on with all this, I feel overwhelmed cause I know he looks to me to make descisions and I dont know what he is feeling, what if I make the wrong descision? What is IBD?

 

[Catherine]

IBD - inflammatory bowel disease

 

[dodie74]

My son also has crohns in the anus, his started with a fistula down at that area and he had surgery to clean it out and treat it. he recently had a fissure too so was back to hospital for another procedure and so far is ok. he takes salofalk and 6mp for his crohns and so far so good. I hope things improve for your son, sending hugs. xx

 

[ssalas]

dodie74 I would really like to know more.. how long has your son had this? The DR's were so doubtful because they said its so rare, I have a hard time believing that is what he has.. Your story would be great

 

[dodie74]

My son is now 10 years old and was diagnosed 3 years ago. His tummy was very bloated and he had alot of gas, belching etc. He started complaining about his bum being sore so i had look and he had like a large spot that was weeping. took him docs who tried antibiotics first but didnt work. I took him back again as the bloating got worse so our doc refered us to kids hospital for tests. he had colonoscopy, endoscopy biopsys and camera capsule done and it came back his crohns was located at his anus, stomach and ileum. regarding the fistula, he had it cleaned and treated with medical manuka honey which i done myself at home and cleaned and dressed it every day. it healed ok. I thought again he had another abscess not long after so he was put on flagyl and cipro and that done the trick that time and it cleared. The area where he had the fistula never ever really healed fully and when Kian had a bowel movement there was always blood on the toilet paper, no pain so he was taken back to hospital incase was another fistula but was a fissure this time so again got cleaned and im still treating with manuka and hes just finished a 5 month course of metronidazole(antibiotic). we have 6 monthly check ups at the childrens hospital and now on 3 monthly bloods and he is doing well, touch wood. Im so sorry about your son, its heartbreaking. i hope the remicade works for him. xxxx

 

[Tesscorm]

I'm so sorry you and your son are having such a rough time!

My son has never used pred so I don't have any experience with its side effects but, as was said above, crohns/IBD itself can cause stomach pain.

Here is a link to the Treatment subforum, to the Prednisone subforum specifically. You may find some info re stomach pain here.

http://www.crohnsforum.com/forumdisplay.php?f=80

I'm not sure if this will help but if the pain is simply being caused by crohns, perhaps try a very light diet for now... low fibre/low residue is easier to digest. Perhaps he can try some of the nutritional shakes (Boost, Ensure, etc.) to supplement his diet and reduce a bit of the solid food to see if the pain lessens - again, it might just be a bit easier on his system until the remicade begins to help more. I've also read a heating pad can help stomach pain a little bit.

Do not give him ibuprofens as they can worsen crohns. I'm going to tag Niks and Kimmidwife as I'm pretty sure both their daughters have taken meds to help with stomach pains - perhaps they can give you some ideas.

I know there are other members who have mentioned stomach pains, perhaps try to use the 'search' feature to find some other posts for ideas.

Its terrible to see your child in pain, I wish I could be of more help! :ghug:

 

[Farmwife]

Pred can be very HARSH on the stomach. My Grace has to be on a PPI while taking the drug. Of course like was said crohns by itself can cause stomach pains.

Please take a look around this forum for info. Ask lots of questions. We're all parents to children ranging from the very young like mine, to adult children like yours. We all want what best for them. But sometimes what's best for them can still be a hardship to figure out.

My heart goes out to both of you. Hang in there mom, your doing a great job:ghug:

 

[Devynnsmom]

I'm so sorry he's still feeling bad, I hope he is feeling better real soon. I've heard prednisone is really hard on the stomach.

 

[CarolinAlaska]

Yes, it's really hard on all of us when we had to make these kind of hard decisions for our kids. Yours is older and you'll want to involve him by keeping him informed of all the risks, etc. I am trying to do that with my 14 year old daughter as well, although she still, of course, trusts me to help her make decisions.

I think prednisone can be very hard on your child's stomach. You especially don't want to mix it with nonsteroidal anti-inflammatory meds like ibuprofen or naproxen (Aleve) which can cause ulcers if the two are used together. Those meds should be avoided in Crohn's patients anyway.

 

[Niks]

Hi there! So sorry to hear about all you and your son are going through.

My daughter has found abdo pain really hard to manage. She does have tramadol and oramorph for when really bad, but because her issues are dysmotility, they can be really constipating. Buscopan and amitriptyline as well.
She uses heat pads that she wears under clothes!!

Hope you get some answers soon. (((hugs)))

 

[Sascot]

I can understand the uncertainty. My son did have sore tummies on and off for about a year before he was diagnosed, but after doing the 8 weeks EN his stomach pains have gone. He had a really bad abscess last year which ended up needing drained and then packed with silver dressings for a couple months. Then we ended up using the medical Manuka honey. Now he has a fistula in his bottom which is not healing up (on 6mp) so we will hopefully have surgery to irritate the inside of the fistula to encourage it to heal up.
I hope things settle down. I would try to get the GI to start reducing the Pred since the Remicade seems to be working.