Crohn's Disease Forum » Support Forum » How can I help my Husband - I'm desperate


08-24-2017, 03:36 AM   #1
2522laura
 
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How can I help my Husband - I'm desperate

Good morning all,

My Husband has suffered from Crohns for over 23 years now, had several surgeries (had a J-Pouch done when he was around 15 as they did a life saving op when they thought he had UC but when they opened him up they realised he actually had Crohns, otherwise they wouldnt have given the J-pouch) He still has the J-Pouch and has had several surgeries over the last few years to remove more bowel and strictures. He has tried every medication available (currently 7 months in to Vedolizumab) to no avail. The only thing that has made him feel better is being on pred but obviously he cant have that all the time. Since being on the Vedo he has started getting really bad pain in his back (x-ray has not shown any sign of arthritis) so a few days ago was told to come off the Azathioprine which he has done but is now also feeling sick and is bleeding again (though this is not necessarily due to coming off the Azathioprine as with every treatment he has had he has still experianced bleeding, swelling and blockages - we have had several trips to A & E over the last few years).

I received this from him this morning:-

Think I might have to get in contact with the hospital again, was having issues on holiday with swelling, the blockage etc and some bleeding.
Coming off the Azathioprine may not have helped or it might not have made a difference but Iíve been bad the last few days too, feeling sick, having trouble going and bleeding.
I could push for that new treatment but then again that wonít solve the stricture issues and will still come with associated side effects and cancer risk, plus my joints and bones are starting to suffer now too, I think it might be time for me to bite the bullet and have the surgery, itís the last thing I want especially with a potential cure in sight and there are a lot of factors that worry me about it but I think Iíve come to the end of the road and donít see things lasting much longer without intervention.
Really struggling with the dilemma mentally at the moment, obviously other stuff on my mind probably isnít helping I suppose.

I dont know what to do to help him, he clearly isn't in a good place right now (he is also going through his Mum having bone and brain cancer right now)

He had his last clinic appointment almost a year ago and has had the last two cancelled by the Hospital (Addenbrookes in Cambridge) and they have also taken away funding for the IBD Nurses that you used to be able to call for help so he literally has no where to turn.

Please, what can I do to help him. We have a young family and I need to get him through this. He knows I think having the Stoma is the right way to go, I have been telling him for years I think it would help and that I would still love him and find him attractive.

Thanks for taking the time to read this
08-24-2017, 05:37 AM   #2
Guerrero
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Join Date: May 2017

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Give him all the support you can as you are doing and try be positive on the outcomes of the next therapy or surgery.

I hope he'll feel better soon for you, him and your family.

I send you all my support
08-24-2017, 05:47 AM   #3
2522laura
 
Join Date: Apr 2011

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Do you think its worth trying another hospital?
08-24-2017, 05:59 AM   #4
ronroush7
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Sending supoort and prayers. You could try another hospital. Let us know how he is.
08-24-2017, 07:35 AM   #5
Trysha
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So sorry for all the suffering you are both enduring.
It is quite possible that if he went to the emergency unit at Addenbrookes he would be seen quickly ...his symptoms and suffering really warrant this.
Have you discussed this with your GP
He could also have his Meds adjusted and maybe they could hasten the use of Humira or Remicade before doing any surgery...just a thought...worth a try
No harm at taking a look at another hospital though Addenbrookes used to have a good name
He does need some treatment urgently so I would suggest some action as soon as possible
Feel better soon
08-24-2017, 08:43 AM   #6
2522laura
 
Join Date: Apr 2011

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I have told him to contact them so fingers crossed he will before he ends up in a & e again. It did used to have a great reputation but now it is just far too over-subscribed and under-funded that it is dangerous. I already lost my Dad because of their negligence two years ago.

He tried Humira and it didnt work, not sure if he has been on Remicade?
08-24-2017, 11:10 AM   #7
Guerrero
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Join Date: May 2017

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Possible biologic apart humira and vedolizumab are stelara and remicade. As trysha said it worth a try if you are not convinced about surgery...
In case of surgery be sure to do it in a very well referenced hospital with a surgeon that regularly treat crohn's patients.
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