Devastated - end of the road with Crohn's disease

[distraughtandhopelessibd]

Not sure what I'm trying to achieve by posting but feeling trapped in a black hole.

I have uncontrolled Crohn's disease. We've gone through all the first line treatments, removed part of my bowel (which was traumatic and took me a very long time to recover from), failed multiple biologics and had cancer scares.

I have just been told that it's not cancer this time either but that the medication has failed again and we have run out of road. There's one drug left to try but they don't think it will work. Told me that leaves me with the "option" to have my bowel removed and have a stoma.

Except that won't help with the joint pain caused by Crohn's or the fatigue or the constant embarrassment and worrying about bathroom access and it won't remove the cancer risk because I have connected risk factors and it won't improve my quality of life or remedy the PTSD I have from a decade of traumatic, failed hospital treatments and admissions. It won't fix anything at all it will just give me an even worse set of problems for the rest of my life. I am absolutely not having my bowel removed just because the NHS won't fund any other drugs or try dual therapies.

I have had this hopeless devastating news dropped on me on my own this week and there is no support whatsoever to help me cope with it. Of course I am glad it is not cancer but at the same time I cannot help but notice that if it had been cancer I would have had dedicated expert helplines, specialist nurse support, people who understood, support threads I could join, a process to follow at work to support me - and most of all we would have had definite and superior treatment options to what I've just been presented with.

Instead I have nobody I can call who will understand, no support lines for this circumstance, no professional support, no support from my employer because they just think it's great news that it's not cancer and I should be happy and fine and carrying on as normal. If it had been cancer we could have fixed it and I would have had space and grace to deal with it and to feel devastated and frightened. We can't fix this and I'm still left with the threat of cancer hanging over me. And no space or grace to cope with my emotions. I do feel devastated and frightened.

I feel like all my hopes and dreams are shattered in tiny pieces on the ground that can never be put back together and I have nowhere to turn and nobody who understands. Somehow I'm supposed to piece myself back together and turn up for work on Monday as if everything is fine. I feel like my life is over and my future is gone.

They didn't tell me this drug was our last chance, I thought there would be more options if this failed. I was not prepared for the news they gave me at all and I am not coping today. I feel so desperately alone and abandoned.

If you got this far, I know nobody can fix this, but thank you for reading.

OP, I’m sorry you’re struggling so much, I can hear the panic coming through in your post. Crohn’s is a very tough condition to deal with. But I would echo what other posters have said here - having a stoma can be absolutely life-changing, in a positive way, for people with IBD. I’m a GP and I see this over and over again in my patients. It is very rare for quality of life NOT to improve significantly after the surgery.

Is there a stoma nurse attached to your team that you could speak with? They may be able to allay some of your fears over the practical aspects of managing it.

That's interesting and wonderful you've had 20 years free from flares (although sorry you had to go through a hysterectomy).

My Crohn's does get worse on a predictable cyclical basis so whilst I don't think I have endo I also don't think hormones are helping.

My Mum has Chrohns and has been battling it for over 50 years. When she was first diagnosed they told her she wouldn’t make old bones….
She has started a new treatment, self injections. It’s an autoimmune treatment fairly recently offered.
This was also a last ditch attempt at controlling it, she had tried it before but stopped very quickly due to the side effects.
I asked her to try it again as the doses have been altered etc and so far we are on injection number 3, the side effects have lessoned, her inflammatory markers have dropped and magnesium levels have risen.
I just want to send you a massive hug, it’s a awful disease

I dont want to put you off a stoma, DSs has kept him alive. But even with it his Crohn's has life altering impacts of fatigue, pain and eye issues. Im sure you know its a condition which effects people from mouth to anus, so a stoma can only help with some symptoms. You'll probably still need biologics or other medication life long anyway. Push for a review elsewhere.

Google seems to be suggesting that I would have to ask my GP to refer me to a more specialist hospital for a second opinion. I will try and work out if that's correct and then see if I can come up with a form of words they find persuasive.

