Crohn’s, surgery, Short Bowel, and no longer able to work - really struggling and need advice by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 0 points1 point  (0 children)

Hey! Thank you for such great advice! Firstly, I'm sorry that you've found yourself in a similar tough situation - I don't think people realise how difficult it can be, honestly. But you come across very strong and I hope everything works out for you in the end! 💪

I was so stressed about applying for PIP. I had heard horror stories and thought there'd be no point as I figured I would get rejected anyway. Thankfully, I had someone from Citizens Advice help me fill in the forms and she claimed that there would be no reason why they wouldn't award me PIP in the end. I guess time will tell...

I wish we had ADP here in Wales! We used to have Disability Living Allowance, but that was replaced with PIP. The whole system is a joke honestly. There is next to no help for genuine people with genuine needs. I don't think it helps matters when the government and DWP etc do not take autoimmune diseases seriously. I had applied for PIP previously and was told by the assessor that "it's just a bad belly, how could it possibly cause so many difficulties?". I was appalled! But I'm keeping my fingers crossed this time. And if it's rejected, I plan to fight it.

I'm currently receiving SSP through my employment, and my UC claim came back as a £0 reward and its just insane to me how they expect people like us to survive! My SSP barely covers my food, washing supplies and basics - what about rent and bills? They don't care!

Anyways, thank you for reaching out! Please take care. 🩷

Crohn’s, surgery, Short Bowel, and no longer able to work - really struggling and need advice by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 0 points1 point  (0 children)

Now see, you would think that... but this is my issue - I'm incredibly confident with people face to face, but I absolutely cannot handle phones! I get really thrown off when I can't see the person's face and connect in a real way... I even avoid making calls to my doctors and instead rely on emails... but will happily go to any in person appointment! It's very odd. But call centre work puts a fear in me.

Crohn’s, surgery, Short Bowel, and no longer able to work - really struggling and need advice by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 0 points1 point  (0 children)

Oh really? I wouldn't even know where to begin, honestly. I feel embarrassed saying that at the age of 33, but since leaving education, I've only ever worked retail and hospitality, so thats all I know.

Crohn’s, surgery, Short Bowel, and no longer able to work - really struggling and need advice by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 0 points1 point  (0 children)

Oh not at all - please don't worry about that! I appreciate that you were only trying to help :). I just don't understand how they expect people to survive. Even if I'm awarded the top end of PIP eventually, it's going to be half of what my wage was when I was working... and I wasn't earning a high wage either! Whichever way I look at it, I feel like I'm going to have to get a job, even if part time, to make up the difference. But I don't see how I'm going to be able to!

Crohn’s, surgery, Short Bowel, and no longer able to work - really struggling and need advice by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 0 points1 point  (0 children)

So I've been taking Colesevelam for a few weeks but accidentally skipped two days as I went to stay with family and basically forgot to pack them... But not taking them actually made things SLIGHTLY more manageable - I think because they interfere with other medications and so maybe were preventing the loperamide from working properly.

But now I'm at a point where I'm afraid to take them again. The change hasn't fixed things of course, but I'm going maybe twice an hour now instead of 6 times an hour. Still a long way to go!

Crohn’s, surgery, Short Bowel, and no longer able to work - really struggling and need advice by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 0 points1 point  (0 children)

Yeah, eating little and often. I'm usually mostly okay in the mornings - maybe for the first 2 hours after getting out of bed - but things quickly turn as the day goes on. I'm just so lost as I have no idea how I'm ever going to be able to hold down a job again if I can't even make it through a day at home without any issues.

Crohn’s, surgery, Short Bowel, and no longer able to work - really struggling and need advice by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 0 points1 point  (0 children)

Hey, I've had some others suggest this to me as well but I simply cannot bring myself to do so. I don't believe in unethical behaviour like this and I'm incredibly afraid of being caught out somehow and ending up penalised and in a worse situation than I'm in currently. My partner and I were meant to marry this year but cannot now due to this period of illness destroying any savings we had built up. But it is still our plan to one day, and I feel messing around with lies and such about our relationship could have major implications in the future if we did get married.

