Ulcerative Colitis

[Dalianwanda]

I’ve spent the last week in hospital trying to sort a bowel condition. Although its not shifting as quickly as hoped its diagnosed as Ulcerative Colitus. Todays the first day i’ve noticed a bit of positive change so I’m hopeful i can get right soon (they have move me onto a more intense treatment)

I suppose i’m just checking in to see if anyone else lives with the condition and how you find it?

I’m plant based, regular exercise, don’t do much sugar. My worry is even more limitation i suppose. Probably something i just have to suck up if i want to reduce future flare ups. I’ve also had a remote session with a kinesiologist to look at supplements to go with medicine.

I realise it’s a very personal subject but even writing this helps me come to terms with it.

[JimBHibees]

I’ve spent the last week in hospital trying to sort a bowel condition. Although its not shifting as quickly as hoped its diagnosed as Ulcerative Colitus. Todays the first day i’ve noticed a bit of positive change so I’m hopeful i can get right soon (they have move me onto a more intense treatment)

I suppose i’m just checking in to see if anyone else lives with the condition and how you find it?

I’m plant based, regular exercise, don’t do much sugar. My worry is even more limitation i suppose. Probably something i just have to suck up if i want to reduce future flare ups. I’ve also had a remote session with a kinesiologist to look at supplements to go with medicine.

I realise it’s a very personal subject but even writing this helps me come to terms with it.

Hope you get well soon. :aok:

[EskbankHibby]

I’ve spent the last week in hospital trying to sort a bowel condition. Although its not shifting as quickly as hoped its diagnosed as Ulcerative Colitus. Todays the first day i’ve noticed a bit of positive change so I’m hopeful i can get right soon (they have move me onto a more intense treatment)

I suppose i’m just checking in to see if anyone else lives with the condition and how you find it?

I’m plant based, regular exercise, don’t do much sugar. My worry is even more limitation i suppose. Probably something i just have to suck up if i want to reduce future flare ups. I’ve also had a remote session with a kinesiologist to look at supplements to go with medicine.

I realise it’s a very personal subject but even writing this helps me come to terms with it.

If memory serves it’s the same condition Darren Fletcher battled with throughout his career. Hopefully if a professional footballer managed to function (albeit in a modified way) it may not be as limiting as you fear.

All the best to you.

[ronaldo7]

I’ve spent the last week in hospital trying to sort a bowel condition. Although its not shifting as quickly as hoped its diagnosed as Ulcerative Colitus. Todays the first day i’ve noticed a bit of positive change so I’m hopeful i can get right soon (they have move me onto a more intense treatment)

I suppose i’m just checking in to see if anyone else lives with the condition and how you find it?

I’m plant based, regular exercise, don’t do much sugar. My worry is even more limitation i suppose. Probably something i just have to suck up if i want to reduce future flare ups. I’ve also had a remote session with a kinesiologist to look at supplements to go with medicine.

I realise it’s a very personal subject but even writing this helps me come to terms with it.

Get well soon J. Hopefully you're up and about soon enough.

[Dalianwanda]

Hope you get well soon. :aok:

Thanks so much 💚

[Dalianwanda]

If memory serves it’s the same condition Darren Fletcher battled with throughout his career. Hopefully if a professional footballer managed to function (albeit in a modified way) it may not be as limiting as you fear.

All the best to you.

Yeah he was in my head about dealing with it. Need to have a look for some interviews he’s done. I’m trying to look at it as adaption rather than limitation.

Thankyou!

[Dalianwanda]

Get well soon J. Hopefully you're up and about soon enough.

Cheers dude..Not the best time to be stuck in hospital but i’m getting great care. Hopefully a win tonight will boost the system 💚

[Hiber-nation]

I’ve spent the last week in hospital trying to sort a bowel condition. Although its not shifting as quickly as hoped its diagnosed as Ulcerative Colitus. Todays the first day i’ve noticed a bit of positive change so I’m hopeful i can get right soon (they have move me onto a more intense treatment)

I suppose i’m just checking in to see if anyone else lives with the condition and how you find it?

I’m plant based, regular exercise, don’t do much sugar. My worry is even more limitation i suppose. Probably something i just have to suck up if i want to reduce future flare ups. I’ve also had a remote session with a kinesiologist to look at supplements to go with medicine.

I realise it’s a very personal subject but even writing this helps me come to terms with it.

