Severe UC and Remicade

[QueenGothel]

Hi there, I am mom to Rowan Dx Severe Ulcerative Colitis Oct 2011. She had a horrible flare recently was in the hospital for 34 days. It was horrible. Now she is on Remicade and it started working that night it was a Wednesday. Her flare was so bad, they planned to remove her colon on Monday if she didn't get better. They hit her with her second dose of 10 three days later on Saturday. It is now a week later. She is having a lot of pain and watery diarrhea 6x already today. No blood yet this just stopped two days ago. She is a bleeder 3 transfusions in her last hospital stay.

My questions to you all. Anyone else have severe bleeding on Remicade? Did it keep you from bleeding in between treatments? The pain is horrible b4 and during her BMs. I am scared to death that we will end up back at the hospital. Her next infusion is not until March 5th. Does anyone get better meds for the pain besides Tylenol? Should I keep giving her the Tylenol when she says her belly hurts? I have a call into the GI again. They will tell me just to watch her fevers.

Anyone given flagyl to help without going into see GI. It is the weekend. So no appointments.

 

[SdN]

I've been taking Remicade since March of last year, 7 infusions total and my 8th tomorrow. When I was at the 5mg/kg dose I was still having lots of problems, between 5-10 bowel movements a day and frequent blood. After a 4 month course of prednisone (which was horrible) and a subsequent increase in my Remicade dose to 7.5mg/kg I'm now symptom free and have been for somewhere around 3 months however I've been having chronic hive problems for the last 2 months but that's another issue... I'm not a doctor but I do not believe you should see bleeding while taking Remicade. If you are I would definitely talk to your doctor. Bleeding indicates active inflammation/ulceration which is not remission.

 

[QueenGothel]

I guess my question is more are there still tnf blockers still working in her now? Or is it just after time of infusion? I think she has a blockage and we are treating with miralax now. Saws some hard chunks pass through. Just worried the diarrhea will start a flare again.

 

[SdN]

I think the tnf blockers stay with you and aren't 'used up' right away.

 

[Miss Underestimated]

TNF blockers don't just "wear off" like a pill does. It blocks the little things that cause inflammation, so first you have it blocking, but the inflammation still has to heal up, depending on how bad the existing damage is.

However, if her bleeding scares you, don't feel like a dummy for calling your doctor, or going to the ER. I think doctors who take pediatric cases do it because they want to help you, so call if you get scared.

Hugs

 

[QueenGothel]

I called. The hard old stool broke loose last night. She is feeling much better today. The GI also explained what you just told me. Simethicone in small doses is helping too. Glad I haven't saw any blood. Her last 3 flares have all ended in hospital stays so I guess I am paranoid. She for sure had a blockage. The miralax really did the trick along with the aloe Vera. She must have a narrowing. So going to keep giving it until the remi starts healing more. Thanks all.

 

[SarahAnne]

So glad to hear the miralax is helping. Stick with it, depending on severity of disease, it may take a few infusions for it to make an impact.

 

[Miss Underestimated]

Be careful using aloe vera - it's an irritant, and it could cause more pain and bleeding.

 

[QueenGothel]

She seems better but I think there is still more in there. More yellowish stool still passing. The GI doctor told me the aloe Vera was ok. I never have heard of it being an irritant. Is this your personal experience or something you read? Just courious.

 

[Miss Underestimated]

Both - personal experience and I've read it. I'm aware that there are people who swear by it, but that was not my experience. I think David has some info posted on here about the fact that it is an irritant.

 

[QueenGothel]

Thanks I will stick with the miralax then. It was given to me by a homeopathic doctor as a gentle laxative. I am not taking any chances. I found what you read on here. Even though it says I am a senior member am really a newbie. lol

 

[QueenGothel]

Well the poo is now the consistency of apple sauce so hopefully we can keep it that way.:applause:

 

[Miss Underestimated]

Yayyyyyyyyyyy!!