New here!

[Loogle]

Hi, I have been reading for a while but have only just joined. Am at a loss with my body at the moment. I had a left hemicolectomy in Feb which ended up in the removal of my sigmoid, descending, transverse and part of my ascending colon and now have active Crohns in my rectum, ceacum and on my appendix. Have previously tried Infliximab (didn't work), 6MP (bad reaction), Azathioprine (bad reaction), pentasa, elementary, prednisolone, which I refuse to take anymore (with full support from my Consultant).

Docs are now 'labelling' me complex :shifty: and really don't know what to try next.

The forum has been a great source of advice and its reassuring to know there are people out there that are having to deal with the same or similar situations

 

[xJillx]

Hi Loogle and welcome! I am so sorry to hear your Crohn's has been so challenging that you are now a "complex" case. With the removal of your descending, transverse and portion of your ascending colong, do you now have a stoma?

Have you tried Humira? Though Remicade didn't work, there's a chance Humira could help.

 

[Loogle]

Thanks for the welcome. No, amazingly I escaped a stoma! I went into the theatre all marked up for one and I remember thats the first place my hand went to when I came round. Haven't tried Humira, I had an urgent appointment yesterday and my consultant asked whether I had tried that, he made a note that I hadn't and then said nothing more. Will research it and perhaps its worth mentioning it to him. I am having a colonoscopy on the 30th and it appears that he is going to 'hand me over' to his colleagues that are apparently involved in some trials that may be suitable.

 

[Angrybird]

Hi Loogle!! It looks like you're from my neck of the woods If you don't mind be asking which GI doc are you currently under? I agree with Jill about the Humira, this has been suggested to me as the next thing to try due to my previous reactions to Aza and Infliximab. I have a colonoscopy booked for the 20th -wahoo!- and this is to see if my crohns is flaring or if I am still have post op scarring settling down. Considering I have not been on a treatment (apart from modulen) since June I think it may be the crohns. I agree about the pred and have declined it on the many occasions it had been offered to me leading up to the op. Anyway welcome to the forum :bigwave:

 

[Loogle]

Hi Angrybird, looks like we are I currently see Dr Cameron at Addenbrookes, he is fantastic but I think his knowledge is slightly limited compared to some in the gastro department! His bag is really colorectal cancer. Also had another op in October to remove my gallbladder as had been suffering with pancreatitis since May, overall it been a pretty rubbish year! Who do you see? Do you go to Addenbrookes?

 

[Angrybird]

Yeah I am at Addenbrooke's. I am under Dr Middleton in the gastro team and he is really nice so hopefully you will get him. He has a registrar that I sometimes see and she is called Dr Pither so if you can't see him demand to see her They also have an IBD nurse called Sister Nightingale!!!

 

[Loogle]

Yes I have seen Dr Middleton a couple of times but not for a long while. Sister Nightingale scares me a little :blush: I am more used to dealing with Fran Bredin, another IBD nurse, who is lovely but I'm not entirely sure she is still there? Had a meeting today with another today called Kathy, she discussed Methotrexate with me as I have been offered that as an option but I am slightly nervous about that route due to the reactions I have had with similar drugs. Any advice regarding Methotrexate would be appreciated.

 

[Angrybird]

I am afraid Fran has left, I liked her a lot more than Sister Nightingale too. I would say that the only thing about the Methotrexate is the implications of it - my GP really told me off once because I was slightly late with my monthly blood test and they said if I was not prompt with these they couldn't renew my prescription - they have to keep a very close eye on your blood count whilst on this. They also give you small dose tablets so you don't accidentally overdose on it - this could be fatal in certain circumstances. I stopped taking it because I want children and that is an absolute no no whilst on this drug and for about 12 months after you stop taking it. I didn't have side affects as such although I don't know if the case of shingles I had was down to being on it. I know it gets used in the treatment for arthritis and sometimes cancer.