Need some help

[Benzh]

I'm 22, had IBD since I was 12, specially Crohns Disease. I have just finished college which was a struggle but fortunately I had a great teacher who understood my problem and allowed me a lot of leeway. So now that's all finished I should be out looking for a job but in my current condition, that's impossible.

Have a meeting with my specialist next week and I'm going to convince him surgery is the right choice, it's what I want 100%.
Living with constant cramping, gas, watching what I eat, daily tablets, constantly visiting the toilet. I hate it. I don't know how I'm going to be in the next few minutes, no idea how I'm supposed to work.

Ileostomy is what Ill most likely have but won't know for sure until I speak with a surgeon. As long as my specialist get's on board with the idea instead of just giving me another tablet, I should be alright.

Is there anything I can claim during the whole procedure? So the initial test and then the recovery period/getting to grips living with a stoma/bag? Think in total that would be roughly 4 months? To be completely healed and ready to go.

Bare in mind I live in the UK. I know every country is a little different when it comes to these sorts of things.

I don't need to explain to you lot about the nightmare we go through daily.
Being 22 and having my parents still paying for me, I hate it but sadly that's the situation I'm in.

Heard some amazing stories from people who have a stoma, how it changed their lives for the better.
I can't wait to get mine and hopefully regain my life

TLDR: Is there anything I can claim in the UK while going through the process of getting a stoma?


Thanks, Ben

 

[ronroush7]

I have not had a stoma but underneath the surgery section in here there is a subsection on stomas that you could post in also

 

[Benzh]

I have not had a stoma but underneath the surgery section in here there is a subsection on stomas that you could post in also

I'm not asking about the stoma, it's more about because I will be unable to work for 2-4 months, is there anything I can claim during that period.

 

[ronroush7]

I'm not asking about the stoma, it's more about because I will be unable to work for 2-4 months, is there anything I can claim during that period.

You said you were in the UK. Mandy lives there. Tagging Mandy

 

[Benzh]

You said you were in the UK. Mandy lives there. Tagging Mandy

OK thanks, look forward to hearing from Mandy :ysmile:

 

[Bunty]

Why not give the DWP..department of work and pensions..a call, they're the ones who will be able to tell you what benefits you may be able to claim.
Or look at gov.uk and look for that department, there's sure to be a phone number. Or even go to your local benefits office and have them explain things to you.
Hope you can sort something out.
Bunty x

 

[eleanor_rigby]

Hello,

Just wondering what medication you have tried so far? Also what makes you think you will need an ileostomy if you do end up needing surgery?

 

[Benzh]

Hello,

Just wondering what medication you have tried so far? Also what makes you think you will need an ileostomy if you do end up needing surgery?

I was fortunate enough to speak with a stoma nurse, can't remember her exact position but she is in charge of that sort of thing in the region. We spoke for several hours, explained everything, she look through all the paperwork I have and just gave her opinion on what she thinks would happen. Won't know for sure until I speak to a surgeon

Can't remember half the medications I have tried, most has long names and didn't work. Currently I'm just on 8 pentasa tablets along with prednisone. No interested in taking any more because how long do you wait before you give in?

I have no problem with getting a Ileostomy, Colostomy or J-pouch or any other sort of surgery.

 

[shamrock15]

Have you had surgery before? I am asking because the conversation so far would suggest that is not the case. Going straight to an ostomy seems a little extreme, and if that really is an option here I would think you would already be on the table. I had 4 surgeries done with several feet of bowel and 20+ strictureplasties done before I got my temporary ostomy.

If you do need a bag, they aren't the end of the world. After the initial couple weeks getting used to it I actually found it quite convenient for the most part. A couple minor incidents. Still, I was glad to be rid of it. I like playing hockey and an ostomy doesn't fit too well into that picture.

Going into surgery, ask about your regimen afterwards. If you are prone to strictures and have been active a long time you may be a good candidate for a biologic to either get you to or keep you in remission. Surgery never got me there.

In any case, best of luck with your consult. I can't say that I ever had any qualms about going under the knife. Early surgeries for me were about a 6 week recover, but the later ones took more time because my health had deteriorated somewhat by that point.

 

[Benzh]

Have you had surgery before? I am asking because the conversation so far would suggest that is not the case. Going straight to an ostomy seems a little extreme, and if that really is an option here I would think you would already be on the table. I had 4 surgeries done with several feet of bowel and 20+ strictureplasties done before I got my temporary ostomy.

