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Veteran spouse of Crohns patient

Hi my name is Vickii,
I have lived w/Crohns disease pt. for 35 years. He was diagnosed in 1972. has had major surgeries, so we have had alot of experience w/the disease/. yes it is a horrible disease.
Right now my husband isnt real good. His disease has never went into remission. After each surgery (from VA in the 70's & 80's) they called exploritorilaprotomy. (sorry for spelling) When he was diagnosed one out of 100,000 people had Crohns. (regional enteritis) in the begining, then full blown Crohns. He doesnt have many intestines left and the last colonoscopy didnt turn out good. He is 58 and has fought this his whole life. (our whole life) They are just trying to make him as comfortable as possible & give him a better quality of life for what is left, is what the last Dr said after his colonoscopy. So any help I can give someone w/my experience may help someone else.
Thanks
Vickii
 

David

Co-Founder
Location
Naples, Florida
Hi Vickii and welcome.

I'm so sorry to hear about your husband. My most sincere of condolences to the both of you. I hope I'm not being insensitive by posting this as I don't know the exact circumstances you're dealing with, but is there any chance of a bowel transplant for him?

*hugs* to you both.
 
no I have researched it and his body was so far down they didnt know if he would even make it off the table if they had to do surgery. Thanks for asking tho. One thing I do have to say for all Crohns patients dont wait to go to dr. This disease can deplete you so fast it is unbelievable. If you cant sustain yourself your body eats its own muscle then will work on the other organs and ruin them. I was just hoping to help w/my experiences and my knowledge I have learned thru these 35 years.
 

Angrybird

Moderator
Location
Hertfordshire
Hello Vickki and welcome, thank you so much for deciding to join us so you can help others. I am so sorry that your husband has not be able to achieve remission with this disease, it is a long time that you have both had to deal with it. If you don't mind me asking was a bag/stoma ever an option for him? What medications is he now on to try and make things comfortable?
 
Hi Vickii and welcome.

I'm so sorry to hear about your husband. My most sincere of condolences to the both of you. I hope I'm not being insensitive by posting this as I don't know the exact circumstances you're dealing with, but is there any chance of a bowel transplant for him?

*hugs* to you both.
Hi not insensitive thanks. no he is not a good canidate for transplant, Veterans administration in 70's used him as a guiena pig. We just got colonoscopy & there is no hope. they gave him 2 years or less back in November 2011. He is now starting into renal failure. too many fistulas, scare tissue, pallups etc. colon is dead, will never be outta pain they just kinda said they would keep him as comfortable as possible but cant do anymore. :( Now researching renal failure. any info on this is appreciated. Thanks still hopeful
 
Hello Vickki and welcome, thank you so much for deciding to join us so you can help others. I am so sorry that your husband has not be able to achieve remission with this disease, it is a long time that you have both had to deal with it. If you don't mind me asking was a bag/stoma ever an option for him? What medications is he now on to try and make things comfortable?
back in the 70's they almost bagged him but decided against it. He is now in renal failure & he is on home health. I became his nurse. He is now off TPN but last blood labs werent good. Renal failure. Now just living on borrowed time. They have kinda just gave up on him. Thanks for the concern. :poo: Peace & Love
 
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