Saw my surgeon yesterday + plus heading for a nervous breakdown

Way to shoehorn two subjects into one title.

Anyway, I spent the last day of 2015 seeing my surgeon. My mum came with me this time. I think she had the idea I wasn't telling the surgeon anything, when in fact I find her (the surgeon, that is) quite easy to talk to and Crohn's is one of the very few subjects left in my life I am vocal about.

There's not very much to report. I saw the images from my flex sig. There was inflammation and ulcers that were typical to Crohn's. Just as well it looked like Crohn's, because the biopsy results weren't actually back yet. For reasons too long and boring to go into, this time I actually wanted to know my biopsy results, but it'll have to wait until next time, I suppose.

I expressed my fears about a stricture based on the amount of pain I was having. The flex sig didn't appear to show anything, so my surgeon has ordered a small bowel MRI. I feel a bit guilty for having all these tests, almost like I'm on a one-man mission to bankrupt my hospital or something. We talked about the pros and cons of steroids. Basically, if I take steroids and respond, that will be a very good sign my abdominal pain was caused by Crohn's and not, e.g. adhesions. However, my surgeon did say she'd rather I avoided steroids until after the MRI scan, which is fine by me. I've had experiences in the past of steroids removing an inflammatory stricture and my IBD nurse telling me everything was hunky dory as a result, so I fully understand my surgeon's reasoning.

She was very, very good, the surgeon. As for non-steroid medication, I'm seeing my GI in a couple of weeks, so we agreed to leave that to him. Not like the options are that great, but even if I booked surgery tomorrow I'd still be waiting a few months - might as well try something in the meantime.

This post is already longer than I anticipated, and I haven't even covered the nervous breakdown yet.

Basically, I'm just having massive anxiety attacks all the time. Had one on Christmas Day which ended in me running out of the house, driving away and sobbing my heart out for an hour in a dark country lane. That still was more fun than the weird guilt-tripping which was to follow from my dad on Boxing Day. (On the plus side, my friend was marvellous on Christmas Day, texting me for hours.)

There's more, but suffice to say eating now induces terror in me. It's the pain. It's the one symptom I can't stand. I do take painkillers - more than I feel comfortable with - but they don't always kick in properly or last very long when they do. The pain isn't severe enough that I can justify a visit to A&E, and I'm not having systemic symptoms like fevers. But it goes on for hours, which it never used to do, and it's very hard to ignore.

I have no safe foods. Low-residue still causes pain, maybe not as much as a bowl of undercooked broccoli would, but I still suffer for many hours.

And my mum doesn't understand why I'm so anxious. Or what it's like to be terrified of a basic function that is unavoidable, i.e. eating. And to say I'm not sleeping well would be an understatement.

Thanks gumby. Really sorry to be so depressing, but on the other hand getting it out of my system before my parents and my mum's friend arrived helped me to cope with them. Didn't have any lunch (and I never eat breakfast), so by about 4pm I was pretty hungry. All the supermarkets were closed, so we ended up going to Nando's and having an early dinner. I abstained from alcohol, even though I wasn't driving, 'cos I really don't think that helps at all. I'm currently in the honeymoon phase of the pain cycle, where I feel comfortably full and not in pain yet.

Going to see Star Wars with my aunt and cousins tomorrow, so again I'll probably skip lunch to get through that.

It does get tiring, doesn't it? I know it's pointless, but sometimes I can't help thinking about the past when I had no GI issues whatsoever. Even the early years of my Crohn's were far, far easier than this - I had no pain back then. If only we could have man-made guts, made out of titanium steel or whatever :-/

In a way I hope it isn't IBS. Having c. diff gives you more scope for treatment, whereas with IBS there's not really a lot you can do - all the IBS sufferers I know just seem to have to put up with it, unless you're pb4.

For the same reason, I also hope I don't have IBS. Or adhesions. As weird as it may sound, I'd almost rather have Crohn's than those two. At least it can be either cut out or treated with medication.

Ooh, IMAX theatre. I'd go on my own to that if I had to, tbh. Sadly we're just going to a regular cinema. I'm not even sure if it's the 3D version, although I hope it is.

IBS won't get worse, true, but the idea of having pain without any detectable physical cause for the rest of my life drives me nuts. Until something is found I'm actually nervous about returning to an ileostomy, in case that doesn't knock the pain on the head.

Thanks gumby :-/

Hang in there! You will definitely watch future episodes of Star Wars in 3D IMAX.

