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.

Grow up

How self centred do you have other be to read

"Also? Trust me when I say that we've usually tried everything, and being asked this minimises our genuine pain and distress"

and immediately reply with a defence of alternative medicine?

You’ve already had good advice about seeking a second opinion, possible trial drugs etc.

Could you afford to see a counsellor as an independent real life sounding board as you navigate this current phase? Posting here clearly helped so I would do what you can to feel better supported emotionally as you navigate the NHS, decision making, being assertive to get the best outcome…. Wishing you all the best 💐

Have you had an occ health referral? I know they won’t be able to do anything to help with your condition (sending hugs, it sounds awful) but you can start the process of getting adjustments documented and a formal record of your needs. I suspect your work don’t understand how bad it is - I don’t think I did until I read your post. Also worth stalking to your union (or joining one if you don’t have one) for further ongoing support.

OP ive a really close friend who had to get a stoma at 19y. She had run out of other options and was terrified and refused it for ages but she was told she would never leave hospital.
Anyway she got it done because she had no choice, shes now mid 30s with a little girl and long term partner who she met after the stoma.
I definitely think you need some emotional help and support. You sound like you have ptsd from your last surgery and will do anything to avoid another which is understandable. However it may get to the point (even with every possible drug or treatment available) that surgery is required and I do think its important that you make space for that possibility. Dont make having a stoma the worst possible outcome or the worst thing that could ever happen to you because you will only be setting yourself up for failure. A stoma could be something which gives you your life back. I have had 4 surgeries and tbh never once looked into the detail of what would be happening to my body cause honestly i dont think it matters that much. It was the doctors job to do the surgery and my job to recover. I think by looking into every gritty detail you could be causing yourself more trauma

Its not that doctors are worried about their budgets per say but if the funds for alternative unproven treatments aren't there, they aren't there. Its not one or two doctors make these decisions, its a board and that board is usually made up of people across multiple hospitals and health boards.

Lastly I'm surprised you've been told that things like pain and inflammation wont get better cause in a great deal of cases they do.

Im so sorry youre going through this and are so upset by this. Definitely check and see if IBD nurses know any local support groups or even if you have a local fb group you could post anonymously and ask about support groups?

@ApiratesaysYarrr - thank you for answering the OPs thread, because you’ve answered a question I had regarding biologics & the prescribing of multiple when one treats one thing, & not another, but your original biologic treats the new thing you’ve been diagnosed with! Hope that makes
sense! You’ve given me a new line to pursue regarding my secondary autoimmune disease, so thank you so very much 💐

Ask your specialist nurse to put you in touch with someone of similar age and health conditions who has had a stoma. I recall on my colorectal ward we did this with a teenager who thought her life was over, she spoke to someone of similar age and a while after having her stoma when she returned for an appt, she mentioned that she had got her life back and she could do ‘normal things.

I was a teen when I had mine and the stoma nurse arranged a similar visit for me. I can’t say as it made me enthusiastic, despite the reported better quality of life, but it did reassure me that I could cope with it.

My good friend has had a urostomy for over 20 years now. Whilst it’s not the same it’s similar. She works as a HCSW with a DN team so really physical. She says it saved her sanity.

Yes her bag has burst/leaked but work have been supportive as have her friends

Op can I sum this up for you -

1. You can get a second opinion. If you want to do it quickly you may have to pay. You'll need a list of what has been tried already and when. You can ask for your medical notes to show a new doctor.
2. Specialist centres may be able to offer more options, if only as part of a research trial with no guarantee you'd get the treatment and not a placebo.
3. You believe that surgery will not change most of your problems but the message coming from those who have been through it is that it may do a lot more for you than you think.
4. Take time to adjust to the idea.
5. You are stronger than you think. You will adapt if you have to.

Can I add to this excellent summary:

5 is true. But its not fair and its not right and you are allowed to cry and be upset and rant about how fucking unfair it is that this illness has robbed you of the idea that life is pleasurable and instead turned you into someone who has to just bloody adapt and survive.

Oh wow thank you so much everyone. I stepped away yesterday as I was feeling a bit hollowed out and shattered. Felt almost numb by the time I fell asleep last night and then woke up this morning and it all hit me again. That horrible heavy feeling in your chest as you realise it wasn't just a bad dream.

I had really let myself believe that the latest drug was going to be the one that finally helped me and gave me my freedom back. I am feeling heartbroken it hasn't worked and a very noisy part of my brain is telling me it must be my fault.

I have been really touched by the support, compassion, information, tips, stories and just human connection on this thread. I appreciate it so much. I have been reading though all your replies and taking notes of information, ideas, and kindness that has made me feel less alone.

To try and answer a few questions:

• No, I've never seen a dietitian despite asking (several times).
• Never been asked to keep a diary.
• not sure I have really had most of the routine monitoring or support that Crohn's and Colitis say should be standard (from reading their website)
• when I tried asking about the role of hormones was dismissed
• on reflection, I must have broken down in tears during all of my recent appointments. Nobody has mentioned any counselling or psychology services to me or raised the question of whether I need support.
• they do have IBD nurses but I have only had rare interactions with them, they're not easy to contact, and if I'm being honest I didn't feel listened to or helped when I have interacted with them. (I'm sure other patients may feel differently, I personally just haven't had positive experiences)
• clinical trials have never been mentioned other than the comment about new drugs coming onto the market or them telling me what side effects were identified during trial phases

Next steps?
I think what I want to do next is request a second opinion from a specialist centre. There are a couple of charities I might contact first to see if they can give me any info or advice on that, just to try and increase my success rate with asking my GP and/or consultant.