My daughter had it as a teenager. She coped ok with it but at its worst she was on 7 steroid tablets a day. I suppose it was fairly mild compared to a lot of folk but it just kept flaring up every time she was off the steroids. Her doctor was fantastic, managed to control it within a year although she had to keep taking prednisolone. After 13 years with only the occasional flare up she was finally told she could stop taking the medication earlier in the year.

All depends on how serious it is, the severity can vary dramatically. And treatment will probably have changed. Hope it all goes well :aok:

[oconnors_strip]

Alex McLeish’s oldest son has it, he set up a charity to help others https://www.crohnsandcolitis.org.uk/

Get well soon and take care

[Dalianwanda]

My daughter had it as a teenager. She coped ok with it but at its worst she was on 7 steroid tablets a day. I suppose it was fairly mild compared to a lot of folk but it just kept flaring up every time she was off the steroids. Her doctor was fantastic, managed to control it within a year although she had to keep taking prednisolone. After 13 years with only the occasional flare up she was finally told she could stop taking the medication earlier in the year.

All depends on how serious it is, the severity can vary dramatically. And treatment will probably have changed. Hope it all goes well :aok:

Thanks so much! That’s great she’s made that progress off the meds.

So much info out there, gonna be a lot of trial and error i think

[Dalianwanda]

Alex McLeish’s oldest son has it, he set up a charity to help others https://www.crohnsandcolitis.org.uk/

Get well soon and take care

Brilliant, thankyou!

[I'm_cabbaged]

Here’s a more local charity https://catherinemcewanfoundation.com/index.php/who-we-are/
They do great work and have raised an amazing amount of money for studies into IBD.
All the best to you mate

[SteveHFC]

Alex McLeish’s oldest son has it, he set up a charity to help others https://www.crohnsandcolitis.org.uk/

Get well soon and take care

I was diagnosed with Crohn's disease around 8 years ago. I have to watch what I eat and drink. I do sometimes struggle with my bowel movements and can get flare ups of mouth ulcers and stomach ulcers occasionally.

[makaveli1875]

My misses has it , shes been dealing with it for 15 years . None of the treatments theyve tried on her do much to help . Its a nasty illness .

[Dalianwanda]

I was diagnosed with Crohn's disease around 8 years ago. I have to watch what I eat and drink. I do sometimes struggle with my bowel movements and can get flare ups of mouth ulcers and stomach ulcers occasionally.

Thanks for sharing. I had my first and only other one a couple a years back. By the time i’d got a colonoscopy it had died down. That’s the big difference with getting admitted, they aren’t letting me out till they can get this bought cleared.

[Dalianwanda]

My misses has it , shes been dealing with it for 15 years . None of the treatments theyve tried on her do much to help . Its a nasty illness .

Sorry to hear that, hope she finds some balance soon.

[Dalianwanda]

Here’s a more local charity https://catherinemcewanfoundation.com/index.php/who-we-are/
They do great work and have raised an amazing amount of money for studies into IBD.
All the best to you mate

Thanks the info i’m actually living in ireland but looks like there’s some really good advice

[ronaldo7]

Cheers dude..Not the best time to be stuck in hospital but i’m getting great care. Hopefully a win tonight will boost the system 💚

Let's hope the signal dropped out after the first 30 minutes. :greengrin

[Dalianwanda]

Let's hope the signal dropped out after the first 30 minutes. :greengrin

After 2nd goal there was only one option to preserve my health 🤒

[Tobias Funke]

Anybody suffering from any stomach/bowel disease such as UC, Crohns, IBS/IBD has my deepest sympathy. My brother was diagnosed with Crohns nearly two years ago and it disabled him badly for a few months. Dreadful illnesses all of them, especially the more serious ones.

[Keith_M]

I’ve spent the last week in hospital trying to sort a bowel condition. Although its not shifting as quickly as hoped its diagnosed as Ulcerative Colitus. Todays the first day i’ve noticed a bit of positive change so I’m hopeful i can get right soon (they have move me onto a more intense treatment)

I suppose i’m just checking in to see if anyone else lives with the condition and how you find it?

I’m plant based, regular exercise, don’t do much sugar. My worry is even more limitation i suppose. Probably something i just have to suck up if i want to reduce future flare ups. I’ve also had a remote session with a kinesiologist to look at supplements to go with medicine.

