GI appointment tomorrow, a bit nervous...

[Ian]

So I started on Humira a month and a half ago to try and get me out of my current flare but so far it hasn't worked. I started a course of Pred (40mg) a week and a half ago which improved things for a few days but soon the blood returned. I'm also on 6MP so that's a biologic, steroids, and an immunosuppressant I'm on at the moment, still with no luck

I have a GI appointment tomorrow and I'm a bit worried because I don't know what to expect... I think it's likely I'll be admitted to hospital since as far as I’m aware there are no other drugs they can send me home with - although I have a violent cold at the moment so maybe they won't want me on the ward! So I’ll probably be put on Hydrocortisone, but that didn't work last time - as soon as they made the switch back to oral steroids the blood came screaming back. To be fair there was a mix up last time and I wasn't given the right dose for the first couple of days and actually got worse, I don't know if it would be more effective a second time around without this blunder! But obviously I don't have much faith in the drug because it failed me last time.

Infliximab was my rescue drug in the end, but can they use that if I'm currently taking Humira? And is it likely to work a second time? I've heard a lot of stories about it failing because the body recognises and destroys it the second time around.

And as far as I'm aware, those are my only options before surgery - and I don't know what kind of surgery I would have; hopefully just a resection of my large intestine but I guess that depends on the extent of the inflammation... and I'm worried about the long-term effects of such a surgery, the colon is much shorter than the small intestine! :/

It’s baffling really. I don’t really have any other symptoms except bloody D. It’s not even that frequent, like two or three times per day. But man is it persistent, it’s been like 3 months. I guess I’m in way worse shape on the inside than my symptoms suggest…
I know I'm getting ahead of myself and should just wait until I know more, but unfortunately this chronic over-thinking is my coping mechanism haha. I know no one can have the answers, I'm just getting it all out really

 

[Astra]

Hiya Ian

yeah let it all out, better out than in!
I can't answer your question about the biologics, just wait to ask the experts (Gastros)
You know last night when I went to the patients forum and there was a gastro there doing a presentation?
well he told us that we can do without our colon, it's the small bowel we can't live without!
This is where everything gets absorbed and a life line. I really don't know if this is true!
But....
If they need to take some of it out Ian, then maybe it will stop all this pain and blood.
Ask millions of questions tomorrow, write it all down, be prepared!
And.. good luck
xxx

 

[Ian]

Hi Joan,

I'm sure that's true about the colon. We don't NEED it in the same way as we need the small intestine. I know that if surgery happens it will surely be for the best... it's just I'm several months away from completing a degree which would probably have to be put on hold (meaning I wouldn't graduate with my year), plus I think stress of Uni and the lack of routine are responsible for my flares (all of them have occurred while I've been studying) - I feel like if I could just get to the end without being cut open I might be able to get back into a proper remission and really take care of myself... it would be a shame to fall at the last hurdle! Plus I don't just worry about the prospect of surgery itself, but lots of other aspects; pain, recovery period, scarring, lying naked on at table in front of lots of people lol... and my biggest concern is ending up with constant D due to a shorter bowel (or a bag). D is pretty much my only symptom of Crohn's (other than the bleeding) and completely disappears when I'm not flaring, so it would be horrible to end up with it chronically as a result of an irreversible surgery...

Yep, still over-thinking things too much! I guess if it happens I'll just have to suck it up!
How did the patients forum thing go by the way?

Writing down my questions as we speak! This will be a long appointment haha. I'm also drawing up a list of things I'll need in case I get admitted (dongle for laptop, books, ear plugs, air freshener, wet wipes...), and a list of appropriate foods my mum can smuggle in for me since the low-res menu is rank!

Thanks

 

[Mark63]

Hi Ian,

Nothing else I can say but good luck for tomorrow. Let us know how you get on.

Regards,

Mark

 

[xJillx]

Ian, I over-think things, too. And it can drive me nuts! I know you want to prepare yourself for what you may hear tomorrow, but don't jump ahead of yourself just yet. I wish you all of the luck in the world tomorrow! Keep us posted!

 

[ameslouise]

Ian, good luck tomorrow! I hope you and the doc come up with a good plan of attack.

And I am here to tell you, you CAN live without your entire colon! Wanna see my scar?

Pop in tomorrow and let us know how the doc appt went!

- Amy

 

[Astra]

Aw Ian!
Hopefully they won't open you up there and then tomorrow!
I've had surgery (not Crohns) and you leave your dignity at the doorstep! The surgeons have seen it all before. Yes, I lay there naked looking like the last chicken in Sainsbury's, the one everyone has manhandled and thrown back on the shelf!
If you were my kid, and surgery was elective, I'd tell you to wait too til Uni was over.
Can I just add? Stop thinking!
Oh, the patients forum is on a thread, read all about it!
lotsa luck
xxx

 

[Ian]

Hi everyone,

Well I had a sigmoidoscopy which revealed I am very inflamed (I already knew that, even though my blood work said I wasn't - typical!). The inflammation is largely in the last 40cm of the bowel (some milder inflammation further up that was of less concern). I'm to carry on with my meds and be seen again in two weeks.

Hopefully things will improve, but if things have worsened I'll probably be admitted to hospital. He told me that the worst case scenario would be a surgery to have the inflamed part removed, possibly with a temporary ostomy depending on the state of my colon when they open me up. So in a way I'm relieved; even if the worst case scenario happens, it doesn't look like I'll be losing my whole colon or something! But I'd be interested to know how much this would affect my b/ms for the rest of my life... and a surgery before June isn't very practical for me, I really would like to graduate on time!

Unfortunately, after my initial appointment with my doctor, I was examined by another doctor; I was told I'd get to see my doctor again after the flexi-sig but I didn't in the end (I think I finished later than planned). So the doctor who did the flexi-sig spoke to my doctor on the phone and relayed the conversation back to me. As a result I wasn't able to ask questions about what would be attempted in hospital if I get admitted (so I still don't know if they would try Remicade again as a rescue drug since I'm on Humira).

So back to waiting and seeing, but at least I have some answers to some of my hypothetical questions!

 

[xJillx]

I really hope things improve in the next 2 weeks for you, too! But if you do have to be admitted to the hospital, hopefully they will be able to get things under control and avoid surgery. Keeping my fingers crossed for you!

 

[Ian]

Thanks Jill

I'm preparing myself mentally for the surgery so that the worst outcome is the one I'm expecting. No nasty surprises then! But yeah it would be great if I could improve, either at home over the next couple of weeks or through hospital treatment. We shall see!

Better start drafting the email to my University tutors - they won't be seeing my Dissertation for a while!

 

[ameslouise]

Hi Ian - Well, sounds like you have a plan of action. Hopefully you will improve over the next two weeks! It's a drag that this is all coming at this point in the semester for you - fingers crossed that you will improve and you can graduate on time. We're all rooting for you!

xo - Amy

 

[Ian]

Thanks Amy!