I've had it

Nobody who's had a bad fallout from surgery gets the slightest bit of understanding or sympathy or well wishes on this site. Have a good outcome, however, make threads about it, and everyone will be slapping your back, using smileys and acting like it's the best news in the world.

Meanwhile people recoil from the horrors of a "lifetime on drugs" (I don't think many diabetics would be complaining about having to take insulin for life) and speak about sugery as though having it is reaching the promised land, or something, despite the numerous catalogued short and long-term complications which can result.

For whatever it's worth, I have a brother who's had Crohn's/proctitis for 18-odd years now. He's been on a few courses of steroids, but has raised a family, worked full-time, played a regular sport and gone on holiday every year. He's never been on biologics or had surgery. I also had a cousin with Crohn's for many years who also led and full active life without having had any surgery (she tragically died young, but of a brain tumour unrelated to her Crohn's).

I've not been so lucky and there are many like me - particularly with Crohn's but also with UC, let us not forget - who will suffer from the fallout of IBD and surgery for the rest our lives. We are the spectres at the feast. Nobody wants to acknowledge us. And most people seem to sense that and fade away as a result, either stopping posting entirely or only posting very occasionally.

I do sense it but I'm too full of rage to keep quiet about it. I know it's nobody's fault but I feel so angry that nobody acknowledges my suffering and my pain. The people who are lucky get all the celebrations while the people who are unlucky get ignored and pushed aside.

I'm so sorry, I just woke up on the brink of a nervous breakdown :/

To be fair, it's not just the IBD which has ruined my life, it's many other things too - I'd probably deal with the IBD crappiness better if the rest of my life weren't so sh!t. On the other hand, there's something about gut problems which I think exacerbates bad feelings. If I eat something and my digestive system makes a pig's ear of digesting it, I feel like rubbish and sleep like rubbish. One of my symptoms in the past was feeling like absolute crap for hours after eating a meal (particularly dinner); that has come back to a certain extent.

I'd return to a stoma tomorrow (and not complain about it!) if a fairy could wave a magic wand and promise me I would have no more pain, no more Crohn's returning, and no shortage of ostomy supplies for the rest of my life.

I guess that's where the hopelessness comes in. I don't really expect the drugs to work, given my past history and the fact that my Crohn's seems to be as stubborn as I am. But I don't really expect surgery to work wonders either. I've sort of accepted that I will probably have to live with symptoms for the rest of my life - except for when I don't accept it and rage futilely about it instead :-/

Sometimes I wish we could have a reset button on our lives to use once or twice. You have had a truly miserable result with surgery. Is it worth it to go back to the ostomy at this point and would the NHS pay for it? My grandmother had Crohn's in both the last two feet of her small intestine and the right side of her colon and she had a permanent ostomy for the last 15 years of her life. She was also bipolar and was truly dealt a crap hand in life. She liked the ostomy even because it was more predictable.

nssg - Yeah, that's a very valid point about the US healthcare system. Whether you're in favour of a private healthcare system or a more socialized one, I still think it's crazy to have a healthcare system tied to your workplace for exactly the reasons you outlined. It probably worked better 50 years ago when there was far more job security and people didn't fear redundancy nearly as much as they do today. But times have changed...

momto2boys - Yes, I could go back to an ileostomy if I wanted to. I have a surgeon who knows the situation and is happy to do the operation if I decide to go down that road. I'm lucky with my hospital and current IBD team - that's literally the only thing I've been lucky with.

I will almost certainly end up going back to an ileostomy at some point. I'm putting off the decision because rectum removal is major surgery and I am also scared about lots of things: nerve damage, adhesions, the second stoma not being as good as the first one was, difficulty in getting hold of ostomy supplies, etc. I almost feel like I'm screwed no matter what I do.

Re your grandmother. I had a great aunt with Crohn's who also had an ostomy in later life. I never knew her - I only knew my grandmother (who was Crohn's-free but had been dealt a crap hand in other ways instead). I'm glad at least she got on with her ostomy. I hated mine at first, but there really are worse things you can have.

iPoop - I started 6MP on the 5th April (made a note of it as otherwise I wouldn't remember the month, let alone the day...). I was on 25mg for 2-3 weeks then had that bumped up to 50mg. I've also been on Entocort for a while. 'Cos I didn't make a note of when I started that I'm not sure how long but I started it before the 6MP. Still on 6mg. Entocort didn't seem to be doing a lot but it must have been doing something, as the decrease from 9mg to 6mg has led to a rise in all the relevant inflammatory markers (I got my blood test results today).