I realise it’s a very personal subject but even writing this helps me come to terms with it.


I had no idea what this was so I just looked i up... and now wish I hadn't.

You have my utmost sympathies, as it doesn't sound pleasant.

[Dalianwanda]

I had no idea what this was so I just looked i up... and now wish I hadn't.

You have my utmost sympathies, as it doesn't sound pleasant.

Thanks so much...I’m in the right place to get it sorted, that’s the main thing now (although 10 days in trying to rest in hospital starting to take its toll) I’m finally starting to see some improvement. If it keeps up could be out by thursday to complete treatment at home.

[Ozyhibby]

I’ve had Crohns since my early twenties but was only properly diagnosed at 40 back in 2010 when they eventually operated on me and took out half my bowel. It’s a nasty illness. Since the op though I have been in much better shape. I’ve had to modify my lifestyle and rarely drink alcohol now. To be honest that’s been a good thing. I rarely go anywhere that doesn’t have decent facilities etc but apart from that it doesn’t really affect my day to day. I do loads with my kids but if there is a bit of hill walking or long cycles etc to be done with them then my wife does it. All in all, it’s rubbish but manageable. There are worse things to live with.


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[Keith_M]

Thanks so much...I’m in the right place to get it sorted, that’s the main thing now (although 10 days in trying to rest in hospital starting to take its toll) I’m finally starting to see some improvement. If it keeps up could be out by thursday to complete treatment at home.


:aok:

[Alfiembra]

I’ve had Crohns for around 12 years now although I feel quite fortunate to have only really started with symptoms in my 50’s it can be a young persons disease and there is no cure at present. I get regular infusions to treat it with a drug called infliximab and it has changed my life for the better. I spent the first few years on various pills to no effect mesalazine, prednisolone. Got hooked on pred and found it very difficult to get weaned off it. My understanding of UC compared to Crohns is that they are so similar that it is very difficult to differentiate between them but in some cases UC can be treated with surgery and not return. Not so with Crohns it’s a chronic condition. Biggest downside for me is fatigue it drains your energy with a vengeance and I run out of steam with jobs I used to manage no problem very quickly. Again I have been fortunate to have been able to continue working as I had a desk job, if I had a trade that was a physical job I would have been knackered. I’ve never been a drinker or a smoker so I think that’s helped considerably in my case and I’ve not had to change my diet too much either but I do try to avoid stuff that’s too spicy or eat big meals later in the evening. Hope you get better soon. :aok:

[blackpoolhibs]

I've had Chrohns for 18 years, was on pred for a while in the early stages to stabilise me, the went on azathioprine.

Only had the odd flare up in the last few years, that have only lasted a few hours at most, and could have been food poisoning, I will never know?

The main problem I suffer with is sore joints and fatigue, iv'e had years of blood tests that threw up nothing wrong, until a couple of years ago I was told I had fybromalgia.

They wanted me to take an anti depressant that would dull the pain, I forget which one it was, but I said no, I will just put up with it.

I also questioned being on the azathioprine, the doctor said how long have you been on them, I said you are the doctor, you tell me?

Turns out I'd been on them 15 years and they only reccomend you are on them for 4 years.

I'm not on any tablets now, and so far since coming off them I've had one incident that lasted 12 hours at most, and last week I actually had constipation. :greengrin

When I first was diagnosed, it was tough. I lost 6 stone in record time, I was worried as you can imagine, you do think the worst, but the steroids did work, the weight came back, and I do now live a relitively normal life.

It is always at the back of my mind, but it does not rule my life now like it did for a
few years.

Another thing, after being diagnosed with Chrohns all those years ago, I had the camera sent up the jaxi about 4 years ago, and the doctor said and I quote, we may have misdiagnosed Chrohns, and I may have colitis, which he says can burn itself out?:confused:

Hopefully I do and it has.

