What is a Flare-up or Remission

How would you describe a true flare-up or remission?

I am currently floating between both of them in a sort of limbo...

I have 10 BM a day with no blood but lots of urgency - would that be described as a flare or mild remission?

My doctor has been banging-on about surgery, but I swear I don't feel that bad?

G

10 a day is considered a flare. Ideally, remission is 1-3 bm's a day with no urgency, blood, D - basically not having any Uc symptoms. The main problem if you are having D and going that many times a day is that you run the risk of dehydration even if you're feeling good. Are your bm's solid or D?

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Definitely loose diarrhea with moderate cramping.

Could these be the symptoms that warrant going into surgery...

I have tried mostly all medications from 5-ASA's, immunosuppressants to biologics like Remicade and the Adacolumn.

G

I guess my next question is - do you take probiotics or fiber.  That certainly should help, I woudl think.  If you honestly have tried EVERYTHING - surgery can be a cure and maybe what you should consider.

ElaineNY

I have tried Probiotics of all kind - everything from VSL#3, Culturelle, Acidophilus and Ecoli Nissle with no real effect.

As for fibre, I know for sure that Psyllium Husk gives me a laxative effect and dietary fibre just increases my output further...

G

Steroids?  I sure hope I never need them but they certainly have helped a lot here on the forum.  BUT - I never had more than say 5 BM's a day but I do have bleeding in rectum now.  How extensive does your colonoscopy show your UC is?  Maybe you also have IBS or digestive problem?

ElaineNY

Colonoscopy results show Pancolitis with severe inflammation all the way round.

As for steroids, I have used them extensively over the past 8 years and have noticed that they don't seem to work as well as they used to.

G

I would personally describe your symptoms as a flare and would go in for surgery. I'm currently having no blood but a lot of mucous and approx. 5 BM's per day, and I'm not considering that remission.

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Female, Age 20

Gargamel....if you have exhausted all the testing to prove that you don't have anything else going on in your colon (invaders), meds aren't working and your quality of life is declining, I'd suggest surgery.

I personally don't think it's good for one to live with a diseased organ that's distressing the body having it in constant defensive mode.

I, if I were in your position, would have it as the next option.

quincy

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Thankfully Azathioprine keeps me in remission.But if I were in your position,having exhausted all those med options,and having that many BM's,especially with urgency,I'd be going in for a J-Pouch.I've been on the verge of it several times anyway,but as I say,in your position,it would be a definite.Of course,you may feel entirely differently,but that's my two pennies.

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Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;200mg Azathioprine daily.Pentasa 2 x 500mg 4 x daily.
Got Ryche?

I've actually had two GI Doctors say surgery is my next option and I've seen a Surgeon who has also said that I am a good candidate for a Laproscopic Colectomy and J-Pouch.

I also have an appointment to see the same Surgeon this Tuesday to answer some of my questions regarding a possible surgery.

One of my main questions is going to be how long a J-Pouch will last and if it doesn't what other option will I have?
A permenant stoma is the last thing I need...

G

Since the jpouch is made with your own living tissue, small intestine, it will last your lifetime.  However, since the surgery is relatively new there are no long term statistics on this.  I do know people with jpouches that are 25+ years old and they are doing fine.

Sue

Have you explored the Aloe meds? I just started reading about it in regards to UC. Some folks who have UC said it works. I just don't know too much about it.

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Have you attempted trying Humira? Have the Doctors suggested this drug to you? My doctor has told me that this is the last option for me that is. I'm on it and have been on it for a year and a half. I'm doing wonderful with it.

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26 year old, Married, Female.

Or even Remicade? And 10/day with lots of urgency is most definitely a flare, blood is not the only indicator of a flare, other symptoms can be present without blood in order to be flaring and most docs would describe your colon as looking like hamburger and wanting to remove it when it's to that degree, but if Humira or Remicade have not been tried and your docs are pushing for surgery and your colon doesn't resemble hamburger then they might be jumping the gun...ultimately though the choice is yours.

:)

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My bum is broken....there's a big crack down the middle of it! LOL :)

I have tried Remicade last year. I had 8 infusions with no effect.

As for Humira, I don't think its available to Ulcerative Colitis patients in the UK and as far as I've read, people who don't respond to Remicade usually don't respond to Humira either.

I was also offer a drug called Cyclosporine recently, but I flatly turn that down because of its safety profile.

G

I was on Remicade before Humira. Had horrible problems with the Remicade practically went into anaphalactic shock. Switched to Humira I went into remission. Sad to hear there are limited drugs in UK. Hopefully this gives u some hope or ideas.

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26 year old, Married, Female.

If I may ask, what part of cyclosporine's safety profile made you deny it? I thought Remicade and cyclosporine had dangers/side effects of a similar level.

As far as I can remember my IBD nurse did mention that Cyclosporine can cause kidney failure.

Has anyone ever tried Cyclosporine and could it be used as long term drug?

I thought Cyclosporine was only used to delay surgery until a severely ill patient was strong enough to go for a Colectomy.

G

that's how it was explained to me too- that it gets you healthy enough to undergo surgery! But there is a poster on here who has had it twice, & not gone in for surgery. It is not for long-term use, but I think some people continue to take it orally after they are discharged from the hospital, where it's administered intravenously. It is dangerous- hence the need for hospitalization while getting the drug. The providers need to be able to check labs constantly, & have you right there in case anything should go awry. I don't think it's any more dangerous than Remicade, though- while they both have some pretty scary potential side effects, these are rare occurences. If you speak with a colo-rectal surgeon, they may want to stabilize you before they do any surgery on you.