I am getting scared and overwhelmed by this situation now and I really do not know what to do to help.
(This is long - sorry)
My husband had a ileocolonic resection for strictures about 7 months ago now. He was seriously ill in the run up to the surgery (the strictures basically blocked his bowel), he was vomiting faeces, losing weigh and screaming in pain it was just horrific. We saw the surgeon a short while after the surgery who said they had cut out the crohn's so for the time being he is disease free. The doc was confused about why there was no chronic diarrhoea as normal after the surgery but it was just shrugged off. He said we just had to give everything time to recover and this would take about 6 months. Well we had a very short period of being 'ok' but then the problems started again, slowly at the start but then getting worse and worse. He would eat food and then an hour later the curled up in a ball screaming would happen again. This would last for a few hours until there will be a massive gurgling sound and the pain is gone. Until the next meal .... The GP diagnosed constipation and put him onto strong laxatives. This helped a little. As time goes on he stopped eating again. His weight plummeted again and his anaemia got worse and worse. He went off sick from work as he was sleeping all the time. This was all about two months ago. I was getting pretty scared.
The problem we face it that is impossible to contact the IBD team. If you email you never hear anything back. If you call them you get an answer machine where you leave a message. Then they will call you back - at an unknown time with a withheld number. If you miss that call you get a letter through the post a few days later saying 'we tried to call you no further attempts will be made' so you leave a message again and pray you will be around to get the call. I did eventually get through to the IBD team who just said it was constipation and to take more laxatives. A month ago he was really ill, he was vomiting bile up constantly. I had enough and took him to A&E. There he was admitted and was in hospital for 12 days - where they did precisely NOTHING!!!! Nothing at all was done. Ok they did an x-ray which showed his entire bowel (small and large) was filled with 'rocks' of faeces and then he had a CT scan which failed because he was too dehydrated to have a needle put into his arm but very fuzzily showed the twisted bowel. Then he was basically left to starve which eventually untwisted the twist in his bowel after a four days of no food. His surgeon eventually came to see him after he had been in for 6 days apologised for the incompetency of his registrar and that if they had put in the NG tube to decompress his bowels as they should have done he would have been home by now. He said it was probably adhesions caused by the surgery which had caused the bowel to twist but in the majority of cases when the bowel had untwisted it would be ok from then on. Hmmm colour me not convinced. When we left hospital we asked about follow up and was told that our pre existing appointment in May is close enough to be considered the follow up. They promised an MRE scan appointment will come though within two weeks. After much chasing he is having his MRE scan done in two weeks time - 5 weeks since he left the hospital.
Right now I am sitting here listening to him screaming in pain because he ate earlier. The pain is always in the same place - where the twist in his bowel was a month ago. We are both utterly exhausted. He is not sleeping though the night because of the pain. I am unable to get though to the IBD team for help and he cannot see the point of returning to hospital as he can starve himself at home for four days if it gets that bad again. Also he is about to run out of full pay sick leave and he says he cannot go off sick from work again so soon after being off for three months - he is still on a phased return as it is. My argument is that he needs to be constantly hasselling the hospital for help and keep being admitted is a good was to hassel them he is nothing to them so he has to fight for them to take notice of him - he is not convinced it would do any good. And then I listen to him sobbing that he cannot deal with this level of pain anymore. Mentally it is destroying him as much as the lack of nutrition is physically destroying him. I don't know how long he can actually keep doing this. He has been in constant agony from this for well over a year and a half now (took ages to fight for the surgery in the first place).
I honestly do not know what to do now. Take him to A&E again and repeat the very half hearted experience we had last time or hope he can wait two weeks for the MRE scan when hopefully we will find out what is really going on inside. The doctors just seem to be shrugging this off as just a normal side effect of surgery - which it may be but it is destroying him. The worst thing is he is iller now than he was before his surgery! He may be Crohn's free but there is still something going very wrong with his bowels. I am wondering if the crohn's is causing ulcers in other areas but all his bloods show he is not fighting any inflammation at the moment.
I just feel so overwhelmed with all of this. I feel utterly abandoned by the doctors, I am worried about the impact on his employment and financially of him being hospitalised again, I am not coping with seeing him curled up screaming in pain all of the time or sobbing and punching things shouting that he cannot deal with this anymore. I am struggling to see him looking like a skin covered skeleton with less energy than a sloth. I am scared about what is actually going on inside him.
I was reading world MAP day literature and they saying is 'I want my partner cured not managed'. All I could think of was I would love for him to be managed right now!!!
So yes sorry that was long. I am writing all of this without his consent - I dont even know if he uses this forum but I am at my wits end with this and really need help, suggestions, experiences, anything.