[Dalianwanda]

I’ve had Crohns for around 12 years now although I feel quite fortunate to have only really started with symptoms in my 50’s it can be a young persons disease and there is no cure at present. I get regular infusions to treat it with a drug called infliximab and it has changed my life for the better. I spent the first few years on various pills to no effect mesalazine, prednisolone. Got hooked on pred and found it very difficult to get weaned off it. My understanding of UC compared to Crohns is that they are so similar that it is very difficult to differentiate between them but in some cases UC can be treated with surgery and not return. Not so with Crohns it’s a chronic condition. Biggest downside for me is fatigue it drains your energy with a vengeance and I run out of steam with jobs I used to manage no problem very quickly. Again I have been fortunate to have been able to continue working as I had a desk job, if I had a trade that was a physical job I would have been knackered. I’ve never been a drinker or a smoker so I think that’s helped considerably in my case and I’ve not had to change my diet too much either but I do try to avoid stuff that’s too spicy or eat big meals later in the evening. Hope you get better soon. :aok:

Thanks so much for taking the time to share..The fatigue thing really resonates with me. For about 8 years Ive been back and forth to the dr re my energy levels. Nothing showed up on any tests but even though I only had (in hindsight) my first flare up 2 years ago I really think this must be the reason. Will be interesting to see if things change with the medication as well as the gut healing work Ive started with a kinesiologist.

Yeah surgery was the option if the remicade didnt work. Although Im pretty grounded watching some of the auld men on my ward struggle with the stoma bag was starting to freak me out. Im so grateful the remicade is finally doing its thing, Ive heard great things about it. I'll be getting infusions every 8 weeks as far as I can tell. Again although the dr said its for life I'm going to do everything I can to make sure thats not the case & can eventually move off it.

[Dalianwanda]

I've had Chrohns for 18 years, was on pred for a while in the early stages to stabilise me, the went on azathioprine.

Only had the odd flare up in the last few years, that have only lasted a few hours at most, and could have been food poisoning, I will never know?

The main problem I suffer with is sore joints and fatigue, iv'e had years of blood tests that threw up nothing wrong, until a couple of years ago I was told I had fybromalgia.

They wanted me to take an anti depressant that would dull the pain, I forget which one it was, but I said no, I will just put up with it.

I also questioned being on the azathioprine, the doctor said how long have you been on them, I said you are the doctor, you tell me?

Turns out I'd been on them 15 years and they only reccomend you are on them for 4 years.

I'm not on any tablets now, and so far since coming off them I've had one incident that lasted 12 hours at most, and last week I actually had constipation. :greengrin

When I first was diagnosed, it was tough. I lost 6 stone in record time, I was worried as you can imagine, you do think the worst, but the steroids did work, the weight came back, and I do now live a relitively normal life.

It is always at the back of my mind, but it does not rule my life now like it did for a
few years.

Another thing, after being diagnosed with Chrohns all those years ago, I had the camera sent up the jaxi about 4 years ago, and the doctor said and I quote, we may have misdiagnosed Chrohns, and I may have colitis, which he says can burn itself out?:confused:

Hopefully I do and it has.

Thanks for sharing, I really appreciate it. Thats great that your off the tablets & the incidents are down.

I lost 2 stone in the month & lying in a hospital bed for 2 weeks has meant all the muscle has gone from my legs and arse...But Im feeling stronger even just in the couple of days Im out and managing to walk 100m or so...I had the lovely experience of getting the camera up the jaxi without sedation!? That memory shall live with me for a while :greengrin

Thats interesting re it burning itself out...Im convinced if I do all the right things I dont have to have this for life.

[PaulSmith]

I've had Chrohns for 18 years, was on pred for a while in the early stages to stabilise me, the went on azathioprine.

Only had the odd flare up in the last few years, that have only lasted a few hours at most, and could have been food poisoning, I will never know?

The main problem I suffer with is sore joints and fatigue, iv'e had years of blood tests that threw up nothing wrong, until a couple of years ago I was told I had fybromalgia.

They wanted me to take an anti depressant that would dull the pain, I forget which one it was, but I said no, I will just put up with it.

I also questioned being on the azathioprine, the doctor said how long have you been on them, I said you are the doctor, you tell me?

Turns out I'd been on them 15 years and they only reccomend you are on them for 4 years.

I'm not on any tablets now, and so far since coming off them I've had one incident that lasted 12 hours at most, and last week I actually had constipation. :greengrin

When I first was diagnosed, it was tough. I lost 6 stone in record time, I was worried as you can imagine, you do think the worst, but the steroids did work, the weight came back, and I do now live a relitively normal life.

It is always at the back of my mind, but it does not rule my life now like it did for a
few years.

Another thing, after being diagnosed with Chrohns all those years ago, I had the camera sent up the jaxi about 4 years ago, and the doctor said and I quote, we may have misdiagnosed Chrohns, and I may have colitis, which he says can burn itself out?:confused:

Hopefully I do and it has.