Watched the movie in 3D IMAX, I guess it is better than previous episodes, now that George Lucas sold away the franchise to Disney.

Same food and pain issue for me with my stricture. Hope you will recover soon and pain becomes manageable.

I know people hate this but have you thought of TPN

Hi guys :p

Well firstly, the film was really, really good. Very enjoyable. Won't talk about the story 'cos there are people who haven't seen it yet and it's a bit off-topic for a Crohn's board/NCOT whinge-fest, I s'pose.

Secondly, I'm seeing my GI next week and I have got to talk to him about pain relief. I'm getting by with necking ibuprofen (I know, I know, I know) and codeine - not at the same time, obvs. Yesterday I ate very little and didn't take any pain relief. Had an interesting night as a result. Woke up at 3am with itchy, hot skin, which took about an hour to settle down - I think it was a minor codeine withdrawal symptom. (Long story short, I had a similar thing with oxycodone a few years ago, but much much worse.) Eventually got back to sleep, then woke up at about 5am with lower right quadrant pain/pressure. Laid on the bathroom floor and massaged my stomach for about an half an hour. Still had problems for a while after that, but eventually fell back to sleep without needing to take a painkiller.

I think I'd rather risk stomach/duodenal ulcers than opiate addiction. Incidentally, my parents are supplying me with the codeine - I'd be even more dependent on ibuprofen otherwise. But I do have a bit of tramadol left from my last surgery, so I'll use that up now.

@cdinhyd - Pretty miserable, isn't it? I see from your sig that you have a stricture. Hope you can get that sorted this year, either via meds or surgery.

@thatgirlmarie - I saw it in 3D. It's good 3D, if that makes any difference.

@Dikid - Don't think I'd be a candidate for TPN until I lost about another 50lb :-/ I'm not overweight but nor am I underweight (BMI is 22 now). I'm not one of those ones with IBD who have serious trouble gaining weight - almost the exact opposite, really. It took me years to become underweight the first time with Crohn's, it'll take years again, probably - I am currently losing weight, but slowly. (I did have some drastic weight loss after my last surgery but that levelled out ages ago.) The thing is, I can eat. Painkillers make it easier, but even if I didn't have those, I suspect natural hunger would drive me to eat a large meal after a while. I don't need a lot of calories to maintain and, with a mostly normal appetite still, eating/drinking 1200 calories a day is pretty easy.

@Skyflyerjen - Yeah, I can tolerate everything except pain. Oddly I didn't really have a pain as a symptom for the first 10 years I had Crohn's - well, I never had a stricture before then I suppose.

Wow, @gumby44, I must be really tired. I skipped a few lines in your post, and read that you enjoyed Harrison Ford and the gang, but are strongly suspecting the evil c. diff. is back. It took me a minute of trying to figure out who Darth C. Diff. was and where he had come from!

Ha ha Scifi, I should have put it in separate paragraphs!

NCOT....sorry you had another bad night.....it sucks!!

here's the list of side effects from drugs.com and fever is on the list: http://www.drugs.com/sfx/levothyroxine-side-effects.html

I often get chills when I'm in pain....I don't know if it actually drives up my temperature. But also, I'm wondering if the levothyroxine messes with your hormones and you are getting hot flashes? But, you also have gotten fevers from Crohn's flares in the past, and really, that is my best guess at what's really going on. I don't know whether or not telling your GI will help to speed up the MRI scheduling or treatment, but maybe it's worth a shot.

It wouldn't surprise me if you are having low grade fevers because you are in an active Crohn's flare. Get a decent thermometer because recording your fevers will give you more objective info to give to your GI.

I can't wait to go see my GI tomorrow....I'm having really bad D today. I know he said that it takes a month off antibiotics before you can re-test for c.diff, but I really think it's back. I wonder if he will re-treat based on symptoms? I kind of want a fecal transplant, but I doubt he'll do that without proof it's really c.diff that is back.

It really sucks that we have to wait around being sick for long periods of time before getting treatment. This seems to happen every time I get sick with Crohn's or GI infections. I know you are in the same boat.....I would love to just have a normal boring life!

Two updates:

1. Got a date for my MRI scan - 5th February. Not ideal but could be worse.

2. Total scenes in a restaurant tonight. I'm sorry, I cannot even begin to describe it again for a second time. I've made a thread which you can't miss on the UC board if anyone is interested. Speaking of which, I dunno why I make some threads on the Crohn's board and some on the UC one. I post pretty equally on both boards now, though.