Absolutely Gutted

Bit of a long post ahead - sorry.
Hi all,
Went for my 2nd infliximab infusion today. Got 1 hour into a 2 hour infusion and started feeling dizzy. I am talikng having to grip the edge of the bed because I thought I was going to fall off.
They reduced the flow and waited to see if that helped. I got dizzier and then after 1 hour 30 I felt like I couldnt breathe and had to gasp to get any air.
Well they acted very fast and turned off the infusion and flushed the line through with saline. They took my blood pressure and it read 208/110. Mmmm was a bit worried about that!
Anyway it eventually came down over the next 2 and a half hours to 158/95. They gave me piriton and hydracortisone(sp?)
They phoned my IBD nurse and she left clinic and came up to see me. She was so lovely and nice and told me not to worry. But I knew she was sugar coating it for me and I asked her not to, so she has told me how it is.
Basically if my colonoscopy on Thursday shows no sign of crohns in my small bowel I will be having a discussion in the near future with my consultant and a colorectal surgeon to see what surgery would suit me best - j-pouch or permanant/temp ileostomy, they are not sure yet. If it does show crohns she said they are not sure what to do so will call a meeting of myself, her, my consultant and a surgeon to discuss where we go from there. Scared!!
I am upset and gutted about the infliximab, it wasnt until they said I couldnt have anymore that I realised how much I was hoping that this was my cure all.
Any and all thoughts and advice are appreciated and as always most welcome.
I am going to bed and snooze. Exhausted!!
Sharon xxxxx

They don't want to try humira? I know some will have similar reactions but some people do react to remicade and not necessarily to humira. Maybe that could be an option for you?
I hope everything gets better soon.
Good luck
~J~

Sharon, I know you must be frightened senseless! I sure wish I could be there to help you personally.

Just do one step and one day at a time. Surgery is frightening. But you may find it is what gives you your life back. They may just do a resection. You dont know yet, I know it's hard not to stress. But dont yet!

Sleep if you can. And know that a temp ileostomy is not the end of the world, not even a permanent one is!
http://www.crohnsforum.com/forumdisplay.php?f=46

:kiss: I wish you well.............huuugggggggggggggsssssssssssss

Hi there, I too am in the same boat that I can't have infliximab due to allergic reaction. I have started having issues again since my surgery and humira has been mentioned to me so my docs obviously don't think that I'll have an issue with this despite my reaction to infliximab so as J says this could be an option for you too. Try and keep calm and I wish you good luck.

hi i too had a reacyion 2 infliximab they decided i should try humira which i start tuesday fingers crosed .hope you feel beter after good sleep.

Definitely ask about Humira before going down the surgery route. Allergic reactions are much less likely than with Infliximab.

Hi everyone.
Many,many thanks for all your words of encouragement.
They have said that because I have only been dx with UC at the moment they wont try me on anything else at the moment. So I have to wait and see what the colonoscopy says on Thursday.
Have been looking into the surgeries and have had a look at the other forums on here and I have to say a lot of people do say it was the best thing they did. So not quite so worried about it now!
Am going to have a really good talk with my husband and see what we think would be best for us to do but we still need to wait for the test on Thursday, but at least we will know the options open to us before we start. If I need to have surgery I would rather it be on my terms than have all the decisions taken away and be an emergency.
Woke up in the night with horrid pain in my left hip and couldnt bear any wieght on it at all. Took the usual paracetamol and put some ibuprofen gel on it but still cant walk properly. Anyone know if this is another reaction?
Have been in flare since November 2010 and have had enough now. Very clearly me and my colon were not meant to be together forever!!
Will update you as I know more.
Sending you all lots of love and big hugs.
Sharon xxxxxx

I hope it goes ok, Sharon. If it helps, I had my colon removed in October and now have a permanent ileostomy. I didn't have to have it done. I was actually feeling really great and life was going well for me. But inside I had bad strictures and after an emergency admission for an obstruction, I realised that like you, I wanted the surgery on MY terms at my specialist hospital. Not as an emergency at my local hospital. Especially when my hospital were offering to do the operation as a key hole procedure.

Anyway, I had the op and not regretting it at all. As long as you are mentally prepared, dealing with the bag is fine and I actually love it. I forget it's there half of the time. And now I don't have to worry about going to the loo and no pains! It's great! Obviously there are still post operative problems which still need to be sorted out. But hopefully once I'm fully healed I shall be fine. Even the worst scenario isn't always as bad as you think it's going to be

That's awful I'm in a sort of similar position, my consultant said if the biologics don't work for me it would mean a bag for me. Like the others have said do they not want to try humira??
Hope you're okay
xxxxxx

Sorry to hear that Sharon, that sounds very scarey. I think we all go through the process of finding something that might work for us. Sadly sometimes we have these setbacks. Mine wasn't scarey like yours was, I was on methotrexate & it was absolutely trashing me for 4 days out of 7 post jab. So its been stopped, which was disappointing as i thought it was doing some good but the side effects if anything were getting worse & my specialist said that sometimes you have to follow the bodies reaction.
I do hope you find something that works for you
Best Wishes
Grant

Thank you all for your replies.
I have started bleeding again today so dont think even the Infiximab was going to stop it.
Am going to see what the colonoscopy says on Thursday and see where we go from there. I am nnot due to see my consultant until 30th December, but I dont think I can wait that long. I wont enjoy Christmas with that hanging over me. Will see if I can get in during the week before Christmas I think.
Huge thanks again for all your support and advice, it really is lovely to know you are all there.
Sharon xxxx

Good luck shazz, hope you can find a solution soon!