That's interesting about the azathioprine as I had the same symptoms for years..especially in the hips...and I'd fell out of the system as I had been well for years. It was only me being proactive and contacting the hospital again that meant a chat with the consultant and she immediately took me of the Az. as I'd been on it for too long. That was several years ago and I've just been taking a low dose of mesalazine which has kept the problem at bay.

I've never heard of UC burning itself out but it can go into remission for years.

As we get older its vital that we get the colonospacy (sp) every couple of years though.

[Hiber-nation]

Just realised when I saw PaulSmith's post above that I got my drugs wrong in my post 8 on the thread. My daughter was on azathioprine for 14 years until earlier this year, very small dose. Not prednisolone as I stated although that was what she was prescribed when she first got UC. She's on a low dose of Mesalazine now and has had no symptoms for a long time.

[PaulSmith]

Just realised when I saw PaulSmith's post above that I got my drugs wrong in my post 8 on the thread. My daughter was on azathioprine for 14 years until earlier this year, very small dose. Not prednisolone as I stated although that was what she was prescribed when she first got UC. She's on a low dose of Mesalazine now and has had no symptoms for a long time.


Very similar to myself, mesalazine does seem to keep the UC in remission and glad to read that it’s working well for your daughter.

[Hiber-nation]

Very similar to myself, mesalazine does seem to keep the UC in remission and glad to read that it’s working well for your daughter.

Cheers, glad you are keeping well too.

[CMurdoch]

I’ve spent the last week in hospital trying to sort a bowel condition. Although its not shifting as quickly as hoped its diagnosed as Ulcerative Colitus. Todays the first day i’ve noticed a bit of positive change so I’m hopeful i can get right soon (they have move me onto a more intense treatment)

I suppose i’m just checking in to see if anyone else lives with the condition and how you find it?

I’m plant based, regular exercise, don’t do much sugar. My worry is even more limitation i suppose. Probably something i just have to suck up if i want to reduce future flare ups. I’ve also had a remote session with a kinesiologist to look at supplements to go with medicine.

I realise it’s a very personal subject but even writing this helps me come to terms with it.

How are you getting on? Are you home yet?
I hope you are feeling better and can get on with your life soon after some recuperation. You sound a switched on guy and your diet is good so I am sure you will do well.

It's an eye opener that so many people that post on here are affected by a form of this condition.
I have a nephew who has had heavy duty Crohns since his early 20's so have some insight into how unpleasant the disease can be. He and his wife have already had Covid vaccinations so maybe you will get fired up the queue as well.

[Dalianwanda]

How are you getting on? Are you home yet?
I hope you are feeling better and can get on with your life soon after some recuperation. You sound a switched on guy and your diet is good so I am sure you will do well.

It's an eye opener that so many people that post on here are affected by a form of this condition.
I have a nephew who has had heavy duty Crohns since his early 20's so have some insight into how unpleasant the disease can be. He and his wife have already had Covid vaccinations so maybe you will get fired up the queue as well.

Thanks so much for checking in....This thread has been great for me as well as a few messages Ive had. Im totally bought into to living with this condition as well as totally open to curing the gut altogether (even though I know its a chronic condition)..

I got out on wednesday night..It was a bit of a head scramble as Id been 2 weeks in there, told the day before I was probably going to need another intense dose of remicade and take it from there..I then got told from the ward manager I was getting out within the hour. This was without speaking to the specialist dr, the pharmasist, the specilaist nurse...So I was a bit freaked as I had no info..They all eventually came to me in a short spell & I got enough info to know what was ahead..I was frazzled though as between being in a ward where it was mainly old folk with some sort of delerium to people passing away beside me & the condition having me at the loo so much I hadnt slept for 3 weeks. We were also moved ward 4 times because of covid scares in the hospital

Got home & the difference was night and day..Managed to get a couple of hours sleep straight away, he difference that has made is unreal. So Im feeling really good, far more 'in my boots' and no longer a bit of an emotional wreck :greengrin So at the moment Im just sleeping and eating with 2 100m walks each day. Gonna add in some meditation and breathwork today as well as a wee bit of yin yoga (ive never done it but I thought it would be good for my joints).

Were a bit further behind with covid vaccines here than back home...Gonna be a long time till I get mine I think. TBH Im more bothered about being on Immunosuppressants and picking anything else up.

