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Surgery is looming

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Ulcerative Colitis
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Posted 6/11/2015 7:07 AM (GMT 0)
Well back in hospital yesterday after having a flexi sig and seeing that my colitis is now severe.

First dose of infliximab given yesterday late afternoon and thought I started to feel better. However still no change to my BM still bloody and painful and they are now saying that if there is no change in the next 48 hours and then the next thing is surgery. The surgeon is coming to talk to me today. So I guess I better start thinking about at the age of 33 years old, there is a good chance I will be having my colon removed. This time last month I was enjoying a full remission.

I am very very scared right now. Please any of you with good successful surgery stories please do let me know. I need your strength and support right now guys.
Posted 6/11/2015 9:38 AM (GMT 0)
Hey happy chick I know this is probably overwhelming but I think they may be jumping the gun
Unless you have are developing a megacolon I'm not sure why they are rushing so fast into surgery
They should give the remicade 3-5 days
Also it takes a lot of people 3 infusions until they see concrete results
Has the remicade brought down your crp at all? What about pain? Reduced blood at all? These are things I would look at in the next couple of days
Talking to a surgeon doesn't necessarily mean you need to have surgery
But you can also request a second opinion from a different GI
I am not sure what hospital you are in but If there are any special GI hospitals in your area I would consider transferring
When I was originally hospitalized I was in a hospital very close to home that was not geared for iBD and they nearly cost me my colon
Transferring to a hospital with a very big GI team really helped me

But if you trust your doctor than stay with him
Keep posting updates
We care
Posted 6/11/2015 10:05 AM (GMT 0)
Are you in the UK? If so NICE protocol is infliximab then Humira. Infliximab did nothing for me ... But they did give it a few months after stabilising with IV pred ... Humira isn't a wonder drug for me but is keeping me out of hospital... So does for now.

Worth giving both a shot is you've the chance. Hopefully the surgery talk is about what might be, and is basically getting this in your mind for you to contemplate, rather than what will be. I'm sure they won't rush you ... Good luck.
Posted 6/11/2015 11:04 AM (GMT 0)
Hang in there Happychick. I would echo Dikid's comments - there is still time for the Infliximab to work, it can take a few days to kick in. I know the thought of surgery is scary but you are not there yet and others have said talking with a surgeon does not mean you have to commit to going under the knife. You are in the right place, and fingers crossed they can get you sorted out and back to good health as soon as possible.
Posted 6/11/2015 11:20 AM (GMT 0)
that sucks !

i agree, it's seems like talk of the knife is a little premature -

hang in there !
Posted 6/11/2015 1:28 PM (GMT 0)
I have 14 years with a jpouch and life has never been better! I engage in long distance, 200 mile, international thru hikes, backpack, work full time, and eat whatever I want. No regrets here. The road to recovery is long and comes in small steps, but for me it was worth it.

Sue
Posted 6/11/2015 1:32 PM (GMT 0)
Hey Happychick, surgery was the best thing that could have happened to me. My whole story is in my blog (link in signature) but in summary: I have 5-6 BM per day, no urgency or leakage, no more butt burn, no abdominal pain. I eat well and I exercise (a LOT, I'm a gym rat!). I'm starting medical school in August and my pouch really doesn't hold me back from doing anything the way that UC always did.
Posted 6/11/2015 2:15 PM (GMT 0)
My CRP has shot up to 96! So this is now not looking good. Starting to think about surgery or should I wait and see if the remicade does anything???
Posted 6/11/2015 2:33 PM (GMT 0)
Unless your life is in imminent danger maybe you should at least give the drugs some time to work before surgery. Not saying you shouldn't do it, but once you do there's no going back. It's probably at least worth it to get a 2nd opinion from a different doctor/hospital. Again, unless your life is in imminent danger.

