Saw consultant today, seeing surgeon tomorrow

Not really a lot to say, since I didn't learn anything I didn't already basically know. But I do like my consultant: he spent several minutes on Google looking up the answer to a question I asked him about figures for the recurrence of Crohn's after surgery - thought that was quite a sweet thing to do <_<.

He printed out some stuff from uptodate.com - it provides regularly updated info, hence the title. Had a look at the site when I got home, but you can't read most of it unless you pay for a subscription, so sod that... >_>. Anyway, if anyone is interested, I can type out some paragraphs from the printouts. The figures seem to vary wildly, tbh, according to several factors, and medical studies often contradicted one another with regards to the effectiveness of various maintenance meds post-surgery.

All a bit demoralising, but nothing I didn't already know the gist of, I think.

We talked about whether the stricture was inflammatory or fibrotic, Humira, options beyond Humira, and pros and cons of surgery. Humira is a joke, or, rather the PCT who controls the funding is. I live no further away from my current hospital than my previous one, yet because the current hospital is in a different county to my home address, the PCT are prevaricating endlessly about paying for Humira. Don't ask me why it makes a difference, I don't know. What makes me laugh ironically is that the NHS are all about "patient choice" on their website and in glossy brochures and yet if you, as a patient, operate your right to have a choice, you get penalised for it.

Whatever happens, I'm certainly not changing hospital, so the PCT will just have to put up with me. Incidentally, Adacolumn (a very rare treatment which involves filtering the white blood cells) makes Remicade look as cheap as aspirin - it's £7000 a session apparently. I'd love to see the PCT's collective face drop if my consultant tried to get me onto treatment by Adacolumn. >_>

Surgery, once again, I'm having cold feet about. There's two problems. The first one is that the steroids fix me up for a while, I feel fine, decide I can manage like this, but then next time I'm in a flare-up and on the floor groaning in pain I'm wishing I could have surgery ASAP. The second one is keeping the disease at bay after surgery. Nothing in the way of meds have worked for me so far, so what is there to stop the disease from coming back? My consultant didn't exactly say 'exactly!' when I put this to him, but it was clear enough he agreed and had the same thought.

At this stage I almost couldn't care about having an ileostomy, or whatever - reasonably confident I could adjust to it. But dealing with Crohn's almost straight after; I dunno if I could tbh.

Sorry, not very cheery I know... :-/ I'm probably worrying too much about something that has not actually happened yet, but I'm a worrier; can't help it... =/

Anyhow, seeing the surgeon tomorrow, so I'll get her take on it, I guess.

Oh, and I had Remicade this afternoon. The nurses are so lovely there :p

'Fun' is going too far... <_<.

Oh, I know it's money. It just annoys the crap out of me the NHS are officially all, like, 'yeah, you can choose whatever hospital you want to go to in the country, isn't it great??' and in practice, if you actually take them at their word, you can get penalised for it. They don't mention that aspect of "patient choice".

That said, I appreciate I've been lucky to have got Remicade for over a year. I've nothing else to complain about so far, but it still seems a bit random that somebody living 2 miles closer to the hospital will get Humira without any problems, while I've been waiting months and still am waiting.

Stricture seems to be at least partly fibrotic, 'cos I still get some signs of having one even on steroids - I can feel and hear food going through it, but there is an absence of pain and obstructions. The pain is already very slowly creeping back though; oh joy... :-/

I'm not on Entocort. I have only tried it once (about two years ago) and it felt like a poor man's Pred to me. It did something, just not as much as Pred does something. That said, it might be useful in the future as a maintenance med after surgery...

I shall let you know :p

Hi NCOT,

I have been following your posts. Humira WAS working for me. All the inflammation was gone, the only part that was left was a stricture made up of scar tissue. The colonoscopy to stretch that stricture caused a perforation and now I have a permanent ileostomy, not by choice but it did save my life.

Try and push for Humira, if it doesn't work then you know you have tried everything you could before surgery.

Sending you best wishes,

Kelly

Thanks, folks.

To be honest, I don't have much hope or faith in Humira, given that Remicade never worked. It almost feels like Humira is something I have to 'go through', to access alternative treatments. It's kinda the wrong attitude to have, I know, but by nature I'm not exactly a wild optimist.

Also, even if Humira worked, if it's anything like the Pred, I would still have symptoms on it. Manageable ones, but it sometimes weighs heavy that I have never been in symptomatic or clinical remission.

@petittarte - My consultant is doing everything he can to delay surgery; it's the surgeon who has wanted to operate.

Tbh, there comes a point when you get utterly fed up fighting and I reached it a while ago. To me, it doesn't feel like there's any virtue in it; I'm carrying on 'fighting' against having surgery for what I feel are essentially fear-based negative reasons than positive ones.