So yeah thanks once again for checking in...Im so glad I put the thread up & very appreciative of the response :flag:

[blackpoolhibs]

Thanks for sharing, I really appreciate it. Thats great that your off the tablets & the incidents are down.

I lost 2 stone in the month & lying in a hospital bed for 2 weeks has meant all the muscle has gone from my legs and arse...But Im feeling stronger even just in the couple of days Im out and managing to walk 100m or so...I had the lovely experience of getting the camera up the jaxi without sedation!? That memory shall live with me for a while :greengrin

Thats interesting re it burning itself out...Im convinced if I do all the right things I dont have to have this for life.

Keep up walking, you will get the muscle back. Ask your doctor for as many blood tests as possible, especially if you start getting joint pain, it may not be anything to do with Chrohn/Colitis. I was told in the beginning it was a side effect, but after living with joint pain for years and not really moaning about it to the doctor, they found out about the fybromalgia.

I'm still moaning about it now, and not taking the medication for it while i can put up with the discomfort.

The doctor definitely said colitis can burn itself out, ask your own doctor if this is right. To be honest, with me being on azathioprine 10 years too long, blood test after blood test telling me i had nothing wrong with my joints, i'm not that happy with much of the information i've had from these specialists since getting the disease.:rolleyes:

[Alfiembra]

Thanks so much for taking the time to share..The fatigue thing really resonates with me. For about 8 years Ive been back and forth to the dr re my energy levels. Nothing showed up on any tests but even though I only had (in hindsight) my first flare up 2 years ago I really think this must be the reason. Will be interesting to see if things change with the medication as well as the gut healing work Ive started with a kinesiologist.

Yeah surgery was the option if the remicade didnt work. Although Im pretty grounded watching some of the auld men on my ward struggle with the stoma bag was starting to freak me out. Im so grateful the remicade is finally doing its thing, Ive heard great things about it. I'll be getting infusions every 8 weeks as far as I can tell. Again although the dr said its for life I'm going to do everything I can to make sure thats not the case & can eventually move off it.

Good to hear the infusions are starting to work for you. I had my regular one today I’m on a six week cycle and been on a double dose for over a year now. Have you been asked to provide stool samples at all? They check for faecal calprotectin levels which is bacteria levels. I have fairly high levels of it hence the double dose and more regular infusions. They are looking for numbers around the 200 mark as a target which indicates that things are under control. My numbers are regularly over 1000 which sounds bad but It doesn’t affect me in the sense that I don’t feel any less well regardless what the numbers say. Again hope you are feeling better soon.

[Dalianwanda]

Keep up walking, you will get the muscle back. Ask your doctor for as many blood tests as possible, especially if you start getting joint pain, it may not be anything to do with Chrohn/Colitis. I was told in the beginning it was a side effect, but after living with joint pain for years and not really moaning about it to the doctor, they found out about the fybromalgia.

I'm still moaning about it now, and not taking the medication for it while i can put up with the discomfort.

The doctor definitely said colitis can burn itself out, ask your own doctor if this is right. To be honest, with me being on azathioprine 10 years too long, blood test after blood test telling me i had nothing wrong with my joints, i'm not that happy with much of the information i've had from these specialists since getting the disease.:rolleyes:
Yeah the dr in charge at the hospital has said ive to get a blood test with each visit so that’s kinda reassuring.

It does seem like a lot of the info is either suck it and see how it goes or guesswork. So specialists here must be the same as backhome 😉

[Dalianwanda]

Good to hear the infusions are starting to work for you. I had my regular one today I’m on a six week cycle and been on a double dose for over a year now. Have you been asked to provide stool samples at all? They check for faecal calprotectin levels which is bacteria levels. I have fairly high levels of it hence the double dose and more regular infusions. They are looking for numbers around the 200 mark as a target which indicates that things are under control. My numbers are regularly over 1000 which sounds bad but It doesn’t affect me in the sense that I don’t feel any less well regardless what the numbers say. Again hope you are feeling better soon.

Do you have any after effects from the infusion? When i got it in hospital they gave me 4 hrs worth in the day..had to go for x-rays beforehand to check for chance of rupture. I was pretty sick when they did it so nit sure if after effects (they did have a dr sit with me almost all the way through it)

Tomorrow is the 1st one as part of my treatment over 2 months (this is prior to i think every 8 weeks). I’ll have to get more info on dose and stuff as i’ve no idea.