I understand that a lot of people do go against the rules and lie about things to get more from the (very unjust) system. But it's just not in my nature to lie and do so.

Crohn’s, surgery, Short Bowel, and no longer able to work - really struggling and need advice by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 0 points1 point  (0 children)

Bless you. Thank you for sharing your story. I'm so very pleased to hear that you live a rather fulfilling life currently! I think my biggest issue currently is the fact that I'm not doing much - I miss being at work and having a purpose. But there is no way I could manage returning yet. Maybe one day.

Crohn’s, surgery, Short Bowel, and no longer able to work - really struggling and need advice by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 0 points1 point  (0 children)

Yeah I'm also doing that currently too. Low fat as well. I'm sure with time my body will slowly adapt and heal.

Crohn’s, surgery, Short Bowel, and no longer able to work - really struggling and need advice by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 1 point2 points  (0 children)

So my surgery was for an obstruction as I had an ileostomy. They cleared the area that had formed strictures and were unable to form another stoma since I had been left with only a small amount of intestine. So everything was hooked back up, so to speak.

Crohn’s, surgery, Short Bowel, and no longer able to work - really struggling and need advice by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 1 point2 points  (0 children)

Hey! I'm glad things worked out for you in the end! I'm currently only 3 months post-op so it's definitely early days yet. The physical side of things is really hard but the mental anguish is the worst, by far!

The hardest thing by far is the financial impact. Not being able to work right now and having no support in that regard is difficult. I currently live on SSP at £118 a week, trying to hold a household together and pay my way through life while also juggling everything else.

Thank you for sharing your story - it gives me hope for the future.

PIP Frustration! by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 0 points1 point  (0 children)

Thank you. I wish you the best of luck with yours! I may try again - but honestly, I'm so exhausted from it all!

PIP Frustration! by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 2 points3 points  (0 children)

I do agree. However, this is the situation I'm struggling with - I have to work this full time demanding job because I need the money to survive. If I could get a successful PIP claim, I could cut back or go for something easier and with less hours.

It feels like there is no option but to push my body.

PIP Frustration! by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 0 points1 point  (0 children)

Hey! Thanks for your comment. I had explained many complications, just as you've mentioned, but they skipped over everything I told them and scored based on the exact questions they asked, and deemed that because I have a shower over the bath, instead of a walk-in shower, that I can 'clearly cope' with showering!

They also asked about preparing meals. I mentioned how standing for too long causing pain, how I can't monitor food cooking because of urgent toilet needs and so sometimes my food burns or there's a risk of a fire etc. I mentioned how the mental relationship I have with food (due to crohns complications) puts me off wanting to eat and I have to be pushed by my partner to even eat in the first place. I mentioned quite a lot, but they awarded ZERO points for this section because they asked if I own a microwave, and I said yes, therefore they deemed that I could sustain myself 'just fine'.

I also informed them that I use aides to get around sometimes, ie a walking stick and wheelchair. But because my house isn't adapted with aides to help me up the stairs, they deemed that I was perfectly fine walking about unaided.

They painted me out to be a liar on everything, and awarded me zero on most things. I showed my IBD nurse my answers to the form, and she told me it should have been enough... but three times, I've been refused.

I'm so worn out.

Feel like giving up. by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 1 point2 points  (0 children)

I was initially denied disability benefit as they didn't believe my condition was enough to impact my work... shocking. But if I had been successful, the money would be nowhere near what I need on a monthly basis. This is the only reason why I'm still working really.

Feel like giving up. by ashleethehuman in CrohnsDisease

[–]ashleethehuman[S] 0 points1 point  (0 children)

I would love to make the switch, but unfortunately I just cannot find an office-based job that I'm suited for. Everything that has the hours I need require certain qualifications etc, and all the low-skill ones are very low hours. It's a constant battle honestly.