If you do need a bag, they aren't the end of the world. After the initial couple weeks getting used to it I actually found it quite convenient for the most part. A couple minor incidents. Still, I was glad to be rid of it. I like playing hockey and an ostomy doesn't fit too well into that picture.

Going into surgery, ask about your regimen afterwards. If you are prone to strictures and have been active a long time you may be a good candidate for a biologic to either get you to or keep you in remission. Surgery never got me there.

In any case, best of luck with your consult. I can't say that I ever had any qualms about going under the knife. Early surgeries for me were about a 6 week recover, but the later ones took more time because my health had deteriorated somewhat by that point.

Hey Shamrock, no I have not had surgery before. I confused why an ostomy seems extreme? I have had IBD for going on 10 years, have plenty of medication, been in and out of hospital.

I'm currently not too bad but "not too bad" is still going to the toilet a lot, cramps, gas, constantly tired etc.. I have no quality of life.

I want to op for surgery because I don't want to wait till a flare up, I don't want to wait till I'm rushed back into hospital. Hopefully that makes sense?

I have not had a camera or anything in almost 2 years so that will be the next step but regardless of the results, I still would like a bag (might sound odd)

I'm very open minded and laid back, won't have any problems with a bag. From what I have been reading, I'm quite excited to hopefully get my life back and start living a little

 

[Clash]

Have you been on any of the biologics, like remicade or humira? Or even the immune suppressants like 6mp, imuran or methotrexate?

Most of the time you have to go through the prescription treatment options before the docs will move to surgery or at least tried the biologics. It isn't always the case, my son after being on remicade then remicade plus methotrexate had to have surgery. Unfortunately, even with meds the CD was active again within months and we are now trying out yet another new med.

Good luck and hope you get answers soon!

 

[Benzh]

Have you been on any of the biologics, like remicade or humira? Or even the immune suppressants like 6mp, imuran or methotrexate?

Most of the time you have to go through the prescription treatment options before the docs will move to surgery or at least tried the biologics. It isn't always the case, my son after being on remicade then remicade plus methotrexate had to have surgery. Unfortunately, even with meds the CD was active again within months and we are now trying out yet another new med.

Good luck and hope you get answers soon!

No, not that I know of. The problem is, how long do I wait? I mean I need to be working, money doesn't grow on trees. It wouldn't be such a problem if I was younger.

Do I spend the next few years trying even more drugs hoping that one might work and if doesn't, that's more time wasted.

 

[DougUte]

You said you were in the UK. Mandy lives there. Tagging Mandy

Got to use her screen name. Tagging Fuzzy Butterfly.

 

[ronroush7]

I will blame it on brain fog.

 

[DougUte]

No, not that I know of. The problem is, how long do I wait? I mean I need to be working, money doesn't grow on trees. It wouldn't be such a problem if I was younger.

Do I spend the next few years trying even more drugs hoping that one might work and if doesn't, that's more time wasted.

I had to look at your public profile and see which IBD you had. I see that you have Ulcerative Colitis. So you disease is entirely in the colon. I have Crohn's Disease. In Crohn's there usually is involvement with the small intestine. I had a doctor explain to me once that you can live without your colon, but not without the small intestine. The small intestine is where the absorption of nutrients occurs.

I understand why somebody with U.C. would be tempted. Removal of the colon is a "cure" for the disease. This would mean going with a J Pouch or a stoma. I have a good friend with U.C. and she has found a long remission using Remicade. She use to be a member of this forum but has moved on from it, or I would tag her for you.

I know from her experience that she would suggest going the route with the biologics before doing surgery. The surgery is extreme and should be a last resort.

 

[eleanor_rigby]

I live in the UK and in my experience surgery is an absolute last resort. I got a bowel perforation and abscess in Oct 2011, which they did not operate on until Dec 2011. It took 4 hospital inpatient visits. They would not operate until they did a colonoscopy and actually saw the perforation (when they did a CT scan they just saw a mass and the abscess and tried to treat with antibiotics). I was in agony for 2 months with a fever, fatigue and horrific pain. They were so slow to do anything and that was basically a life and death situation?! In my experience the doctors will want to try other drugs with you before operating. That means immune suppressants such as azathioprine, 6mp or methotrexate.

If you have tried all of them then they would want to try biologics such as remicade or humira which are injections/infusions done at the hospital. If you have not tried all these medications then I would think it would be near impossible to get surgery in the UK? That's just how the system is set up. They generally won't operate unless your life depends on it.