(This is long - sorry)
My husband had a ileocolonic resection for strictures about 7 months ago now. He was seriously ill in the run up to the surgery (the strictures basically blocked his bowel), he was vomiting faeces, losing weigh and screaming in pain it was just horrific. We saw the surgeon a short while after the surgery who said they had cut out the crohn's so for the time being he is disease free. The doc was confused about why there was no chronic diarrhoea as normal after the surgery but it was just shrugged off. He said we just had to give everything time to recover and this would take about 6 months. Well we had a very short period of being 'ok' but then the problems started again, slowly at the start but then getting worse and worse. He would eat food and then an hour later the curled up in a ball screaming would happen again. This would last for a few hours until there will be a massive gurgling sound and the pain is gone. Until the next meal .... The GP diagnosed constipation and put him onto strong laxatives. This helped a little. As time goes on he stopped eating again. His weight plummeted again and his anaemia got worse and worse. He went off sick from work as he was sleeping all the time. This was all about two months ago. I was getting pretty scared.
The problem we face it that is impossible to contact the IBD team. If you email you never hear anything back. If you call them you get an answer machine where you leave a message. Then they will call you back - at an unknown time with a withheld number. If you miss that call you get a letter through the post a few days later saying 'we tried to call you no further attempts will be made' so you leave a message again and pray you will be around to get the call. I did eventually get through to the IBD team who just said it was constipation and to take more laxatives. A month ago he was really ill, he was vomiting bile up constantly. I had enough and took him to A&E. There he was admitted and was in hospital for 12 days - where they did precisely NOTHING!!!! Nothing at all was done. Ok they did an x-ray which showed his entire bowel (small and large) was filled with 'rocks' of faeces and then he had a CT scan which failed because he was too dehydrated to have a needle put into his arm but very fuzzily showed the twisted bowel. Then he was basically left to starve which eventually untwisted the twist in his bowel after a four days of no food. His surgeon eventually came to see him after he had been in for 6 days apologised for the incompetency of his registrar and that if they had put in the NG tube to decompress his bowels as they should have done he would have been home by now. He said it was probably adhesions caused by the surgery which had caused the bowel to twist but in the majority of cases when the bowel had untwisted it would be ok from then on. Hmmm colour me not convinced. When we left hospital we asked about follow up and was told that our pre existing appointment in May is close enough to be considered the follow up. They promised an MRE scan appointment will come though within two weeks. After much chasing he is having his MRE scan done in two weeks time - 5 weeks since he left the hospital.
Right now I am sitting here listening to him screaming in pain because he ate earlier. The pain is always in the same place - where the twist in his bowel was a month ago. We are both utterly exhausted. He is not sleeping though the night because of the pain. I am unable to get though to the IBD team for help and he cannot see the point of returning to hospital as he can starve himself at home for four days if it gets that bad again. Also he is about to run out of full pay sick leave and he says he cannot go off sick from work again so soon after being off for three months - he is still on a phased return as it is. My argument is that he needs to be constantly hasselling the hospital for help and keep being admitted is a good was to hassel them he is nothing to them so he has to fight for them to take notice of him - he is not convinced it would do any good. And then I listen to him sobbing that he cannot deal with this level of pain anymore. Mentally it is destroying him as much as the lack of nutrition is physically destroying him. I don't know how long he can actually keep doing this. He has been in constant agony from this for well over a year and a half now (took ages to fight for the surgery in the first place).
I honestly do not know what to do now. Take him to A&E again and repeat the very half hearted experience we had last time or hope he can wait two weeks for the MRE scan when hopefully we will find out what is really going on inside. The doctors just seem to be shrugging this off as just a normal side effect of surgery - which it may be but it is destroying him. The worst thing is he is iller now than he was before his surgery! He may be Crohn's free but there is still something going very wrong with his bowels. I am wondering if the crohn's is causing ulcers in other areas but all his bloods show he is not fighting any inflammation at the moment.
I just feel so overwhelmed with all of this. I feel utterly abandoned by the doctors, I am worried about the impact on his employment and financially of him being hospitalised again, I am not coping with seeing him curled up screaming in pain all of the time or sobbing and punching things shouting that he cannot deal with this anymore. I am struggling to see him looking like a skin covered skeleton with less energy than a sloth. I am scared about what is actually going on inside him.
I was reading world MAP day literature and they saying is 'I want my partner cured not managed'. All I could think of was I would love for him to be managed right now!!!
So yes sorry that was long. I am writing all of this without his consent - I dont even know if he uses this forum but I am at my wits end with this and really need help, suggestions, experiences, anything.
