This is a hard topic. Crohn’s is a shitty and unrelenting disease and most people live in a world with the model : get sick get help get better. But with crohn’s it’s rinse and repeat.
I once bumped in to an old friend who had been close and knew how sick I was. And I know most informed people know that there is no cure for Crohn’s. But when he greeted me he was trying to be somewhat facetious and so he said something like « so did you beat it? » presumably, I had told him that I would. And I did. over and over. But of course, it’s Crohn’s and so it just keeps coming back. Some can longer remission periods, so far my longest has been 6 years. But I beat it, as in, I stay alive, losing bits and pieces every time, having to lower my definition of « doing okay » and raise the amount of pain and suffering that is okay everytime and everyone, mostly nurses and doctors always comment on how dedicated and committed to my health I am. I see it as having no choice. Bad health decisions can make some people feel shitty, but for us, they can put us in the ICU.
(and often we end up there anyway even with good decisions.
So I get that it is challenging to deal with someone like that, who is never really getting better. But I’m not a demanding person. I have always handled everything on my own. Even when I was married, my wife never so much as handed me a piece of gauze. During a particularly difficult flare-up, when i was vomiting huge amounts (6-9 litres) every day for 18 days straight and in and out of ER for hydration, my wife would get upset with me if I didn’t clean the washroom after a vomitting episode, she would drag me out of bed and tell me to clean it up. Mostly, it was splatter around the toilet, but this one time I got upset with her because when I got to the washroom, it was just one little stain the size of a dime!
She didn’t want me to spend money on taxis. I still remember the face of my surgeon who was at North York general (north Toronto) when I lived in southwest Toronto (about 2 hour public transit commute) when I came to my one-week after check out follow-up ( that was after surgery #1, and 2 months in the ICU with toxic megacolon, internal bleeding and then 1 week in hospital. And he asked « who is driving you home » I showed him my buss pass.
Another time when I still had my colon, I was bleeding so much that I had to wear diapers to contain the blood and my wife got really upset with me because some of the blood came out of the diaper. It didn’t stain the mattress because I had a pad underneath me but some of my blood got onto her. “You need to change your diapers more often ! She was raving and pacing!
Obviously, we are now divorced. I was referred to the women’s college domestic violence unit by my GP and over the years, I have joined support groups and I m pretty much aware of the toxicity of my relationships throughout my life, friends, girlfriends, parents, siblings.
I’ve done a lot of work on myself and I am okay with myself. I don’t feel loneliness. But I have few friends. My two boys are my favorite people. After that, my cats.
But I noticed numerous times while I was in hospital, that I get very few visitors. I’m always a nurse favorite and get along with every body but one nurse who was a bit direct, said to me: how come no one ever visits you? And when I told her that my wife and all our close friends had all gone on vacation together, she got upset because I then told her that it wasn’t because the trip had already been planned, indeed they all specifically decided to go then because it was a way to support my wife emotionally while I was in hospital. (every one saw my wife as this sacrificing nurse-wife)
One friend stayed on our couch for a week once after surgery #9 or #10, while I was going back to university for my teacher’s degree and he was surprised that I did not only everything pertaining to my illness (I had a really bad wound care problem at the time) but also all the housework and I am embarrassed that I got upset with him when he qualified my wife as « doing nothing » I yelled at him, I truly regret to admit, « she has a full time job, I’m just a student! » It became a whole argument in which he pointed out all the teaching and translation jobs that I did.
but she still makes more money than I do, and I have more free-time because I am a student.
…with Crohn’s, he added and she works in a sales office.
Interestingly this friend never lifted a finger to help me, even during that week.
Everybody always seems to claim that I am okay doing it on my own.
But once, my roommate in the hospital was an italian guy with bowel cancer and the nurse would always complain that there were too much of his family in the room, that it would bother me and the hospital had a maximum for each patient, I spoke up and said that he could take my spots as well because I liked his family. After that our curtains were always open and his whole family embraced me into the fold. It felt really great. And they were all so nice.
But it made me think of my own family, who never even treated me like a sick guy, I thought good intentioned because they never wanted to make me feel different.
But they too have gone on full on family vacations where they rent out adjoining cabins and I’m never invited. My dad is always like but you can’t come, you have surgery. Once, I was in a remission and he said, we all thought you wouldn’t want to come, it’s at the beach, and with your crohn’s you wouldn’t be able to go the scuba diving with us and so many things you can’t eat. No it’s better like this. We’ll do a video chat altogether when we get there.