Next in store is a biologic - Entyvio I hope. I saw my GI fairly recently and asked him about biologics then. He said he would get me onto a biologic if it was necessary and that he does use Entyvio (has two patients on it now apparently). However I know from Remicade it won't be a quick or easy process and there will likely be a delay of a few months before I can start it. It's better than not being available at all, but still... My patience isn't getting any better -_-

I hope I never have to deal with the bad luck you have. It is useful to have reports of poor outcomes. You make a contribution.

I think there will always be congratulations for folks who get a good outcome. I hope you can get to a place where those congratulations do not make you feel invisible.

imagardener2 said...

in the past I believe you have talked about going on vacation in Spain. Pot is semi-legal there and maybe you could see if whether smoking or oral intake gives you any relief, physically or mentally. Or Amsterdam.

That's not a bad idea! Or you could come here and give it a go.

I am in CA now. I used to live in NY... NYC is a better city but our beaches/sunsets are better and the pot laws here are really liberal. I think it's illegal in NY still.

You shouldn't feel invisible. Many people here care about you a lot. I even mentioned you as one of the people who helped to guide me when I was going through surgery. Even though you were on the side of caution, it was important and helped to keep me grounded.

Well, this thinking and belief that..... "Nobody who's had a bad fallout from surgery gets the slightest bit of understanding or sympathy or well wishes on this site. Have a good outcome, however, make threads about it, and everyone will be slapping your back, using smileys and acting like it's the best news in the world."..... is wrong.

I misunderstand how any thread on other people's surgery becomes personal to you. So now there's an entire thread about how wronged you've been and for the support you've gotten..do you feel better now?

You KNOW who feels what on here and who cares and who doesn't. Try not to tar us all with the same brush. It's not a fair judgement.

q

Let's be nice folks. Many of us have very, very different points of view and experiences, although it might make us disagree it also provides a benefit of a very wide-view-picture of uc (wide scope of treatments to try, warnings, etc.).

@quincy - After your post, no I don't feel better. I don't even know why you're bothering pretending to ask, since it's so obviously clearly sarcastic.

@ByeByeUC - I dunno what I've said about you personally, but I know I've received comments from certain people that I think are more personal and below-the-belt than anything I've said to them. I also thought DMC2011 got disgraceful treatment a few months ago. But of course you don't remember any of that, do you? How convenient for both of us.

This thread has taken a turn for the worse. Thanks chaps, I love passive-aggressive comments with my cup of tea, it really makes a depressed person who is feeling on the brink with everything even better. Thank you.

My "thread locking senses" are tingling.

NiceCupOfTea said...
@Michele - You made it plain a while ago that you didn't like me, so I didn't expect a nice comment from you. You've obviously still holding a grudge from the last time we interacted a few months ago. Don't even remember what it was about now, other than I think I corrected or contradicted you over something and you got massively annoyed with me as a result, even though I think I was being polite.

Edit: Oh that's right. You claimed that 6MP worked in some impossibly short time-frame and I said it physically couldn't work that fast and it must have been the steroids you were on at the same time which brought you into remission. You absolutely refused to acept it though. PS: I've been on 6MP for 6 weeks and it's still not working!

Dear god, and people accuse me of taking things personally. Of course I do. So does everyone. The point is I recognise my tendency to overreact and that it's exacerbated by feelings of depression, paranoia, anxiety, etc. I don't seek to bring a person who's obviously teetering on the edge of a nervous breakdown down still further. If you have the fantastic, happy, brilliant lives some of you claim to have then my comments shouldn't disturb you in the slightest. You certainly shouldn't be taking them personally.

I don't hold grudges. That takes up too much energy.

Sorry the 6MP is not working for you. I hope you find a cocktail that does work for you as well as a medication to relieve some of your pent up anger.

I am now going to lock this thread.