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07-14-2013, 06:48 PM   #1
Flowerpot
 
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Location: Calne, United Kingdom
Helpless - need to vent

This might be a long rant, but I really need to just get it all out there, somewhere.

My boyfriend had his first symptoms of Crohn's disease in 1999 and was first diagnosed in 2005.

I met him in 2010 after having chatted online for over a year.

I had never even heard of Crohn's disease before that, and I remember he was quite emberassed trying to tell me during that first visit that he had to go for the 6th time. I had googled Crohn's disease and he had told me everything previously, and although I was a bit baffled that it was indeed that severe, I sat him down and told him that it didn't matter in the slighest. I was honestly not bothered about the frequent trips to the toilet, his careful selection of what to eat and what to not eat and him sometimes having to cancel plans because of discomfort and pain.

I'm Norwegian and my boyfriend is English, so after an excruciating period of maintaining a long-distance relationship, I decided to go back to school. And it made sense to me to do it in England.

We moved in together and are very happy.

His Crohn's disease has not been managable at all this past year. He had a right hemicolectomy in 2006 and is now suffering through a slight stricture and a new inflammation. He will get bad cramps, get blocked up (no bowel movements) and then proceed to have severe cramps, vomit and pretty much lay flat and try to sleep as much as possible until he stops vomitting and starts running to the toilet until he's too sore to even sit down.
After a extra couple of days of being sore and frequent toilet trips, he'll return to normal.

He was hospitalised not too long ago due to severe cramping and his general condition being very, very poor. When he gets blocked up, he'll have a 'detox day', pretty much not eating and barely drinking as well (despite doctors advice to keep drinking, it only makes him worse at this point).

The cramping gets really bad and I just never know what to do. I fetch him meds, I fluff pillows and try to make him as comfortable as he can be.
I soothe his hair, stroke his back if he's throwing up, empty sick buckets and generally just try to well... Just be there.

Right at this moment we're on holiday back in Norway to see my family and although he hasn't eaten anything that would normally set him off, the amount is probably too much. He usually eats very light small meals, and the huge family meals this past week got the best of him.

These are the moments I just feel totally helpless.
He's cramping very badly, but I'm not totally sure it's just a blockage. I've gotten used to 'diagnosing' his uhm, episodes? And when he gets a blockage his belly bloats and is rock hard on the right side. He has no bowel movements, cramps and not long after his breath smells of bile and unless the blockage clears he'll proceed to start throwing up.

But this time he's had a bowel movement not too long ago, his breath is normal and although he's warm to the touch he's not feverishly hot.

I start worrying if it's another bout of bad crohn's or could it be something else? Perforation? Stricture gotten worse?
His moans and gasps of pain are only drowned out by the rumbling of his belly and I'm just sat here.

"You'll tell me if it gets worse? You'll tell me if you need to go to hospital?"
Yeah, I'm real usefull.

There's nothing I can do to soothe the pain, I certainly can't fix him and although we both think he should have watched his meals a bit more, there's nothing I can do about it now. I don't nag him about what to eat and not, he knows his body and will manage himself. Everyone makes mistakes sometimes and it's not his fault for wanting an extra meatball when he's on holiday.

It's just unfair. He is by far the kindest person I have ever met and I can't even make him feel better.

His codine only makes the blockage worse, Buscopan does nothing for him and although mebeverine calms it down a notch, I can't do anything but fetch it for him.

He says I take care of him and I do try, but I feel so helpless.
It comes to a point where all I can do is let him rest and ride it out, but... I'm so worried for him.

What if, maybe if, could I maybe, would it help if...

07-14-2013, 07:05 PM   #2
DJW
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I don't know that I'll be a lot of help but when I get a blockage there isn't anything anyone can do to make me feel better. I ride these things out alone. I do know when I have had someone with me I'm grateful. I can't show it all I can do is thank them after. They wish they could do more but there really isn't anything to do.
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07-15-2013, 10:07 AM   #3
Cat-a-Tonic
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Hi Flowerpot, welcome to the forum. What medications is your boyfriend taking? And how often does he go to the doctor? Does his doctor know that he's having such frequent blockages? Blockages are a serious matter and his doctors should be doing something about it. He could have narrowing due to inflammation, in which case medication should be able to help things significantly. If his narrowing/strictures are due to scar tissue, though, then the only real way to fix that is to surgically remove them. The next time he has a blockage, I would say take him to the hospital. If a blockage doesn't resolve on its own, it certainly can cause a perforation and that is life-threatening.

Good luck, I'm sure this situation is tough on both of you. You sound very supportive of him and that's great, that's about the best thing you can do for him is just be supportive.
07-20-2013, 09:37 PM   #4
Flowerpot
 
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Location: Calne, United Kingdom
He is receiving attention due to his multiple blockages, there is some inflammation and he's awaiting a meetup with his doctor to discuss this

Thankfully, this episode worked out!

He threw up violently all night, but 24 hours later he was right as rain! <3
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