 

[Benzh]

I live in the UK and in my experience surgery is an absolute last resort. I got a bowel perforation and abscess in Oct 2011, which they did not operate on until Dec 2011. It took 4 hospital inpatient visits. They would not operate until they did a colonoscopy and actually saw the perforation (when they did a CT scan they just saw a mass and the abscess and tried to treat with antibiotics). I was in agony for 2 months with a fever, fatigue and horrific pain. They were so slow to do anything and that was basically a life and death situation?! In my experience the doctors will want to try other drugs with you before operating. That means immune suppressants such as azathioprine, 6mp or methotrexate.

If you have tried all of them then they would want to try biologics such as remicade or humira which are injections/infusions done at the hospital. If you have not tried all these medications then I would think it would be near impossible to get surgery in the UK? That's just how the system is set up. They generally won't operate unless your life depends on it.

I mean, what am I supposed to do? Spend the next few years trying different medication hoping something will work.. Right now I don't work, I can't. I'm constantly tired from waking up all night, constantly on the toilet throughout the day, cramps, gas etc... Then there's a chance that nothing will work.

Rent, food, utilities, clothes etc.. If I have no money coming in what do I do?

Very sad to hear

I will find out for sure tomorrow

 

[Clash]

Ahhh I didn't even think to look at your type of IBD. You state in the first post that you have CD but Doug mentions in the post above that your profile says UC. UC is different, in that, removing the colon gets rid of the disease. The docs still may suggest stronger meds first but just go in and be honest with how you are feeling and how it is affecting your life.

If it's CD your dealing with that surgery is not necessarily the magic pill. You can have surgeryour but meds will still be required for maintenance and there's no guarantee when the disease will flare again. I think the chances of active disease returning are like 50% at the surgical site within a year, but that may be off. Good thing though is if you haven't tried the biologics they are great for a lot of people. Many find improvement quickly and maintain remission for quite some time.

Good luck!

 

[Benzh]

Ahhh I didn't even think to look at your type of IBD. You state in the first post that you have CD but Doug mentions in the post above that your profile says UC. UC is different, in that, removing the colon gets rid of the disease. The docs still may suggest stronger meds first but just go in and be honest with how you are feeling and how it is affecting your life.

If it's CD your dealing with that surgery is not necessarily the magic pill. You can have surgeryour but meds will still be required for maintenance and there's no guarantee when the disease will flare again. I think the chances of active disease returning are like 50% at the surgical site within a year, but that may be off. Good thing though is if you haven't tried the biologics they are great for a lot of people. Many find improvement quickly and maintain remission for quite some time.

Good luck!

I have UC. Only just noticed myself I put Crohns Disease, must have been thinking about it when making the post my apologises.

That's why Id prefer to have surgery, as it essentially "cures" it. Might have to go to the toilet in a bag but I'm all for that if it means I can have a life

All I can do is meet the specialist, make my case and see what he thinks.

Never got an answer on what I actually wanted but nevertheless , a lot of great/helpful comments.
Much appreciated

 

[ronroush7]

I have UC. Only just noticed myself I put Crohns Disease, must have been thinking about it when making the post my apologises.

That's why Id prefer to have surgery, as it essentially "cures" it. Might have to go to the toilet in a bag but I'm all for that if it means I can have a life

All I can do is meet the specialist, make my case and see what he thinks.

Never got an answer on what I actually wanted but nevertheless , a lot of great/helpful comments.
Much appreciated

I had a bowel resection six years ago. One of my doctor's associates said that the Crohns Disease will eventually return.

 

[shamrock15]

UC can be cured by removal, so you may be onto something with the ostomy. It will all depend upon the extent of your inflammation. If there is no scarring and only inflammation the biologics could do you well. Removal of your colon could cause some water absorption issues - the fine folks in the UC and ostomy sections could fill you in on those.

 

[Benzh]

Had a chat with him, seems to think it's a bad idea. I'm rushing into it, 10 years isn't long enough but if it's something I really want, he will get it done. For now he has given me 2 months worth Prednisone and booked me for a Colonoscopy so we can see what's happening. Then going to put me on an immune suppressant.

I don't know what I'm supposed to do about money.

 

[Bunty]

Sounds like a sensible approach.
The only way you'll find out what, if anything, you're entitled to is to get in touch with the relevant department. If you're not up to it then maybe ask your mum or dad to do it for you.
Bunty x

 

[DustyKat]

Just to clarify, you have a job? I’m just not sure as you say your parent’s are still paying for you.

I know there are many similarities between our, UK and Aus, health and welfare systems. In Australia, if you are 22 years or older and have a job, or study, and require a temporary period of time off work because of injury or illness and don’t have sick leave to cover it you can claim Sickness Allowance from the government.