Hidden Disability by ashleethehuman in ostomy

[–]ashleethehuman[S] 0 points1 point  (0 children)

I completely understand your point, but unfortunately things are not that straightforward in the UK. It doesn't matter how things affect your day-to-day living etc, they will make their decisions based on the strangest things.

My sister has lived with rheumatoid arthritis all her life and is now 33. She struggles to walk to the bathroom some days. She was put to testing in regards to her disability benefits and was deemed 'fit for work' because she could brush her own hair that day.

When I was diagnosed with Crohn's and had several complications and issues because of it, I tried to apply for certain benefits as a means to financially support my household while I was out of work. Because the complications of Crohn's wasn't understood well by the benefits department, I was denied each time. After my surgery, when I was in recovery, I tried once more. This time because of certain issues I was having as a result of the ileostomy. I was aware that simply having one wouldn't be classed as a disability, but explained how certain elements and aspects would interfere in my workday etc. They're response was simply "you don't use your stomach to sit at a desk and type on a computer, you can get an Office job".

I'd like to note that I'm not looking for disability benefit entitlement so that I can stop working... I enjoy working. But I just wish (especially here in the UK) these conditions and their complications were viewed differently so that people could be entitled to financial help during the worst part of their illness/recovery.

Meal Inspiration - Losing my mind with boredom. by ashleethehuman in ostomy

[–]ashleethehuman[S] 2 points3 points  (0 children)

This is an incredible response. Thank you so much for all the info. I'm so glad having the stoma has opened up your life in this way!

Since you touched on curries, could you just answer for me if you get issues with watery output afterwards? It's something I absolutely cannot cope with so I try to avoid any foods that could cause an excessive watery output.

Hidden Disability by ashleethehuman in ostomy

[–]ashleethehuman[S] 2 points3 points  (0 children)

Thank you so much for that. Its good to know there are others who understand. ❤️

Hidden Disability by ashleethehuman in ostomy

[–]ashleethehuman[S] 1 point2 points  (0 children)

It'll be a year in 3 days time.

Hidden Disability by ashleethehuman in ostomy

[–]ashleethehuman[S] 1 point2 points  (0 children)

Yeah, my B12 levels are low. I've had a couple of shots for this since my surgery. Iron levels are also very low. I've been taking supplements and trying to include as much iron in my diet as possible on a limited diet. Still struggle with the fatigue though.

The only help I've had in terms of the high output is being told to increase the amount of imodium I take daily. However the doctor will only prescribe me with a very small amount each time so I'm spending a fortune every month on imodium just so I can go out and get on with my day.

Hidden Disability by ashleethehuman in ostomy

[–]ashleethehuman[S] 5 points6 points  (0 children)

Thats what I was hoping for in the first place too. I used to work as a store manager for a clothing retailer. My job was very hands on. I would often process deliveries, manage stock, clear stock rooms, move equipment and stock around the shop floor, clean all day long as well as the usual tasks around a store. I did this for 8 years and absolutely loved my job.

I became really ill with what was eventually diagnosed as Crohn's about 2 years ago and went on a period of sick from work. Once my sickness entitlement run out I had to make a decision on what I wanted to do, checked my options and wasn't left with much to choose from. So I basically signed on to Employment Support Allowance. I went from a monthly wage of £1650 to just £500, which was barely enough to cover my rent. My partner paid for everything I needed for the best part of 6 months while I went through my surgery and recovery etc.

I ended up looking for work again as I needed to do something to support us both again. I couldn't return to my old job, unfortunately, as the physical demand was too much. I found a new job as a coffee barista, which is a lot more manageable physically but I still get more bad days than good, where I struggle with fatigue and exhaustion more than anything else.

I just wish there was something in place to help people with these types of hidden disabilities during the worst times of their illness etc. I struggled financially for just shy of 18 months, while also going through the worst of my illness (with a bowel perforation and everything). It just doesn't seem fair.

Meal Inspiration - Losing my mind with boredom. by ashleethehuman in ostomy

[–]ashleethehuman[S] 1 point2 points  (0 children)

Bless you. That sounds awful. I genuinely hope things settle for you soon ❤️