I gave a load of stool samples and as far as i know came back clear.

[Alfiembra]

Do you have any after effects from the infusion? When i got it in hospital they gave me 4 hrs worth in the day..had to go for x-rays beforehand to check for chance of rupture. I was pretty sick when they did it so nit sure if after effects (they did have a dr sit with me almost all the way through it)

Tomorrow is the 1st one as part of my treatment over 2 months (this is prior to i think every 8 weeks). I’ll have to get more info on dose and stuff as i’ve no idea.

I gave a load of stool samples and as far as i know came back clear.

No I don’t have any after effects although some people I know have said they feel very tired after it and need to go sleep for a while. I’m neither up nor down with it as it’s meant to also give your energy levels a boost too. The normal dose is 5mg per kg of your weight so if you’re say 80kg you would get a 400mg dose. The first 3 doses are infused over a 2 hour time frame, you get your first dose on day one 2nd 2 weeks later then 3rd one month later. Then you revert to your 8 week cycle. After 5 doses they speed up the infusion to 1 hour and after 10 to half an hour. They do keep a close eye on you for the first few infusions in case you have a reaction to it.
But as with all things there can be side effects, I have developed a tickly cough as I believe it can have an affect on you lungs, I find strong smells can set me off on a coughing spree particularly things like strong perfume or scent or weirdly enough when I’m filling the car with diesel the fumes set me off. However the benefits, for me at least, more than outweigh the deficits, I’ve been on the infusions for about 10 years now and haven’t had a serious flare up in all that time.

[Dalianwanda]

No I don’t have any after effects although some people I know have said they feel very tired after it and need to go sleep for a while. I’m neither up nor down with it as it’s meant to also give your energy levels a boost too. The normal dose is 5mg per kg of your weight so if you’re say 80kg you would get a 400mg dose. The first 3 doses are infused over a 2 hour time frame, you get your first dose on day one 2nd 2 weeks later then 3rd one month later. Then you revert to your 8 week cycle. After 5 doses they speed up the infusion to 1 hour and after 10 to half an hour. They do keep a close eye on you for the first few infusions in case you have a reaction to it.
But as with all things there can be side effects, I have developed a tickly cough as I believe it can have an affect on you lungs, I find strong smells can set me off on a coughing spree particularly things like strong perfume or scent or weirdly enough when I’m filling the car with diesel the fumes set me off. However the benefits, for me at least, more than outweigh the deficits, I’ve been on the infusions for about 10 years now and haven’t had a serious flare up in all that time.

Thats really helpful & reassuring, thank you......Delighted no flare ups for you too :thumbsup:

[I'm_cabbaged]

https://fb.me/e/ODI300OU This may be of interest to a few of you

[Dalianwanda]

https://fb.me/e/ODI300OU This may be of interest to a few of you

Thanks for this...Certainly Ireland is lagging way behind in agreeing a roll out plan. My Mrs has already been vaccinated (social worker in the hospice) but she was named as a close contact the other day..So that means the house had to be split & masks worn till she eventually got the all clear. Certainly gets you thinking about all of the bits of the house you touch!

[Alfiembra]

Professor Lees, mentioned in the link, has seen more of my intestines than I care to admit to :wink: A top bloke and also involved in many other research programmes
https://www.ed.ac.uk/usher/edinburgh-clinical-trials/our-studies/ukcrc-studies/predicct
https://crohnsandcolitis.ca/Research/Funded-research/The-gem-project

[I'm_cabbaged]

Professor Lees, mentioned in the link, has seen more of my intestines than I care to admit to :wink: A top bloke and also involved in many other research programmes
https://www.ed.ac.uk/usher/edinburgh-clinical-trials/our-studies/ukcrc-studies/predicct
https://crohnsandcolitis.ca/Research/Funded-research/The-gem-project

Prof Russell is also a top bloke and renowned world wide in IBD studies in paediatric IBD. Also a HIBS ST holder 😉

[Dalianwanda]

I just wanted to do a quick update as I found this thread so useful when I originally was diagnosed. At the time the specialist had said it was a severe case and that I would be on medicine indefinitely. As mentioned on Plant Medicine Thread I decided to go down that route after going through Gabor Mates 4 day online retreat as well as reading his books it seemed like something that could have a positive effect. I wanted to use it to let go of unconscious trauma that could be creating the physical response.

