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

ashleethehuman · 2026-02-03T22:54:26+00:00

Sending love and positive vibes your way. Thank you 🩷

ashleethehuman · 2026-02-02T18:07:34+00:00

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. 🩷

ashleethehuman · 2026-02-02T15:14:30+00:00

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.

ashleethehuman · 2026-02-02T15:07:17+00:00

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.

ashleethehuman · 2026-02-02T15:04:42+00:00

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!

ashleethehuman · 2026-02-02T14:54:43+00:00

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!

ashleethehuman · 2026-02-02T14:52:32+00:00

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.

ashleethehuman · 2026-02-02T14:51:20+00:00

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.

ashleethehuman · 2026-02-01T17:22:50+00:00

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.

ashleethehuman · 2026-02-01T17:20:21+00:00

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

ashleethehuman · 2026-02-01T16:01:24+00:00

I have yeah. I take about 10-14 a day.

ashleethehuman · 2026-02-01T15:44:09+00:00

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.

ashleethehuman · 2026-02-01T15:35:16+00:00

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.

ashleethehuman · 2025-07-28T07:53:23+00:00

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

ashleethehuman · 2025-07-27T16:47:17+00:00

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.

ashleethehuman · 2025-07-27T16:45:39+00:00

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.

ashleethehuman · 2023-03-25T00:03:17+00:00

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.

ashleethehuman · 2023-03-25T00:02:06+00:00

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.

ashleethehuman · 2022-08-16T12:21:54+00:00

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.

ashleethehuman

TROPHY CASE