Wishing you the best and hoping you feel better soon
Posted 6/11/2015 2:40 PM (GMT 0)
I'd give remicade more time if you're hesitant about surgery. You need to go through the "loading" phase for remicade to get it built up in your system. It's not intended to work immediately after one dose. I can't remember the schedule of loading phase, I thought it was week 0, then week 2, then week 4. It needs to build up.
Posted 6/11/2015 2:41 PM (GMT 0)
I am right there with you. I feel like I keep trying drugs and I get a few months break here and there, but overall, I haven't had any medication work to keep my UC in remission for a long period of time. It's been a constant struggle. Surgery is not easy and it's scary but it's the best shot I've got. I am sick of wondering whether I will be well enough to do things. I am sick of missing out on life. Everything i do is compromised. You should give it some more time, but just remember, whatever you decide, it will be okay. Life will be different but for most, it's way better then life with active UC. You will be able to do things with your child, travel and experience life without worrying about flare ups all the time. You will not need to take 10 pills a day. It could be very liberating.
Posted 6/11/2015 2:48 PM (GMT 0)
my sister had the surgery 22 years ago and she hasn't seen a doctor since or taken one medication for it. I recently had a consultation with her surgeon to do my j-pouch. She had no choice for the surgery, she was so sick the disease made the decision for her. The surgeon said her colon fell apart in his hands it was so ulcerated. She's very happy, yes she does go to the bathroom a few times a day but she can control it all.
Posted 6/11/2015 3:50 PM (GMT 0)
I don't know what to do. I think I know it's inevitable but it's just such a drastic decision. I mean even with this bad flare I am going to the toilet only twice to three times a day and I will be going more than that without a colon. But my colon is badly inflamed and is getting to the point where they do not want to leave me too long with it being so inflamed with no relief due to the risk of rupture or any other complications.

They have decided to give me a couple of days of IV steroids again to see if that gets my CRP down which is did last time. And by the one I get off it, the Inflixmab might kick in. I don't know anymore. If that don't work, then will consider surgery. Maybe that is my destiny to have a more fulfilling life.
Posted 6/11/2015 3:56 PM (GMT 0)
If you're only going 2x a day, that doesn't sound like too terrible of a flare up. I know some people have UC with constipation so maybe tha'ts what you're dealing with? Though, if you're on steroids, and you're not improving, that's never a good sign. Try to take it easy and hopefully things will subside. I don't think CRP is the end all be all of inflammation. I've had mine normal and been in an active flare up.
Posted 6/11/2015 4:01 PM (GMT 0)
Agree with nssg. Take your time, Happychick. Thing always seem much worse in the middle of a flare. For now just rest and try to recover...it will settle down.

Good luck
Posted 6/11/2015 4:32 PM (GMT 0)
How do you feel between BMs? If you are only going 2-3x/day that doesn't sound like it's a reason for surgery even with blood & pain. Just seems to me like they need to give the biologics more time to work rather than just a few days before rushing into surgery. Are you on rectal meds? From what people have said here it can take a few weeks or even more to see improvements from remicade, but then they have had remission for years. We're not docs though so maybe they are seeing something we are not.
Posted 6/11/2015 4:48 PM (GMT 0)
There are some new studies ( I'm not sure but possibly university of Michigan - I was very sick when I spoke to a doctor about this so I don't remember all of the details)
Anyways it's about giving extra loading doses so instead of doing weeks 0,2,6 doing a fourth loading dose so it would be weeks 1,2,4,6
That is if they see improvement with remicade
And it's possible that because you are only having a few BMs a day it is causing your flare to be worse because the toxins are stuck in your gut
i hope you see improvements with the remicade and you feel much better
But if you do opt with surgery it will be the end of UC
Which eill be really nice
Posted 6/11/2015 5:22 PM (GMT 0)
The same thing happened to me while I was hospitalized. If you're not ready for surgery at this moment in time you don't have to consent. They were able to stabilize me with IV prednisone. Eventually I did end up having surgery but it was about two years later. I'm doing very well with my j pouch now. Best of luck.
Posted 6/11/2015 6:02 PM (GMT 0)
Those of you that have had a j pouch- have any of you tried to conceive or conceived with one?? I've been told it will be difficult
Posted 6/11/2015 6:11 PM (GMT 0)
when the surgeons visit you in the hospital, they act like you are gonna die if you don't get your colon out. i've been through that 100x and i still have my colon even though it's "the worst colon they've ever seen." yeah, yeah, i'm sure it is.

if you can stay on prednisone and be stabilized and have MANAGEABLE symptoms, i'd wait and see if remicade works.

if you aren't stabilized on prednisone and remicade isn't working, then i'd get your colon out.
Posted 6/11/2015 8:04 PM (GMT 0)

Happychick said...
Those of you that have had a j pouch- have any of you tried to conceive or conceived with one?? I've been told it will be difficult

I had my j pouch surgery after I already had my two kids. I would have loved to have had a third but I was already 42 by the time I was all recovered and I felt that it was too late. Freakin UC stole so much time from me. Anyway, it is known that it can be difficult to conceive mainly due to scar tissue. Having the procedure done laparoscopically cuts down on scar tissue a lot so that would help. There are babies born every day to j pouchers. Visit jpouch.org in the women's health and pregnancy forum to do some reading.
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