Does anybody know - would another hospital need me to obtain all the relevant records for them or would they be able to access them?

Thank you and I'm sorry he's still suffering. You've just nailed one of the reasons I'm unhappy about this being presented to me as if it's going to fix everything and mean it won't matter that they're saying there's no more drugs available to me.

It was about 20 years ago so possibly employers were more generous re absence etc, investment bank so long stressful hours, Canary Wharf which was the back of beyond then to get to

He was also a long standing member of staff so people knew he was hard working.

So 6 months paid sick leave. Once back to work focus on reducing stress and tiredness so his work hours were kept to a strict work day, but if he was struggling could go home immediately no issue.

Senior staff knew so could juggle workload.

Given a laptop so could work from home. Unusual back then.

Taxis to and from work as he couldnt easily manage public transport to start with.

Changed roles after a while.

I left after a couple of years and lost contact so I dont know for how much longer the support continued.

Thank you so much. I'm really glad that your mum's treatment is looking encouraging, I hope it continues that way.

Thank you, that's really helpful, I appreciate you taking the time.

@distraughtandhopelessibd I hear you 💐 I’m early 40s & have also come to the end of the road treatment wise with my Crohn’s. And it’s f**king shit, awful, absolutely soul destroying. I’ve had nearly all my bowel removed (and I really do mean nearly all, so no more surgery) & had a stoma for over 25 years. Currently on Skyrizi & everyone is keeping fingers crossed that it works (Although at the moment I’ve got that niggling feeling that something is wrong). There is no psychological support, although I did receive 12 fantastic sessions with a PTSD specialist through the self refer scheme offered by the GP, so could be worth a shot. The place you need is St Marks in London. I’m not actively treated there, but they have some amazing patient events through the Crohn’s & Colitis UK charity - gives you the chance to meet some of the staff without a referral & see what’s happening clinical trial wise. But, you’re not alone, there are a few of out here who get it 💐 Just to add - joints are well known for being a painful part of Crohn’s disease, & if you’ve not seen a rheumatologist I’d see if this is available to you (Sorry if you’ve already said & I missed it).

I have Rheumatoid which is thankfully currently well controlled but this has not always been the case. As far as I am aware it is your right to choose which hospital or consultant you want to treat you. I tried two hospitals where I lived both terrible. Went from not too bad on a private prescription to absolutely uncontrolled in the nhs very quickly with no follow up as they had a years wait for the next appointment and no one on the nurses helpline. Thankfully I moved and my next consultation was brilliant and I have remained with that team ever since despite moving far away. It is my right to have them treat me the gp has a shared care agreement with them and I have no intention of ever leaving. Push for a change research the best plus what rights you have to ask for a referral and take that to your gp. It is unbelievably hard to fight your corner when you feel so shit but it has to be done. Good luck.

I know nothing about this so forgive me if this is useless. We are just back from a holiday in Florida and there was an advert constantly on the radio for a drug called Tremfya, for Crohns and colitis. I ended up making a note of it in my phone because my friend’s Sister has Crohn’s disease and I didn’t know if it was a new drug and it might be helpful.

Its sounds horrendous I’m really sorry x

Thank you. I had to see a stoma nurse before my previous surgery as it was a possible outcome then. I'm quite a detailed person so I researched it in meticulous detail that time around. I found the appointment really distressing and overwhelming, which is probably contributing to how I'm feeling now.

I'm not sure that seeing a stoma nurse again would do anything other than reinforce that I don't feel this is something I would cope with. There was nothing they said to me back then that made me feel better at the time. I am really conscious of how traumatic I found my previous experiences which compared to this proposal were a walk in the park.

I do know lots of people live good lives with stomas and are glad for them. I don't want to diminish their experiences.

Ask your GP to refer you to St Marks London gastroenterologist
absolutely fair to ask for a second independent opinion before surgery.

For all the people who have positive (second hand) stories of having an ostomy, it is still just because they have found it the least shitty of the two shitty sticks they got to choose from.

