Why the stomach pain and who has information on Remicade

[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?

 

[Trysha]

Hello ssalas
Sorry to see no one has answered you yet.
It s very sad to see the treatment your son has been given prior to seeing the appropriate GI specialist.Quite unacceptable in fact to increase his pain and suffering in this way.
It is good that the remicade has been swiftly effective it can be like that and was for me.
However the new pain needs to be reported to your GI.
It is difficult to know what is going on there and it may be an effect of the prednisone.
I would suggest you get in touch with the GI as soon as possible.
Hope your son will feel better soon.
Hugs and best wishes
Trysha

 

[Clash]

Which was started first the pred or the Remicade? If it was the pred then at what dosage and how long was he on it before he got the Remicade infusion? Besides the colonoscopy/endoscopy did they do any imaging(CT, MRI, MRE) or a pill cam to look at his small bowel?

 

[ssalas]

Trysha we reported the pain to the GI and he seems to dismiss it, he said they has just done the scopes and there was nothing there and he thinks the pain is .. well never gave me a direct answer but something to the effect of constipation. My son says it is not the constipation it is a different pain. This particular pain started right after he strated the pred... @ Clash pred was started first and is still taking it untl further notice.. it is 15mg moring and 10mg at night, he was in hospital and given it through IV I dont know the dose of that and I would think the pain would stop since it was IV and not stomach but it did not go away, and the scopes are the only thing besides blood work that was done.

 

[Trysha]

I think you need to get back to the GI and let them know the pain is not going away.
Your GI should know that scopes although excellent instruments are not infallible, nothing is with Crohn's as my eminent GI has told me on more than one occasion.
Your GI must listen to you and investigate further if indicated.
Some investigations can be intrusive and not without hazards but sometimes have to be done.He may be waiting to see if things settle down.
If necessary I would seek another opinion.
Feel better soon
Hugs and best wishes
Trysha

 

[staloffn]

Has any blood work been done since the start of the new meds? I had a bad reaction to Imuran that caused pancreatitis. took awhile for me to identify the pain as being different from the pain i was in normally. maybe its more then its just upsetting his stomach etc. but causing an increase in enzyme prodution? I've read others have had different meds cause liver enzyme to get out of whack. I'd suggest being pretty persistent with the GI about further investigation into it. there is too high a risk to assume its not an emergency from my experience. I brushed the pain from the episode with the pancreatits off for 4 days and was a bit too close to dying over it. don't mean to be an alarmist but i've been foolishly stubborn and its only b/c of my family that i went in were my doc called me an idiot for shrugging the pain off as normal. i like to think i've become wiser in the last ten yrs since that occurred... and share that story b/c i know how easy it is to assume its prob. normal pain.