The official NHS website seems to have taken down the pages about second opinions (I found some old links on external sites) but it seems that you would be treated as if you were an ordinary referral for first appointment at that hospital albeit only for second opinion initially. In terms of waiting lists. Then you could potentially have a discussion about whether to move your care there afterwards.

I didn't even realise that you could request a second opinion from another hospital or move hospitals without moving house. I genuinely thought if I wanted to move hospitals I would have to relocate to be in a "catchment" area for that hospital. I don't think Right to Choose existed when I was originally referred for secondary care investigation and then diagnosed with Crohn's. It was just "this is your local hospital so this is where you're being treated".

I do want to say that I don't think my care team are bad people or bad clinicians, but as a pp astutely observed I do think it is fair to say that I have had a fairly horrendous time of it and have lost faith in them as an understandable result. Even if there really are absolutely no other options, it would be easier for me to make peace with that if I knew I had properly exhausted everything.

I am in the privileged position that my life is not currently at risk (whereas that was an issue last time I had surgery) so I can wait for a second opinion and potentially for other treatments to come onto the market that I could try in future. Feeling like I have choices and some control I can exercise helps (even if I can't get my perfect outcome of not having Crohn's or any Crohn's related problems anymore!).

Tomorrow/work?
I am not sure what I am going to do about work yet but it's only Sunday morning. I like pp's suggestion to do one task per day and look after myself for the rest of it. It has also been helpful to see how many people think it would be wise and normal in the circumstances to need some time off. I am not always very good at giving myself permission to do things like that.

I am someone who doesn't normally want to make a fuss and I worry about letting people down or burdening them, so I perhaps have been quite guarded and circumspect whenever I have spoken to work about this. I do try to put on a happy front because I don't want to bring others down. So it is entirely possible that they just don't understand how difficult this is/has been for me or what I am dealing with.

Sorry for the essay, trying to respond to all the posts since yesterday. Really, I cannot tell you how much this has helped and comforted me. I'm so glad I posted.

I would definitely agree with this. Different issue, but a family member had a one-off private appt. with a specialist consultant in the field, who had the time and capacity to listen, first and foremost, take them seriously, take account of the entire medical history and come up with several possible courses of action, then they were directed back into the NHS, but with the clout of the consultant and his recommendations behind them.

Is there any way you could have a discussion with your manager/HR, if your company is big enough to be organised that way? Maybe if you can convey to them the significant implications of what the hospital are telling you currently, you might feel more understood at work?

I think it's definitely possible that people at work have no idea what this means for you. To my shame, I once vaguely used to think Crohn's was just a bit of gastric trouble.

I’m a bit late to this and I’ve nothing helpful to add, I just wanted to say that I’ve only very recently realised after a friend’s experience with crohns/cancer what a very serious condition it is. I really had no idea, I am so sorry to hear that you are dealing with this. It seems unbelievable that in this day and age we don’t have more options.

Thank you. To be fair, I struggle to remember the person I was before this all started but I'm not sure that I would have really understood the significance either if it hadn't happened to me. It's such a tricky thing to explain and a lot of the impact is hidden from other people's view.

I think once I've got my head slightly more together I will try and talk to my manager a little bit more openly/clearly about what's going on.

I know work is work and appropriate boundaries are important, but one thing I've realised from this thread is that feeling understood does help. Whilst there might not be much anyone can do to help or change the situation, it might be easier for me to manage and identify solutions if I wasn't trying to deal with it on my own and feeling I had to completely hide it for everyone else's sake.

I don't want to burden my manager but there is a middle ground between doing that and keeping it all to myself. Then if nothing else the door is open on the conversation if I do need to request specific practical support if matters progress. And maybe they will have practical suggestions I hadn't thought of.

I just don't want to end up with work viewing me as a liability but I hope they won't.

Remember you have legal protection as this is a lifelong disability. If you are with a big employer, have a chat with their occupational health and get everything formalised. As shown by this thread you'll keep coming across people who think diet, turmeric or alternative treatments will fix you. So get as much support ftom as many people as you can.

Thank you for taking the time to reply when you're in the thick of it yourself. I'm sorry for what you've been through - but I'm glad that you're starting to get used to it and have what sounds like such brilliant nurses around you. Feeling well supported can make all the difference in difficult times I think. I hope your recovery goes as well as it can and you're able to get back home soon x

I go to UCLH and live nowhere near. Someone advised me to get myself referred there. Yes, the trip is annoying but they are absolutely top of their game. They couldn’t believe some of the stuff my local hospital had said when I first went. They were like ‘that thinking went out 5yrs ago’

I am sad to hear of this OP. I wonder if considering radical alternative options like Dr Joel Fuhrman’s approach to nutrition would be worthwhile. Personally I have benefited hugely from this kind of way of living, and I started with a fast at Sura detox.

@distraughtandhopelessibd

OP, do you think that you would be able to consider a private referral, as I suggested?

I think that making an appointment to see someone would be a comfort to you and thus worth the expense.

Crohns for 26 years here and never had remission , ten years ago I asked for a stoma bag as I basically couldn’t control my bowels and had become house bound - it’s not easy but saw a new gastro last week who said about reversing it as having some issues with magnesium etc and told him I’d rather die. Yes still have some joint pain but I have a life - it’s a lot easier having the D contained by a bag versus soiling yourself or being afraid to leave the house. If you have any questions happy to answer them , I did have a stoma in an emergency about 20 years ago that was very quickly reversed and I found it incredibly difficult because I wasn’t mentally prepared but this second one has been my choice and that helped a lot mentally

I did answer up thread but there is a thread for autoimmune conditions.

Can you afford to get a private consultation? I know of at least one chron’s specialist who trials new drugs.