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I'm scared for my dh. Please reassure me.

29 replies

CherryPie3 · 04/02/2011 09:50

My dh has crohns disease and has been suffering with a severe flare-up for the last 3 weeks. After 2 weeks of it he emailed his specialist as it wasn't improving as much or as fast as he'd like it to.
His specialist sent him for a sigmoidoscopy, which showed lots of inflamed areas and that he was definitely having a flare up. A bad one. :(

Because of the severity of it he was admitted to hospital, where he will stay until things calm down. The doctors have said Monday at the absolute earliest if things settle down. As of last night things were worse as his pulse was racing and his temperature very high, even after medication they were still too high.

He can't eat, his stomach and digestive system are rejecting anything that he swallows, drinks included, and he is rapidly losing weight. I'm scared he's gonna end up being fed by tubes if it carries on.

He had a ct scan on Wednesday (my birthday) which showed further affected areas which have never been affected before - his large bowel and some of his small bowel.

Doctors are throwing all kinds of treatment names around like steroid injections and infliximab infusions. I just don't have time to absorb one piece of information before theyre telling me about others.

I'm trying to juggle 3 kids (4,5 and 7m), the school runs and housework. "not enough hours in the day" is the most appropriate saying for me lately. The hospital itself is 15miles away and is costing a fortune in petrol, which I don't mind too much cos he's worth it and it's only money after all - I just don't have a lot of it. In 4 days it's cost me £60 in petrol, and it's only a 1.4 fiat grande punto.

Well done everyone who reads to the end, even if you don't post (and I wouldn't blame for reading and running). I guess I just needed to write it down somewhere. I don't even know what I want anyone to say.

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Unicornlover · 10/02/2011 18:37

About Disability Benefits I advise for you to try again. Nearly everybody gets turned down first time but if you apply again they see that you really need the help. If they turn him down again it needs appealing against as this shows them your not just going to go away.

Do you mind if I pray over this? If I was close enough I would offer physical help but I don't so the best I can do is pray for you and your DH.

CherryPie3 · 10/02/2011 21:49

kingprawn his boss is lovely, I'm pretty sure she'll have no problem whatsoever - it's definitely dh with the problem :). He is very hardworking!!!

unicorn that's very sweet of you!! Thank you so much :). I'm trying to talk dh into reapplying but he feels like 'they' think he's lying and that's why they rejected the original claim - I'll keep trying :)

Thank you ladies :) xxxx

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triplets · 10/02/2011 23:33

Poor you Cherrypie, its really hard isn`t it? We had a pretty disappointing discussion with my dh oncologist today, he has bowel/liver/lung cancer. We have had very little support from our McMillen nurses, family have tailed off as w e are now into our 3rd year, my trio are 13, its all a nightmare. My lovely younger brother has Chrons, had it for 18 years now. He was told 3 years ago he would have to have a permanent colostomy which he refused. They then offered him Infliximab, he has never looked back!He spends 6 hours a day every 4 weeks in the hospital, then has 4/5 really good weeks in between. I hope they can soon find something to give your poor dh a better quality of life. Love to you all. xx

CherryPie3 · 11/02/2011 08:26

Hi triplets - you've got a lot going on too haven't you :(. There's nothing more effective in making you lose faith than when the caregivers look like they can't be arsed! They either don't answer all your questions (sometimes not any) or dodge giving you a proper answer. (Have to stress that dh's specialist is fab and couldn't care less about how much it costs the NHS to give certain treatments - his patients come first and if they need it they get it- it's the other doctors that cause the problems and stress).

You've given me hope for the infliximab tho!! :):):) we have to see how the steroids go first but there's been a lot of talk about this infusion so it's definitely one they are considering!!

Lots of love to you - so much to cope with (3x13yo....ouch!) Grin xxxxx

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