It's one of the handful of conditions that make you eligible for a medical exemption certificate and you become incontinent with all the negative connotations that brings. We are fortunate in the UK to have very good access to medical supplies but you are reliant on that continuing for the rest of your life.

I have exactly the same circumstances. I am now bed bound most of the day with a similar affecting chronic illness. Life is shit. Pm me if you want to moan, I know exactly where you are in the shit journey through the nhs.

Thank you so much for replying. I'm so sorry you're a member of this rubbish club too. You're right, it does help when people get it. I really hope Skyrizi works for you. 💐

That's a really helpful tip about St Marks, thank you.

I'm so sorry OP and have no words of wisdom to share. I just think Crohn's is one of those diseases that people just don't understand the devastating impact of. I certainly didn't. A boss at work had it, and in retrospect I now realise that some of his odd behaviour was probably explained by pain meds, among other things.

I am so grateful for everyone who has taken the time to reply to me. I was feeling so alone when I wrote my post earlier.

My DH had a stoma bag fitted during his treatment for bowel cancer - he was grateful to have the option but ultimately found it difficult to live with and felt angry that it had been presented to him as this wonderful solution that everybody gets on well with - everybody is different, and in DHs case he found the bag a nuisance, fiddly and I think he was frightened of it because sometimes the stoma would become active when the bag was off (when washing himself or in the bath etc) and had some distressing moments with it. If I was you OP I would take some time before going with the advice of the NHS and research the best consultants you can find who are experts in crohns, then when you find one you think looks good email their medical secretary and see if you can get an appointment - you will likely have to pay if you don't have health insurance though. Just fyi - we have Benenden cover which covers diagnostics and it costs about £15 a month, it has been worth its weight in gold, but you have to be with them 6 months before you can use them. But it's worth looking into. I really hope you can find a better solution - the nhs can be a lottery of expertise so definitely go higher if you can.

I haven’t read the rest of the thread but just wanted to say same happened with my mum and the stoma has changed her life. Now she isn’t using her bowels her crohns has practically gone, no more symptoms, all her joint pain and arthritis has calmed down. Before she felt stuck in the house and didn’t even like leaving for a couple of hours, now she is absolutely fine doing entire day trips away! She is even doing better mentally as the flare ups also had a mental impact, you could always tell when she was on steroids as suddenly she was positive about life, had more motivation to get on with things etc etc. yes it isn’t nice to cope with, she was terrified about having it, but it has been so much better than the drug regime she has always been on (including some private ones that aren’t covered on the nhs).

@distraughtandhopelessibd

Would it be possible for you to see Professor Hart, OP?

https://welbeck.com/find-a-specialist/professor-ailsa-hart

I'm so sorry you are going through this. Did they ever ask you to keep a diary to see if you can pinpoint when a flare occurs? Or send you to a dietitian/nutritionist? I've many friends/acquaintances even teachers and therapists in different fields who after searching for help with the NHS gave up and turned to alternatives. Some of them had amazing success and basically switched carers due to their own experiences.
Gaps diet may help. www.gaps.me you might be able to get the book from your local library. It is written by a doctor who researched and used it for her own child, but many have used it in their path to healing. I have friends who changed their diets and saw their health improve a great deal some who used homeopathic treatment, chiropractor, osteopath even herbs. They used to see paitents over at the Royal free I think it was, doctors who were trained herbalist were treating people and they also had homeopathic doctors there. I'm not sure any of that is available anymore though on the NHS.

You can change hospitals and you can ask to be seen at a specialist centre. Look into which specialist centres are near you and they should also have a list of research trials that could be available to you.
A specialist centre will review your case and will offer you a treatment that your local hospital may not be able to provide. If you would like any more help, please message me. There is help available but knowing where to look and filter specifically for you can be challenging and unnecessarily confusing. I wish you all best.

Best of luck with it all, OP. I always find problems easier to cope with when I can discuss them with people who have been or are in the same boat. I hope the resources people have linked here will be helpful to you xx