I think I had pinned my hopes on surgery too much

Ncot, I've had three surgeries, the last one done about three and half months ago. I also put a lot of faith
in having these operations, but alas, it hasn't worked. I'm actually back to square one again, looking at
TPN therapy square in the eye! So for some, surgery is not the answer...

I'm sorry you seem to have been dropped like a hot potato, that really shouldn't happen. Did he say why
he didn't need to see you. Surely they do need to take care of the inflammation they found.

Meanwhile try and keep your chin up and never give up hope!!

NCOT, I have had 4 resections. 1 of them I got remission from. 2 I got a few months, and my most recent one, I am no better. So surgery is not always the answer. I wish I had gotten rid of my strictures with ANY type of medication and been able to avoid surgery. The longer you can put it off the better. While it is true that most CD patients will need surgery at some point, once bowel is removed, it can never be put back in, and there are permanent consequences to it. Like constant D, possible short bowel syndrome, malabsorption, vitamin deficiencies.......

You should be able to get another script for the fortisips and gradually add food back in. You need to try food and not be afraid of it. Have you had trouble since your stricture has healed or are you just afraid because of the past? Start with soft food and see how it goes. Follow Stripey's advice and have your GP contact your GI about a follow up. All very sensible plans instead of doom and gloom.

Phew. It told me I didn't have permission to post, so I thought I might have been banned! :-/ Seems like I had been logged out without realising it, that was all. Anyway, here is my post, which I was fortunately able to salvage.


Thanks, folks. I have to say, it must be miserable to go through surgery and not feel any better afterwards - I feel for the ones who have been through that.

@Zanne - I do have a bit of pain still. Nothing intolerable, but it doesn't exactly encourage me to tuck in. Up until not that long ago, I would defiantly eat whatever, but the experience of the last few months has just made me - at long last - go in the diametric opposite direction.

@stripey - Your post has persuaded me to make an appointment to see my GP; I was thinking about it anyway. Quite often he seems to get info which doesn't filter through to me, so he might have heard something I haven't. I'll mention the Fortisip to him and see what he says. I dunno if this sounds stupid, but I feel a bit guilty about asking for a repeat prescription when I know how hideously expensive it is. I suppose I wouldn't need as many as 8 a day anymore; 4 should do it, just about...

At any rate, there are signs that my depression is lifting. There is something peculiarly horrible to depression; I can be in all kinds of bad mood w/o being depressed and they are all tolerable. But depression just makes literally everything seem uniquely bleak: it doesn't let in a chink of light or hope anywhere. Apologies if I sound seriously negative during those times - it does seem to help if I express it somehow, so thanks for letting me do so, even if it can't be much fun to read.

Thanks muchly, YP9 :p

NCOT, I wonder if you've been able to do much reading about illness? I don't mean on the internet; I mean real books. I spent some time reading around this topic a few years ago, trying to sort out my own feelings, and apparently what you are experiencing is extremely common.

Too tired to write more about it now, but rest assured that you're not alone, and also rest assured that you could really benefit from talking about this with your counsellor, as it's not an uncommon problem at all.

As for healing, please do be patient. It takes a long, long, time to rebuild your body and strength.

Ivy

I remember what an achievement it was to be able to walk up a few stairs, years ago, after I first started Infliximab. You'll get there.

Re books, I think your best bet would be to go to the library in your nearest town (not your village, I think). Don't be afraid to read the cancer literature, either, as there is often some great stuff about healing and recovery in those books, too.

Most of my books, I picked up at op shops and garage sales and library discard piles, but you can see them on my LibraryThing account, if you're interested: listed under illness / disability.

Tired, tired, tired. I want a holiday from my life (I expect you do, too).

Ivy.