Again, I’m not playing mini violins for myself here. I am a simple home body type and perhaps I would not have like it there. But it started to bug me when I had kids (I am the youngest and so had kids also) but then they would be like, your kids are so much younger, we just don’t think it would be compatible.
My cousin stayed at my place with his son for a whole week when I was living in Toronto, and we spent the whole week doing stuff together and it was literally the first person in my entire family (both sides) who had ever visited me but then in the last day he went to brunch with my dad and my brother, his wife and their kids and went out of his way to make sure that I don’t find out about it (my dad told me) and I got upset because they also excluded my boys.
Again, it was nothing mean nor personal they said, I wouldn’t like it they said.
And even my friends. I’ve had so many friends dissapear over the years, and one was honest and said that it was weariness from me being sick « all the time »
Meanwhile, I have nurses and doctors citing my quick and strong recoveries. And so I am more not sick than sick. But he was like, even when you’re better, you still have Crohn’s, like you can’t drink alcohol, you don’t eat any junk food, and you’re always in pain from all your arthritis symptoms and I found myself defending myself by how well I do my job and how involved I am. And all he said is « yeah I don’t know how you do it. If I had your level of disease, I’d just stay in bed all day. »
The friends that have remain, call me on the phone, I am often their confidante and we are very close, but I don’t actually count within their bff circles, never invited to anything ever really. They calm me after their bday party to tell me how it went.
Sorry for the long post. This whole thing started in my head because my blockage which I thought was clearing, is actually not (so yeah I didn’t punch crohn’s hard enough I guess ;-)
And this morning my Dad who is in Quebec city with my entire family texted me that I could send him text updates but that he couldn’t talk to me because « there are too many people here »
And i thought, that italian family would all be piled up in my room or crowding each other on a video chat.
And again, emotionally I’m fine dealing with my stuff alone in hospital, but I’m curious about what it is that always makes me the peripheral, secret friend, excluded back sheep. My family always made me feel that it was because of the Crohn’s, but I am curious.
In movies and tv shows, families and friends always rally around the sick family member (notably in the show Rosewood for eg)
But in real life. Anyone else feel that they may be a bit neglected because of their Crohn’s?
(again sorry for the long posts and sorry if there are typos)
No time to reread as my son just texted me (I know HE likes me) and so I’m gonna try to facetime with him.
I once bumped in to an old friend who had been close and knew how sick I was. And I know most informed people know that there is no cure for Crohn’s. But when he greeted me he was trying to be somewhat facetious and so he said something like « so did you beat it? » presumably, I had told him that I would. And I did. over and over. But of course, it’s Crohn’s and so it just keeps coming back. Some can longer remission periods, so far my longest has been 6 years. But I beat it, as in, I stay alive, losing bits and pieces every time, having to lower my definition of « doing okay » and raise the amount of pain and suffering that is okay everytime and everyone, mostly nurses and doctors always comment on how dedicated and committed to my health I am. I see it as having no choice. Bad health decisions can make some people feel shitty, but for us, they can put us in the ICU.
(and often we end up there anyway even with good decisions.
So I get that it is challenging to deal with someone like that, who is never really getting better. But I’m not a demanding person. I have always handled everything on my own. Even when I was married, my wife never so much as handed me a piece of gauze. During a particularly difficult flare-up, when i was vomiting huge amounts (6-9 litres) every day for 18 days straight and in and out of ER for hydration, my wife would get upset with me if I didn’t clean the washroom after a vomitting episode, she would drag me out of bed and tell me to clean it up. Mostly, it was splatter around the toilet, but this one time I got upset with her because when I got to the washroom, it was just one little stain the size of a dime!
She didn’t want me to spend money on taxis. I still remember the face of my surgeon who was at North York general (north Toronto) when I lived in southwest Toronto (about 2 hour public transit commute) when I came to my one-week after check out follow-up ( that was after surgery #1, and 2 months in the ICU with toxic megacolon, internal bleeding and then 1 week in hospital. And he asked « who is driving you home » I showed him my buss pass.
Another time when I still had my colon, I was bleeding so much that I had to wear diapers to contain the blood and my wife got really upset with me because some of the blood came out of the diaper. It didn’t stain the mattress because I had a pad underneath me but some of my blood got onto her. “You need to change your diapers more often ! She was raving and pacing!
Obviously, we are now divorced. I was referred to the women’s college domestic violence unit by my GP and over the years, I have joined support groups and I m pretty much aware of the toxicity of my relationships throughout my life, friends, girlfriends, parents, siblings.