Anyway I did a number of sessions with two different plants and when I came back from Peru had a letter from the specialist asking to meet me (that in itself was a surprise as I hadnt heard from him in a while). We met & I told him although I was grateful for what the regular infusions had done I wasnt sure why I was making all the lifestyle changes if I was never going to know if they were making a difference due to the ongoing medication. He agreed that if I could show a negative biopsy then there would be no further need for medication but again stressed how sick I had been. The initial results showed all clear but I still needed biopsy results to confirm it. After 5 months waiting I finally got the all clear today! So I suppose yes Im grateful for what the specialist/medication had done for me but also pretty cool that a meditation Id been told Id be on for probably the rest of my days is no longer required due to working with plants from the amazon.

[blackpoolhibs]

I just wanted to do a quick update as I found this thread so useful when I originally was diagnosed. At the time the specialist had said it was a severe case and that I would be on medicine indefinitely. As mentioned on Plant Medicine Thread I decided to go down that route after going through Gabor Mates 4 day online retreat as well as reading his books it seemed like something that could have a positive effect. I wanted to use it to let go of unconscious trauma that could be creating the physical response.

Anyway I did a number of sessions with two different plants and when I came back from Peru had a letter from the specialist asking to meet me (that in itself was a surprise as I hadnt heard from him in a while). We met & I told him although I was grateful for what the regular infusions had done I wasnt sure why I was making all the lifestyle changes if I was never going to know if they were making a difference due to the ongoing medication. He agreed that if I could show a negative biopsy then there would be no further need for medication but again stressed how sick I had been. The initial results showed all clear but I still needed biopsy results to confirm it. After 5 months waiting I finally got the all clear today! So I suppose yes Im grateful for what the specialist/medication had done for me but also pretty cool that a meditation Id been told Id be on for probably the rest of my days is no longer required due to working with plants from the amazon.

That is great news matey. :top marks A small update on my case, i had the camera up 2 weeks ago, it was a routine check up they carry out every couple of years.

The doctor was very pleasant and spoke to me all through the 20 minute procedure. What he told me towards the end was quite good news too, he said if he did not have my notes in front of him, he would not believe i had Chrohns.

Now going by what i was told the last time i had this procedure, that i may have had collitis not chrohns, to now be told it looks like i have nothing does throw up a few more questions.

He also told me in the early 2000s, chrohns and collitis was misdiagnosed a lot. :confused:

Yet i was on azathioprine for 14 years, until one of my regular check ups picked up on it, and the doctor said i should have been on them for a maximum of 4 years.

What damage could this have done, has it contributed to my joint pain?

I'm pleased with the current news, and to be honest i dont have the fight in me now to make a big deal of it.

I certainly had all the symptoms of Chrohns, i lost 6 stone in the beginning, but it is worrying that something they say is incureable, can suddenly dissapear?

Something does not add up here? :confused:

[Dalianwanda]

That is great news matey. :top marks A small update on my case, i had the camera up 2 weeks ago, it was a routine check up they carry out every couple of years.

The doctor was very pleasant and spoke to me all through the 20 minute procedure. What he told me towards the end was quite good news too, he said if he did not have my notes in front of him, he would not believe i had Chrohns.

Now going by what i was told the last time i had this procedure, that i may have had collitis not chrohns, to now be told it looks like i have nothing does throw up a few more questions.

He also told me in the early 2000s, chrohns and collitis was misdiagnosed a lot. :confused:

Yet i was on azathioprine for 14 years, until one of my regular check ups picked up on it, and the doctor said i should have been on them for a maximum of 4 years.

What damage could this have done, has it contributed to my joint pain?

I'm pleased with the current news, and to be honest i dont have the fight in me now to make a big deal of it.

I certainly had all the symptoms of Chrohns, i lost 6 stone in the beginning, but it is worrying that something they say is incureable, can suddenly dissapear?

Something does not add up here? :confused:

It seems quite common re the difficulty’s in diagnosing. Glad to hear your all clear now and think your right in that making a big deal of it isn’t going to help you mentally or physically….enjoy your health 😁

[blackpoolhibs]

It seems quite common re the difficulty’s in diagnosing. Glad to hear your all clear now and think your right in that making a big deal of it isn’t going to help you mentally or physically….enjoy your health 😁
:aok: