Just need to vent

[seaface]

So after seeing 5 different gastroenterologists and 3 surgeons my original diagnosis of UC has been changed to crohns.

I have an ileostomy with a jpouch waiting to be reconnected (Might not happen now with the change of UC to Crohns), which i have had now for a bit less than 2 years. I am going back into surgery in the next few weeks for my FORTH stoma revision - not including other surgeries that have been done where end ileo has been changed to loop etc. :ybatty:

I am sick of my stoma retracting and causing so much hassle, the last time i ended up with a total obstruction from it and was very ill, ended up with a small bowel resection as well as the stoma revision.
I now travel 1.5-2 hours to my gastro & surgeon because I am classified as a complicated case and the local doctors weren't sure what to do with me!

I've been put back onto the whole smorgasbord of medications - missed the prednisone bullet and ended up with entocort instead.Which has been doing weird things to my period, i've had it heavy for 3.5 weeks now with only 1-2 days in between where it will stop and I have been taking the pill consistently, so that just adds to the fun!

I am waiting for government funding at the moment to go onto either humira or remicade. In the mean time I have just been sleeping a lot - once I get up I am ok but waking up/getting out of bed is so hard i end up sleeping till about 2:30pm most days. It feels like such a waste.

It just seems to be that I will be doing really well for a few months and then everything gets poopy (haha) and I have to stop working and just spend my days staring at the walls, getting my colon removed was supposed to make me feel better but so far it's just been a huge mess!

I'm getting my first iron infusion next week along with the whole set of scopes and apparently some stretching of areas that were too inflamed to look at last go around (eeek!). If they can't get into my jpouch then the surgeon said it's history and we might as well get rid of it. Not sure I am ready to live with a stoma for the rest of my life if I can't go 5 months without needing a revision!
The bag doesn't bother me at all, its just the retraction that makes it a pain, literally too. Skin is burning and it hurts to 'push' food out.

Anyway. Just needed to get that out I guess. I'm just ready for a holiday from being sick!
I'd love to be out working and doing fun things.
Sigh.

 

[Daisy123]

My understanding is that with Crohn's, a j-pouch is not recommended. I have had areas stretched before, as long as sedation works, is not too painful. I have read good things about Remicade, so I hope funds come through for you. I am so sorry you having such a bad time.

 

[seaface]

Thanks Daisy,

Good to hear the stretching won't be too painful, I'll be under general anaesthetic so fingers crossed. I've read the same about the J-Pouch, mine was made when they still thought it was UC.
Oh well.
I hope the remicade works.

 

[Daisy123]

My local hospital wants nothing to do with me either! I am glad you will be asleep for the procedure. I did find that it helped, although didn't work long term and had a resection. Now I have more strictures and have a flexible sigmoidoscopy on Wednesday to see if an ileostomy is the right decision. I am so scared that I might be worse off and have the sort of experiences you are having. At least in the UK, funding for biologics is not an issue. I really hope that all goes well with your scopes.

 

[seaface]

It just makes things so much harder having to travel to get treated, but I guess it's worth it in the long run.
Good luck for your scopes, usually ileostomies are fine. I think I've just had a lot of bad luck. Before I had any issues with mine I loved it, and even with then I have always been hesitant to reconnect to the jpouch because I feel like the stoma is the best option for me.
Hope they can do something for your strictures, I've only had one so far and it was horrible!
Funding here is usually pretty good, I was taken off a whole bunch of medication after my first surgery though and have to go back on it again now for a minimum amount of time so that the doctors can prove it isn't working - then I will be able to access the other medications.
I was also told that changing my diagnosis from UC to crohns would make it easier to access the medicine.

At the moment it is just a lot of waiting. An appointment here, have these tests and take this medicine, come back in a week or two, repeat over and over before anything happens.

I am going in on thursday for an ileoscopy and pouchoscopy with the stretching. Then after that they will decide what the best surgery option is for my stoma and pouch, and then I guess back again in the next week or so to get that done!

Good luck with your FS, don't be too scared if the ileostomy comes up as an option - they're pretty neat! Once you get used to it, it's much easier than dealing with a poopy bottom haha