I’ve done a lot of work on myself and I am okay with myself. I don’t feel loneliness. But I have few friends. My two boys are my favorite people. After that, my cats.
But I noticed numerous times while I was in hospital, that I get very few visitors. I’m always a nurse favorite and get along with every body but one nurse who was a bit direct, said to me: how come no one ever visits you? And when I told her that my wife and all our close friends had all gone on vacation together, she got upset because I then told her that it wasn’t because the trip had already been planned, indeed they all specifically decided to go then because it was a way to support my wife emotionally while I was in hospital. (every one saw my wife as this sacrificing nurse-wife)
One friend stayed on our couch for a week once after surgery #9 or #10, while I was going back to university for my teacher’s degree and he was surprised that I did not only everything pertaining to my illness (I had a really bad wound care problem at the time) but also all the housework and I am embarrassed that I got upset with him when he qualified my wife as « doing nothing » I yelled at him, I truly regret to admit, « she has a full time job, I’m just a student! » It became a whole argument in which he pointed out all the teaching and translation jobs that I did.
but she still makes more money than I do, and I have more free-time because I am a student.
…with Crohn’s, he added and she works in a sales office.
Interestingly this friend never lifted a finger to help me, even during that week.
Everybody always seems to claim that I am okay doing it on my own.
But once, my roommate in the hospital was an italian guy with bowel cancer and the nurse would always complain that there were too much of his family in the room, that it would bother me and the hospital had a maximum for each patient, I spoke up and said that he could take my spots as well because I liked his family. After that our curtains were always open and his whole family embraced me into the fold. It felt really great. And they were all so nice.
But it made me think of my own family, who never even treated me like a sick guy, I thought good intentioned because they never wanted to make me feel different.
But they too have gone on full on family vacations where they rent out adjoining cabins and I’m never invited. My dad is always like but you can’t come, you have surgery. Once, I was in a remission and he said, we all thought you wouldn’t want to come, it’s at the beach, and with your crohn’s you wouldn’t be able to go the scuba diving with us and so many things you can’t eat. No it’s better like this. We’ll do a video chat altogether when we get there.
Again, I’m not playing mini violins for myself here. I am a simple home body type and perhaps I would not have like it there. But it started to bug me when I had kids (I am the youngest and so had kids also) but then they would be like, your kids are so much younger, we just don’t think it would be compatible.
My cousin stayed at my place with his son for a whole week when I was living in Toronto, and we spent the whole week doing stuff together and it was literally the first person in my entire family (both sides) who had ever visited me but then in the last day he went to brunch with my dad and my brother, his wife and their kids and went out of his way to make sure that I don’t find out about it (my dad told me) and I got upset because they also excluded my boys.
Again, it was nothing mean nor personal they said, I wouldn’t like it they said.
And even my friends. I’ve had so many friends dissapear over the years, and one was honest and said that it was weariness from me being sick « all the time »
Meanwhile, I have nurses and doctors citing my quick and strong recoveries. And so I am more not sick than sick. But he was like, even when you’re better, you still have Crohn’s, like you can’t drink alcohol, you don’t eat any junk food, and you’re always in pain from all your arthritis symptoms and I found myself defending myself by how well I do my job and how involved I am. And all he said is « yeah I don’t know how you do it. If I had your level of disease, I’d just stay in bed all day. »
The friends that have remain, call me on the phone, I am often their confidante and we are very close, but I don’t actually count within their bff circles, never invited to anything ever really. They calm me after their bday party to tell me how it went.
Sorry for the long post. This whole thing started in my head because my blockage which I thought was clearing, is actually not (so yeah I didn’t punch crohn’s hard enough I guess ;-)
And this morning my Dad who is in Quebec city with my entire family texted me that I could send him text updates but that he couldn’t talk to me because « there are too many people here »
And i thought, that italian family would all be piled up in my room or crowding each other on a video chat.
And again, emotionally I’m fine dealing with my stuff alone in hospital, but I’m curious about what it is that always makes me the peripheral, secret friend, excluded back sheep. My family always made me feel that it was because of the Crohn’s, but I am curious.
In movies and tv shows, families and friends always rally around the sick family member (notably in the show Rosewood for eg)
But in real life. Anyone else feel that they may be a bit neglected because of their Crohn’s?
(again sorry for the long posts and sorry if there are typos)
No time to reread as my son just texted me (I know HE likes me) and so I’m gonna try to facetime with him.
