[Serious] Infleximav doesn't always work

[schoolbusdriver]

Well, my son goes into hospital in about 3 hours for an ileostomy. The surgeon's decided to override the medical consultant to prevent further damage. As some of you know, my son suffers from Crohns disease. About 3 years ago a fistula developed in what remained of his colon. It was originally thought that medication would control it, but that's not been the case. Infleximav (Remicade) hasn't worked either. It also looks like the fistula is starting to cause nerve damage - which could cause loss of mobility. It's already causing reduced muscle control below the colon, and I had to take him into A&E 2 weeks ago because of internal bleeding. He hasn't been able to eat properly or get a good nights sleep for months. I hope he'll be able to have a bit of a life after this.

Bye.

[wossname]

Good luck, buddy.

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I have been having Infliximav since January and while it worked (kinda - I still had some symptoms), my consultant said it could accelerate the onset of cancer. Which it did.

Good luck to your son. Having an ileostomy is merely a means to an end (quite literally). But I seem to remember you saying he had had one before.

[schoolbusdriver]

Phew. He's alive. And kicking - or will be soon. Still very weak ATM.

The surgeon's terminology was interesting - described things as a "right old mess". He did CAT / MRI imaging scans before the surgery so that he'd know what to expect.

A second fistula had developed over the years between 2 widely seperated areas of intestine, so that food and medication wasn't being absorbed. Add that to the original problems mentioned above, and a restriction that had developed in the scar tissue in a previous joint in the intestine from older surgery - take note anyone thinking of re-connection - it's no wonder he was frail and anaemic.

The surgeon's said it's still possible to re-connect everything, while pulling a face and saying "but would you want to go through all THAT again ?". My son's said enough is enough - the ileostomy stays. The good side is no more asacol, prednisolone, azathiaprin, remicade, metronidizole, flagyl, pentasa, folic acid, ferrous sulphate, possible liver and kidney damage from the medication, spells in hospital, regular bouts of illness requiring other antibiotics, living next to a bathroom, etc, etc. And now that the internal bleeding (from the 2nd fistula) has been stopped - no more blood transfusions.

He'll also be able to have a beer or 2 (officially highly recommended for it's calorific value)

He's still in hospital and being (over)fed intravenously atm, with increasing amounts of solid food. Yesterday he had a ham sandwich - the first "solid" food (jelly and ice-cream don't count) for a week . Who says the NHS is stingy .

[grilkip]

Sounds good, before you know he'll follow in his dad's footsteps. Hitting the brakes too hard, being impolite to passengers, poor hygene, you know the list.

[penagate]

That's good news although it sounds like a heck of a business.

How old is your son?

[schoolbusdriver]

Sounds good, before you know he'll follow in his dad's footsteps. Hitting the brakes too hard, being impolite to passengers, poor hygene, you know the list.

Have you been stalking me ?

[schoolbusdriver]

That's good news although it sounds like a heck of a business.

How old is your son?

28. A few weeks ago we thought he wouldn't see 29. Now it looks like I'll die of old age before him.

[grilkip]

I'm happy to know that, as I know that many Crohn's sufferers never even reach that age. And so my previous post was made under the assumption that he was a teenager or younger.

So I no longer assume he wants to be a bus driver .

Good luck to your son.

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My great uncles sisters son has Chron's disease and he's in his 50's. You are living in the past my friend

[grilkip]

You were the one that informed me, you knob.

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Many do die young and many survive to a ripe old age. Two people I knew of who had Chrons died in their early 20's.

I am glad I didn''t have that and hope I never get it.

[schoolbusdriver]

He went off the idea of bus driving when he saw me change the status of an idiot from passenger to pedestrian .

Crohns usually affects the colon, but can spread up through the small intestine. Some sufferers end up on a purely liquid diet. In extremes only intraveous feeding is possible. It also causes fistulas to unrelated organs - a pharmacist at our "local" chemist who suffers from crohns ended up with a fistula into her womb.

On a lighter note, my son's getting ratty - a sure sign of improvement. Most of the tubes he was connected to have been removed. Just 2 pus drains and an IV left. The opening the surgeon made is held together with metal staples - reminds me of a zip. I'd post pics, but I don't want anyone vomiting on their keyboards (or do I ? ). (Besides, morning sickness might be mis-interpreted)

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I wanted to post pics too. But I once posted picture of a severed finger and got banned

I am glad your son is on the road to repair. I know what those drains are like a big pain and the relief of having it out is great . Watching them pull it out was interesting too - it had to be about a metre long.