Apologise for my low mood this morning, folks. Ah, maybe I'll feel better after I've had a cup of tea, lunch, and seen the surgeon.

Cheers, Myrne.

To answer your questions in order: scattered through the colon and TI; ileostomy; 5mg/kg every 8 weeks, tried increasing frequency to every 4 weeks for three goes, it didn't do anything extra. And finally, I have asked the surgeon about strictureplasty in the past, but I'm not a suitable candidate for it apparently - think it's because I have one long stricture (15cm) rather than several very short ones.

So yes, you are right, I am leaning towards surgery :-/

I d*mn near booked it today, in fact, but in the end I backed out. It would've been for late November if I had. But basically, I'm taking a step towards surgery rather than away it. The stoma nurses are gonna get in touch with me next and arrange for me to speak to somebody with a stoma. I feel slightly uncomfortable over that, but my dad is strongly in favour of it. Anyway, I probably should and I will. Kicking myself a bit now because I said to the surgeon I wanted to hear from somebody who'd had a stoma for a long time (preferably decades), but didn't specify the disease. Ideally, I'd really like to hear from somebody with Crohn's ileocolitis (specifically that, because it's what I have) who has managed well with a stoma for many years.

But I can speak to the nurse when she gets in touch.

Not a lot else to say about the surgical appointment really :-/ I've spoken to her at least three times over the last year already, so she knows everything about my case already. She went into the risk of dying on the operating table, which luckily is under 1%! In one sense, because no joining together is done in the type of operation I would have, it's actually kinda safer - no join = no risk of a join coming apart. Because I've been on a shedload of steroids over the past year, along with having a still inflammed colon, it would make the risk of an 'anastomotic leak' very high apparently - 50% she quoted.

I mentioned the girl I had shared a ward with; the surgeon knew I knew her because she came to see us both in the ward. To cut a long story short, she had to have emergency surgery and a temporary stoma for a year. She also developed a hernia as a result, which was making her miserable two years on. I asked about the possibility of a hernia, saying that the girl was not a 'happy bunny'. The surgeon said she's never a happy bunny. Hmm.... >_>

Seems like there is a risk of a hernia, though, which is another thing to worry about. Joy :-/

And... luckily for the reader, my memory has run out, so I can't actually type any more :p

Yes, they told me that a hernia was possible if your aren't careful. I am going to be fitted for a hernia belt on then29th for when I am running, lifting or doing anything really physical.

I hope you find someone to talk to. I didn't have that opportunity as my surgery was an emergency but would have liked to have at least talked to someone and see what one looked like. At least I don't have the pain anymore and it's nice to spend way less time in the bathroom!

Best wishes!

@novice - Chances are, I will get the Humira at some point, but the PCT are just obviously dragging it out for as long as possible. Stuff like that always annoys me, but it's not my consultant's fault: he's a good fellow.

Thanks :p

@Larasmom - Believe me, I will be careful! I'm not one for feats of heroic endurance at the best of times; I'm certainly not going to attempt them post-surgery.

Ouch @your surgery. I see from your sig you have a permanent ileostomy. That must have been quite the thing to take on board; at least I've had a long time to think, plan, and gradually come (more) to terms with it. I couldn't imagine how I'd feel if I'd had literally no time to prepare. Anyway, I hope you're doing better now.

@petittarte - I wanted to disagree with your first sentence, but every surgeon I've met has just seemed to want to cut things out actually <_<.

A few years ago I felt similarly adamant about keeping my guts intact - I think that's natural enough. For me, though, I've exhausted practically all the mainstream meds, I'm developing a Pred habit, and I'm scared every time I flare up. Theoretically, I could go down an experimental road, but in practice it would be a long, difficult, expensive and gruelling path - I don't have the energy or, in some cases, the money for it.

Thanks :p

NCOT, you are in my thoughts. Def you are the best one to decide what is better for you since you are suffering. Hope this surgery puts an end to your suffering. However, I would advise you to listen to a person who has had a stoma for decades as you mentioned and hopefully he is a Crohnie and to study all the consequences before you sign for the surgery. Discuss it w your GI. He knows your condition very well and can help you. Usually surgeons prefer surgeries since they are surgeons. One of the surgeons I see recommended I have a coloctomy though I am not officially diagnosed yet and told me that this the best treatment for indeterminate colitis while my GI warns me against even having a dilation for the narrowing in my rectum.
Take good care of yourself and good luck with whatever decision you take:)

Well, I have crohns and have had an ostomy for 6 years and I would do it again in a heart beat given the situation I was in. They had to remove my entire colon and my rectum - so you can imagine the pain I was in.