You may qualify for Humira if they doubt your UC dx - you don't have to have small bowel involvement to have Crohns, you can have Crohns disease of just the colon (Crohns Colitis) which would make you eligible for Humira (for those not in the UK, Humira hasn't been approved here for those with a definitive UC dx, only Inflixmab/Remicade has). I'm on Humira and I don't even have a fixed Crohns dx - I have 'IBD Unclassified' or 'Indeterminate Colitis' (disease is limited to the colon so it's 'colitis', but can't be sure if it's ulcerative or crohns).

On the plus side if they think it's UC you have, surgery should essentially be curative and your chances of a successful j-pouch surgery would be very high x

Hi Ian,
I have been dx with UC by both biopsy and scope results. I had an MRI in August and that showed up inflamation and scarring in my small bowel/terminal ilieum so hence the whole we think you have Crohns as well.
I have been looking into the surgery options, just in case, and I think whatever the outcome of the colonoscopy on Thursday I will benifit from getting rid of my colon.
I have spoken about it with my husband and we think at the moment that is the best way for me to go. Obviously I willl discuss everything with my gastro team and see what else they come up with, advice and treatment wise.
I have not made this decision lightly and I know even after surgery there will be a long road to recovery.
I mentioned that I was considering surgery to a 'friend' of mine and she came back with oh but I didnt think you were that poorly, you look ok, and I am sure there will be other drugs they can try.
Its not really a case of trying more drugs, not for my UC anyway. I have tried a lot of them and unfortunately I am allergic/intollerant of them or they do absolutely nothing for me. It does frustrate me that people suddenly turn into doctors and are quite free with their 'advice' when its not them that has to deal with the issue at hand. Its easy for someone to say dont have surgery yet, there must be something else they can do. They are not the ones having to live with this bloody disease day in day out.
Sorry for the rant but needed to get that off my chest.
Sharon xxxxx

shazz said:

Hi Ian,
I have been dx with UC by both biopsy and scope results. I had an MRI in August and that showed up inflamation and scarring in my small bowel/terminal ilieum so hence the whole we think you have Crohns as well.
I have been looking into the surgery options, just in case, and I think whatever the outcome of the colonoscopy on Thursday I will benifit from getting rid of my colon.
I have spoken about it with my husband and we think at the moment that is the best way for me to go. Obviously I willl discuss everything with my gastro team and see what else they come up with, advice and treatment wise.
I have not made this decision lightly and I know even after surgery there will be a long road to recovery.
I mentioned that I was considering surgery to a 'friend' of mine and she came back with oh but I didnt think you were that poorly, you look ok, and I am sure there will be other drugs they can try.
Its not really a case of trying more drugs, not for my UC anyway. I have tried a lot of them and unfortunately I am allergic/intollerant of them or they do absolutely nothing for me. It does frustrate me that people suddenly turn into doctors and are quite free with their 'advice' when its not them that has to deal with the issue at hand. Its easy for someone to say dont have surgery yet, there must be something else they can do. They are not the ones having to live with this bloody disease day in day out.
Sorry for the rant but needed to get that off my chest.
Sharon xxxxx

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Don't be sorry. It is soooo frustrating when people start with the preaching when they have no idea what you are going through. We have all been there, particularly with the uber-annoying ''you look ok, how bad can it be'' line. Vent away

Thanks SnowDay,
Most days it just goes over my head and I dont worry about it but I had just had enough.
Admittedly the more ill I am the healthier I look!! I look like I have just been to the spa for the day, all rosy cheeked and everything. But I feel horrid.
I do try to stay positive but you know what its like. There is only so much you can take.
Hope you are doing well.
Sending hugs
Sharon xxxx

Hi Sharon, it is really tough to have to have surgery. I have had two but only resections. Probably because I have crohns. If your colonscopy is bad, it could be the answer for you! I know about being at the end of your rope, since my surgery in 2003 I have never been in remission..I could curse that old fart surgeon, my fault for not realizing a small town general surgeon doesnt know squat about intestine removal. Researching is alway best and it sounds like many people here have really helped you. Glad your joined our crazy crew!

Hi Pen,
Lots of people really have helped me from here and I am really glad I joined the crazy crew!!
Got lots of research to do and some very serious thinking and decision making to do.
Start my bowel prep tomorrow, already not allowed solid food but not hungry anyway.
Will update on results Thursday.
Hope you are ok.
Sharon xxxx

Hi Penny,
I will let you know what is going on as soon as I do.
I go on facebook but not very much. Most of the pople on there dont know aboout my illness.
Sharon xxx

shazz said:

Hi Penny,
I will let you know what is going on as soon as I do.
I go on facebook but not very much. Most of the pople on there dont know aboout my illness.
Sharon xxx

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hya ye ime same i dont mention my illness on there all the best xx

penny said:

hya ye ime same i dont mention my illness on there all the best xx

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ok you take care an speak soon x