My first post, my worst flare and Infliximab (remicade).

Thanks for your responses. It's really kind of you to bother.

I have just been handed salofalk enemas by pharmacy. Bit nervous about using them. I'm used to the predfoam ones - is it a similar process? I have to do the Salofalk one and then the Predfoam after.

Didn't have much luck with the enemas tonight. While I'm flared it's what's to be expected though I guess... They stayed in for a bit.. Oh well, I'll try again tomorrow.

Tips for using enemas:

• When you first start using enemas, use them in the bathroom very close to a toilet as they can come up very quick and unexpected. As you get better at them, and more confident, you can administer them in bed.
  
• Add extra Vaseline (petroleum jelly) to the tip of the enema.
  
• Warm the enema up to body temperature before administering. Put it in a pocket for a while before using, or warm it up under an armpit.
  
• Squeeze all of the air out of the bottle before administering. You do not want to inject any air into your bowel as it will both be uncomfortable and make it likely you will need to urgently evacuate the enema fluid.
  
• Lay an old towel down as any drips of the enema fluid can stain clothing, carpet, etc.
  
• Use one of the positions described in the instructions.
  
• Administer the enema slowly, too quickly and you will be less successful. If you wish, you can do one half the bottle first, wait a few minutes, and then administer the rest.
  
• Stay reclined on your left side for about 20 minutes to allow the enema fluid to be absorbed. Retire for the night.
  
• It takes practice to hold the enema in for 7 hours. Do not get discouraged, and keep trying. Even if you evacuate part of the enema, some will likely remain and heal you. As you heal, it will be easier to retain them for longer lengths of time.

I know you said they tested you for c-diff. Just make sure it was done by PCR. It won't hurt to ask. I was in the hospital recently from flaring badly and becoming dehydrated. Found out I had c-diff, even though I had a negative test one month prior, before going on Remicade (2 infusions, made me worse each time. No way I'm doing anymore of it). The first test in the hospital was negative initially, but needed to be tested further (by PCR). It came back positive when tested again...same sample. False negatives are very possible.

Not trying to insult your intelligence at all. :) The thought just sticks in my brain as I read your thread. I would hope the docs have you covered, but I have been a patient enough times to know things get overlooked. I hope you get answers and things improve. I feel you on how much of a purgatory hospital stays can be, as I'm sure many on this forum do. I was in for 5 days, and couldn't even walk out in the hall because I was on "contact+" precautions. Ugh. Talk about stir crazy....

Well, still in hospital. None of the meds are working as quick as they should. I've been told there's an 80% chance of this happening again in the next 5 years. At 34 I can't love with those odds. I'm married, got a great job, want to have kids and go on holidays... colitis had been a monkey on my back too long already. Plan b! I'm going to try to taper off steroids and get a two step pouch surgery. If the flare gets worse as I taper which knowing my luck it will I'll get a 3 step pouch surgery. The surgeon here is amazing and really wants my case. Does most of it laparoscopically.

Post Edited (This Charming Dan) : 2/7/2015 2:02:18 PM (GMT-7)

If you've made your decision, then I recommend going to the healingwell ostomies forum, j-pouch.org and begin reading about what surgery entails from those who've gone through it. Reading blogs of those who've gone through it may help as well, an example:
ronnielee-fightingforit.blogspot.com/2012/10/surgery.html

I am surprised they said you would definitely need surgery in 5 years. That's a weird thing to say. No one can predict the future. Some people get into 20 year remissions. I don't think surgery is a terrible idea though. Even if the next flare is in 20 years, that will just make life miserable and surgery is harder as we get older...

Yeah, it's just a percentage. Betting odds really. I'm not a betting man but 80% chance of ending up back here in a year or five are odds you look at seriously. I'm 34 and want to be in control of my life. Not 20% of it.

Plus, I've now used all the drugs. I'm on 120mg Azathyropine, Salfalk tablets, salofalk enema, prednisolone enema, 55mg prednisolone tablets and done two infliximab infusions. 3 weeks and still in hospital using the bathroom up 7 - 10 times a day. Bored.

notsosicklygirl said...
You could give entyvio a try. That's the only thing left. If it works, great, if not, surgery is a good option. That's where things stand for me. I want control of my life too. I want to take a cruise or a trip to visit family across the country. I don't want to be captive due to flare ups. 7-10x a day isn't that bad but it's not ideal. You know you're likely to go 6-8x a day with a j-pouch? It's not urgent and you can hold it, no cramps or pain... It's a different, better 6-8x than with UC.

7-10 with urgency and wind is best it's been in ages. It was 20 - 25 of just blood over Christmas. Horrible.

The surgeon here is top dog this side of the country for IBD surgery. He does it mostly laparoscopically and he just did a 3 step on a friend of mine. Seeing him before and after sugery is all the pursuading I need. I can't be more than feet from a toilet right now. I can't live like this. He wants to do my surgery as I'm apparently a good candidate. Being 34, ideal weight and healthy. It's just the steroids he wants me off so he can do a two step. But that might not be up to me in the end. Depends how well I taper.

I've been flared up since October now thanks a to a cellutis infection which I needed IV antibiotics for. They think that's what kicked all this off. It's my first flare. All the others have been mild upset I can control with predfoam.

I've been to Bali, Singapore, Thailand and I want to travel more. I can't with flare threat. I want to go back to work - I love my job and I haven't been able to hold it down since Christmas. There's only so much grand theft auto 5 a guy can play....

Post Edited (This Charming Dan) : 2/9/2015 5:01:14 AM (GMT-7)

This is absolute crap. I'm getting worse again. The bathroom trips are slowly creeping up and I'm on so many drugs. I don't understand why nothing has touched it. I just want them to hurry up and remove my colon. I'm sick of this. Bored out of my mind and running to the toilet all day. I need some release. And some sleep.

No... In the last meeting with the surgery consultant and medical consultant the plan was to taper pred in place for a two step. That's clearly not going to happen and hopefully I set the wheels in motion for a three step today. I said I can't go on like this and want my life back. There's only one surgeon my medical consultant wants doing my surgery so I guess it depends how much of an emergency I am...

Oh yeah... And orange juice = bad idea.