Here, for social security purposes, when you are 22 years or older you are deemed independent when you live with your parents and so eligible for payments you wouldn’t otherwise have access to when you are under 22 and living at home.

Perhaps you have something similar there?

 

[eleanor_rigby]

1. Statutory sick pay (if you are too sick to work but have a job): https://www.gov.uk/statutory-sick-pay/overview

2. Disability living allowance if you qualify: https://www.gov.uk/dla-disability-living-allowance-benefit

3. Jobseekers allowance if you are unemployed: https://www.gov.uk/jobseekers-allowance

4. Employment-support-allowance - paid to people who are unable to work due to illness or disability https://www.gov.uk/employment-support-allowance

5. Personal independence payment - helps with some of the extra costs caused by long-term ill-health or a disability if you’re aged 16 to 64: https://www.gov.uk/pip

 

[Benzh]

Just to clarify, you have a job? I’m just not sure as you say your parent’s are still paying for you.

I know there are many similarities between our, UK and Aus, health and welfare systems. In Australia, if you 22 years or older and have a job, or study, and require a temporary period of time off work because of injury or illness and don’t have sick leave to cover it you can claim Sickness Allowance from the government.

Here, for social security purposes, when you are 22 years or older you are deemed independent when you live with your parents and so eligible for payments you wouldn’t otherwise have access to when you are under 22 and living at home.

No, I don't work. No one wants to pay someone to essentially stay at home.
I spoke with someone about ESA today who is sending out the relevant information but I know it's going to be a waste of time.

Have heard horror stories about people trying to claim it with IBD. If you can stand and raise your arms above your head, you must be alright and therefore can't claim anything.

I understand the what the doctor is saying but you can't live on fresh air.

 

[eleanor_rigby]

No, I don't work. No one wants to pay someone to essentially stay at home.
I spoke with someone about ESA today who is sending out the relevant information but I know it's going to be a waste of time.

Have heard horror stories about people trying to claim it with IBD. If you can stand and raise your arms above your head, you must be alright and therefore can't claim anything.

I understand the what the doctor is saying but you can't live on fresh air.

It seems like you have it set in your mind that you want a colostomy and that's it. Therefore you feel alternative routes (medication, financial support) are going to be of no benefit for you, before even trying them out?

 

[Benzh]

It seems like you have it set in your mind that you want a colostomy and that's it. Therefore you feel alternative routes (medication, financial support) are going to be of no benefit for you, before even trying them out?

I'm not saying they won't be beneficial, plenty of people have had success with medication(s), the problem is I have no money coming in. Financial support isn't going to cover things like rent, food, medication costs, clothes, utilities etc.. Some of the meds could work for me, would be great but then again, they might not. Then that's even more time wasted away.

Perhaps I just need to stop thinking about it for a few hours and just clear my head.

Sorry if I sound angry, I'm just stressed out and worried.
I no have quality of life and it fucking sucks.

 

[DustyKat]

I don’t have IBD, my kids do, and they are about your age, 23 & 24. I have seen how it has affected them at varying times over the years and how much it sucks to see other kids their age living a carefree and spur moment life which just doesn’t happen for them. They have lifelong restrictions.

Given your age and diagnosis I imagine it will be difficult to access benefits there, just as it is here. Can you speak with the doctors about it as you would normally need their supporting evidence when applying for any disability type allowance. I would fill out any relevant forms just on the off chance that something did come of it

My only concern with surgery at your age is that the UC diagnosis is hard and fast. The reason I say that is, whilst not common it also isn’t rare for someone to have their large bowel resected only to be reclassified as Crohn’s when disease crops up down the track post surgery.

 

[Benzh]

I don’t have IBD, my kids do, and they are about your age, 23 & 24. I have seen how it has affected them at varying times over the years and how much it sucks to see other kids their age living a carefree and spur moment life which just doesn’t happen for them. They have lifelong restrictions.

Given your age and diagnosis I imagine it will be difficult to access benefits there, just as it is here. Can you speak with the doctors about it as you would normally need their supporting evidence when applying for any disability type allowance. I would fill out any relevant forms just on the off chance that something did come of it

My only concern with surgery at your age is that the UC diagnosis is hard and fast. The reason I say that is, whilst not common it also isn’t rare for someone to have their large bowel resected only to be reclassified as Crohn’s when disease crops up down the track post surgery.

Has booked me in for a camera so hopefully they will be able to tell me what's happening.

Yeah, ill be able to get hold of a fit note I think it's called that will back up what I'm saying from my doctor, hopefully that might help out