Best friend been diagnosed with ulcerative colitis.
Discussion
Hi, as title, my best mate, who's 43, has just been diagnosed with the above. His family on both sides have a history of this. I think he's known it's been coming for a long time now. After various brief trials on different meds with no improvement, he was given an 8 week course of steroids to take. After just over a week of these, there was no discernable difference and he was admitted to the short stay ward of his local hospital on Wednesday and discharged last night, having been given a larger dose of steroids intravenously.
These are early days for him with this with regard to actually knowing for sure he has it and coming to terms with the changes he will now have to face, including the possibility that it may decline into Chrones disease. In some respects, he was fortunate enough to be tall and well built, and can afford to lose weight in a way that may help him rather than cause him to lose much strength, but after a few short weeks of struggling to be able to eat much and having given up alcohol, the difference in his appearance is marked.
I understand that once the condition is under control, there are still periodic flare-ups in the symptoms, however he isn't at the stage where it is fully under control yet, although the hospital were happy to release him. They've given him another, stronger course of steroids to take. I also understand that stress is a, possibly major, contributory factor in the condition. He's obviously worried about his ability to work in future, his job is stressful, and he's voiced concerns about not being able to go back. His employer are sympathetic and his job currently remains his for as long as he needs to be away, but he can't tell them how long that will be, which is obviously stressful in itself.
Myself and my wife are very close to him and his wife, and we're very concerned at how things are for him at the moment. I'm very much hoping that someone on here who has been unfortunate enough to have gone through this and come out of the other side with good results can say something positive about his possibilities. Although he is still in otherwise good health, his recent sudden decline with regard to this illness has appalled us, and input from someone with experience might give us and him something to aim for.
These are early days for him with this with regard to actually knowing for sure he has it and coming to terms with the changes he will now have to face, including the possibility that it may decline into Chrones disease. In some respects, he was fortunate enough to be tall and well built, and can afford to lose weight in a way that may help him rather than cause him to lose much strength, but after a few short weeks of struggling to be able to eat much and having given up alcohol, the difference in his appearance is marked.
I understand that once the condition is under control, there are still periodic flare-ups in the symptoms, however he isn't at the stage where it is fully under control yet, although the hospital were happy to release him. They've given him another, stronger course of steroids to take. I also understand that stress is a, possibly major, contributory factor in the condition. He's obviously worried about his ability to work in future, his job is stressful, and he's voiced concerns about not being able to go back. His employer are sympathetic and his job currently remains his for as long as he needs to be away, but he can't tell them how long that will be, which is obviously stressful in itself.
Myself and my wife are very close to him and his wife, and we're very concerned at how things are for him at the moment. I'm very much hoping that someone on here who has been unfortunate enough to have gone through this and come out of the other side with good results can say something positive about his possibilities. Although he is still in otherwise good health, his recent sudden decline with regard to this illness has appalled us, and input from someone with experience might give us and him something to aim for.
It’s a bit odd that he’s been in hospital but hasn’t yet been diagnosed. Generally he’d have had a full colonoscopy and blood tests which would’ve confirmed things.
UC can’t become Crohns, but one could be diagnosed as the other. You can have Crohns of the colon only, but any ulcers found outside of the colon means it’s definitely not UC.
In terms of living with one or the other, there’s more medical options available for Crohns, but better surgical outcomes for UC. (Removing the Colon removes the IBD) That’ll leave you with a stoma or j pouch.
Living life with IBD? Plenty of people do it and it sounds as though he’ll know what to expect from family connections. The biggest things friends can do is have an awareness of fatigue, joint ache and dietary requirements.
Eg: offering to go around for a quiet night in, instead of a meal out. Bringing takeaway you know they won’t suffer with. Helping with bigger house/garden projects, that sort of thing.
Life doesn’t stop with IBD, it just gets a bit tougher!
UC can’t become Crohns, but one could be diagnosed as the other. You can have Crohns of the colon only, but any ulcers found outside of the colon means it’s definitely not UC.
In terms of living with one or the other, there’s more medical options available for Crohns, but better surgical outcomes for UC. (Removing the Colon removes the IBD) That’ll leave you with a stoma or j pouch.
Living life with IBD? Plenty of people do it and it sounds as though he’ll know what to expect from family connections. The biggest things friends can do is have an awareness of fatigue, joint ache and dietary requirements.
Eg: offering to go around for a quiet night in, instead of a meal out. Bringing takeaway you know they won’t suffer with. Helping with bigger house/garden projects, that sort of thing.
Life doesn’t stop with IBD, it just gets a bit tougher!
Thanks for the replies. Sorry if my description of events is vague or misleading. It's possible I haven't fully understood the situation.
He's been diagnosed, as things stand, with ulcerative colitis. He was given suppositories and supplementary meds initially which seemed to have little effect. He was then given steroids which again, had little effect. After a two day stay in hospital this week during which he was given stronger steroids, he was allowed home yesterday with more strong steroids and advice about the possibility of either reasonably frequent future visits for injections, or having the option of ( fortnightly? ) injections at home, administered by him.
We're going over there tonight, the exact scenario described above, quiet night at theirs with a takeaway. My Mrs is a great cook, she sees finding out what he can and can't eat and then preparing stuff he can enjoy as a challenge. I want to talk to him about his finances with a view to helping with them if going back to work becomes difficult for an extended period. His other half works at the same place he does, but his was / is the main source of income. I think it'll be difficult for him to accept that kind of help, but he'd do the same for me if the situation was reversed.
I'll probably be able to find out a bit more tonight and be able to post with more info soon. Again, thanks for the replies.
He's been diagnosed, as things stand, with ulcerative colitis. He was given suppositories and supplementary meds initially which seemed to have little effect. He was then given steroids which again, had little effect. After a two day stay in hospital this week during which he was given stronger steroids, he was allowed home yesterday with more strong steroids and advice about the possibility of either reasonably frequent future visits for injections, or having the option of ( fortnightly? ) injections at home, administered by him.
We're going over there tonight, the exact scenario described above, quiet night at theirs with a takeaway. My Mrs is a great cook, she sees finding out what he can and can't eat and then preparing stuff he can enjoy as a challenge. I want to talk to him about his finances with a view to helping with them if going back to work becomes difficult for an extended period. His other half works at the same place he does, but his was / is the main source of income. I think it'll be difficult for him to accept that kind of help, but he'd do the same for me if the situation was reversed.
I'll probably be able to find out a bit more tonight and be able to post with more info soon. Again, thanks for the replies.
If he is open to dietary change he could try reading these:
https://meatheals.com/category/digestion/ulcerativ...
Basically, remove all the causes. It's a bit restrictive, but he might consider it worth it.
https://meatheals.com/category/digestion/ulcerativ...
Basically, remove all the causes. It's a bit restrictive, but he might consider it worth it.
grumbledoak said:
If he is open to dietary change he could try reading these:
https://meatheals.com/category/digestion/ulcerativ...
Basically, remove all the causes. It's a bit restrictive, but he might consider it worth it.
Thanks, regardless of the fact that he has no choice really, he is open to anything that may help, and has already made significant changes to his lifestyle. I'll pass it on, cheers.https://meatheals.com/category/digestion/ulcerativ...
Basically, remove all the causes. It's a bit restrictive, but he might consider it worth it.
The difficulty with IBD is everyone’s experience is completely different. What meds work, what food can be tolerated, level/types of pain is all individual.
I can tell you some things that have worked for me, but that’s no indication it’d be the same for him:
Food - no greens, peas, sweet corn, beans, brown bread/rice/pasta. Surprisingly chilli/chilli flakes on everything helps.
Drink - no beer, not even one. Alcohol not great in general, but a few spirits is doable on a special occasion. No fruit juice, maybe a clear apple juice as a treat.
Medication - I was at my most consistent on Azathioprine (daily tablets) and Vedolizumab (4 weekly infusions). I’ve tried pretty much everything available and these clicked for me. He needs to give everything a go though to see what works for him. Except Azacol - it’s the devils work, a truly horrendous drug!
Life balance - keep down stress, sleep well, take naps. I worked through severe flare ups - going to the toilet 10+ times a day, pure liquid, regular accidents. Some people can’t or won’t live like that but I wouldn’t let my condition control me.
I did have to live life differently though - planning routes to anywhere based on toilet stops en route, working out what times pubs opened/supermarkets etc. But once I went onto the Vedolizumab had a good three years of no issues.
I can tell you some things that have worked for me, but that’s no indication it’d be the same for him:
Food - no greens, peas, sweet corn, beans, brown bread/rice/pasta. Surprisingly chilli/chilli flakes on everything helps.
Drink - no beer, not even one. Alcohol not great in general, but a few spirits is doable on a special occasion. No fruit juice, maybe a clear apple juice as a treat.
Medication - I was at my most consistent on Azathioprine (daily tablets) and Vedolizumab (4 weekly infusions). I’ve tried pretty much everything available and these clicked for me. He needs to give everything a go though to see what works for him. Except Azacol - it’s the devils work, a truly horrendous drug!
Life balance - keep down stress, sleep well, take naps. I worked through severe flare ups - going to the toilet 10+ times a day, pure liquid, regular accidents. Some people can’t or won’t live like that but I wouldn’t let my condition control me.
I did have to live life differently though - planning routes to anywhere based on toilet stops en route, working out what times pubs opened/supermarkets etc. But once I went onto the Vedolizumab had a good three years of no issues.
I had it very bad in the beginning: 15+ s
ts a day, my weight dropped to seven stone. The hospital were talking about putting a feeding tube into my stomach. I had to take steroids for six months, and then I was put on mesalazine (asacol), which I've been on for twelve years. It's only in the past few months that the tablets have started losing effectiveness, and I've been put on self-administered injections of adalimumab (amgevita). These are not controlling it completely - I'm still at three toilet visits a day, so I'm waiting for a follow up appointment to see what the next step is.
All in all I've been alright for the majority of the past twelve years. Yes I've had flare ups, days when I had to run to the toilet or had severe abdominal pain. I'm a world away from the days when I weighed seven stone though
I really can't complain. My only worry is thinking about the future, the potential for colon cancer or needing a stoma - thinking of these terrifies me!
Like bristolbaron above says: it's very important to manage your stress levels. I've been admitted to hospital three times - all of them when I was working on a production line and severely stressed. I left that job in 2015, and I haven't been admitted to hospital for five years now.
ts a day, my weight dropped to seven stone. The hospital were talking about putting a feeding tube into my stomach. I had to take steroids for six months, and then I was put on mesalazine (asacol), which I've been on for twelve years. It's only in the past few months that the tablets have started losing effectiveness, and I've been put on self-administered injections of adalimumab (amgevita). These are not controlling it completely - I'm still at three toilet visits a day, so I'm waiting for a follow up appointment to see what the next step is.All in all I've been alright for the majority of the past twelve years. Yes I've had flare ups, days when I had to run to the toilet or had severe abdominal pain. I'm a world away from the days when I weighed seven stone though
I really can't complain. My only worry is thinking about the future, the potential for colon cancer or needing a stoma - thinking of these terrifies me!Like bristolbaron above says: it's very important to manage your stress levels. I've been admitted to hospital three times - all of them when I was working on a production line and severely stressed. I left that job in 2015, and I haven't been admitted to hospital for five years now.
Edited by Mercury00 on Sunday 29th September 09:39
Again, thanks for the replies. And the honesty in talking about it. It looks, as someone looking in from the outside, like a horrifying thing to live with, but it sounds, like most things, something you learn to live with.
The four of us have got into a routine over the years whereby they generally stay over at ours most weekends, as they live in the suburbs and we're in the city centre. For the first time in about 6 years, we went to theirs and had a takeaway, and generally had such a good night that we didn't talk too much about the situation at hand. So I didn't learn much more last night, however, the two previous posters have described his situation pretty accurately.
He has a hospital appointment on Thursday, my wife intends to take him to this as he isn't sure what will be required of him when he gets there. She also intends to talk to him whilst doing this about his long term view of the situation as it develops so we have a better idea of how we can best help.
The four of us have got into a routine over the years whereby they generally stay over at ours most weekends, as they live in the suburbs and we're in the city centre. For the first time in about 6 years, we went to theirs and had a takeaway, and generally had such a good night that we didn't talk too much about the situation at hand. So I didn't learn much more last night, however, the two previous posters have described his situation pretty accurately.
He has a hospital appointment on Thursday, my wife intends to take him to this as he isn't sure what will be required of him when he gets there. She also intends to talk to him whilst doing this about his long term view of the situation as it develops so we have a better idea of how we can best help.
Mercury00 said:
My only worry is thinking about the future, the potential for colon cancer or needing a stoma - thinking of these terrifies me!
I don’t know if it’ll make you feel better or worse, but I’m currently in hospital recovering from having my colon removed due to dysplasia (precancerous adenomas). I have a stoma, but will definitely never have colon cancer! It’s something else to get used to, but no UC & no Cancer means it isn’t the end of the world. bristolbaron said:
I don’t know if it’ll make you feel better or worse, but I’m currently in hospital recovering from having my colon removed due to dysplasia (precancerous adenomas). I have a stoma, but will definitely never have colon cancer! It’s something else to get used to, but no UC & no Cancer means it isn’t the end of the world.
All the best with your recovery, hope it makes life easier in future. Thanks for your input on the thread, I feel like anything I can say to my mate that's positive is something to cherish at the mo!I’m still waiting on my colonoscopy and my flare up has died down over the past month. One thing I did was buy via my protein the weight gain powder. Just oats and protein and it’s helped me with making sure I’m getting some nutrition. If he is losing lots of weight then it may be an option. Everyone is different but the drinks have not affected my stomach issues.
burritoNinja said:
I’m still waiting on my colonoscopy and my flare up has died down over the past month. One thing I did was buy via my protein the weight gain powder. Just oats and protein and it’s helped me with making sure I’m getting some nutrition. If he is losing lots of weight then it may be an option. Everyone is different but the drinks have not affected my stomach issues.
Yeah, his weight in noticeably down, I'll mention it, cheers.bristolbaron said:
I don’t know if it’ll make you feel better or worse, but I’m currently in hospital recovering from having my colon removed due to dysplasia (precancerous adenomas). I have a stoma, but will definitely never have colon cancer! It’s something else to get used to, but no UC & no Cancer means it isn’t the end of the world.
How long did you have UC for before needing surgery, if you don't mind me asking? I have regular colonoscopies, and I never really feel a sense of relief when they're clear, because I'm always thinking ahead to the next one. Have been in hospital twice with UC. First time when I was initially diagnosed at same time as they took out my appendix as it was inflamed.
2nd time they were keen to cut me open but I resisted that, was on a long course of steroids after that, but since then no issues.
On pentassa (slow release granule option) currently which has kept it under control for the last few years now I keep to it strictly. If I ever feel quirky I just drop down to a strict diet of safe foods, rest of the time I don’t need to limit the food I have.
Pentasa is one of the first options with least side affects, they they have other stronger options which come with some not so nice side affects. The cutting option comes with long term issues such as inflections, clogging etc so if the steroids bring it under control it is worth trying the non surgical option.
2nd time they were keen to cut me open but I resisted that, was on a long course of steroids after that, but since then no issues.
On pentassa (slow release granule option) currently which has kept it under control for the last few years now I keep to it strictly. If I ever feel quirky I just drop down to a strict diet of safe foods, rest of the time I don’t need to limit the food I have.
Pentasa is one of the first options with least side affects, they they have other stronger options which come with some not so nice side affects. The cutting option comes with long term issues such as inflections, clogging etc so if the steroids bring it under control it is worth trying the non surgical option.
Edited by cw2k on Sunday 29th September 19:44
Edited by cw2k on Sunday 29th September 19:46
grumbledoak said:
If he is open to dietary change he could try reading these:
https://meatheals.com/category/digestion/ulcerativ...
Basically, remove all the causes. It's a bit restrictive, but he might consider it worth it.
Yep, diet can be used to control things.https://meatheals.com/category/digestion/ulcerativ...
Basically, remove all the causes. It's a bit restrictive, but he might consider it worth it.
Another little understood joy of inflammatory bowel disease is that it can increase the risk of other morbidities, for example prostate cancer.
cw2k said:
On pentassa (slow release granule option) currently which has kept it under control for the last few years now I keep to it strictly. If I ever feel quirky I just drop down to a strict diet of safe foods, rest of the time I don’t need to limit the food I have.
This is the stuff with Mesalazine? I read the notes from his discussion with his Doctor when he was first being examined, and this is what he was initially prescribed. In his case, it didn't make any discernible difference, unfortunately, although it's still early days.Gassing Station | Health Matters | Top of Page | What's New | My Stuff