How long is long enough?

Hello,

I am very new to this forum and I must say it has been a great place to find for me. For the past two years since being diagnosed with UC i have been living with a ton of questions and doubts regarding my health. Luckily by reading others stories it has made me put my condition in perspective and be thankful for what I have available to me such as health insurance. I wanted to hear from other members on length of flares. How long in between flares before you started to get better. I was able to stay in remission for about a year and now I am going on four months on this flare that is kicking my ***. Should I be worried? My doc wants to pull out the scalpel and surgical gloves on me and I am not ready.


Diagnosed with UC 4/01/2011
Currently on Asacol 400MG EC Tablets 4x3 daily, Azathioprine 50MG 2 times daily, Methylprednisone 8mg a day and currently tapering, 1 dose of Humira every two weeks on week four. Started gluten free diet on 1/15/13

How bad is your flare? Do you have a lot of cramping? Any suggestions on what helps you get through the day?

Thanks

it really varies for everyone on here you will come to see that we all have very different experiences with flares and treatments.

In my case, flare 1 year, 3 years remission (Full Remission - other than the meds i had to take each day- i felt like maybe i was wrongly diagnosed!). Then flare for another full year, remission for 1 1/2 years. Now just getting over a 4 month flare and hoping this remission sticks for a very long time.

Within a flare symptoms can also very from severly sick to just frustrating long lasting minor symptoms such as blood or mucus...

Hope you can find helpful info on this forum and more importantly keep your HOPE that there will be good days again down the line.

Haha (nelson's laugh in the simpsons)

Stereo takes girls stuff "Wise Woman Supps#2"

*points and laughs*

lol

Somedude said...
Haha (nelson's laugh in the simpsons)


Stereo takes girls stuff "Wise Woman Supps#2"

*points and laughs*

lol

DAMm YOU!

Welcome!

I'm sorry you're in the middle of such a long flare! I was wondering if your doctor had tried other treatments to get your UC under control...it scares me that the doctor just wants to go in for surgery. Is it an especially bad flare? I know for my first flare, the doctor was considering removing my entire colon because I wasn't responding to medications and I was extremely ill. I was actually hospitalized at the time. Thankfully, I started responding, so I was able to avoid the knife. Importantly, if you're not ready, let your doctor know that you want to try other things before you make this big decision.

Sabinasan said...
Welcome!

I'm sorry you're in the middle of such a long flare! I was wondering if your doctor had tried other treatments to get your UC under control...it scares me that the doctor just wants to go in for surgery. Is it an especially bad flare? I know for my first flare, the doctor was considering removing my entire colon because I wasn't responding to medications and I was extremely ill. I was actually hospitalized at the time. Thankfully, I started responding, so I was able to avoid the knife. Importantly, if you're not ready, let your doctor know that you want to try other things before you make this big decision.

Pretty much my Doc is telling me that Humira is the last line of defense in regards to meds and that after that its the knife or bust. She is telling me that food may trigger flares but that really UC has very little to do with diet. She wants me to get another c-scop done soon to see how its going however I just had one in November that didn't look good (whatever that means) I guess very active still. My doctor does understand that I am not ready for the knife and tells me that I am in the driver seat however her lack of faith of my condition improving makes me scared. I have never been hospitalized for a flare ever or even when I was first diagnosed. However by reading on this forum I have found out that IV antibiotics and me quitting smoking could have been the culprit to this bloody crap.

what are your symptoms? other than frequency?
sounds like you are still working.. that is good.
have you tried any steroids?
sounds like still lots of options before surgury especially if you are not keen on surgery.
have your symptoms changed, increased, decreased since first diagnosed?

it is a puzzling disease and unfortunatly is it usually more up to you to put the pieces together than you doctor..

Has anyone here during a flare have terrible cramping and other stomach pains that were not normal cramping pain? (Does that sentence even make sense). Also, has anyone here during a flare not been a me to go to the bathroom at all but you feel like you have to? Thank you all for sharing

Yep-feeling like you have to go all the time and not being able to is the inflammation. It is "normal" for a flare--or at least for my flares. I don't usually get stomach cramps, but my inflammation is only in the last 45 cm. I know that a lot of people on here do have cramps and have to take something for pain. I hope you feel better soon. I just started Humira too. I hope it helps.

     Suffered all of the above and then some.  Question.....are you seeing a GI doctor or colorectal surgeon to treat your UC?  During the twelve years I suffered with UP (proctitis), I was treated by a GI doctor and he NEVER suggested surgery.  Even when I told HIM I was opting for surgery, he became upset.  After 6MP (seven years and never kept me in a long term remission), Remicade (failed after third infusion) and Humira (after three months, no change in condition) and becoming prednisone dependent for the last two years I suffered, my GI doctor STILL wanted me to try more and more drugs.

     You sort of know, instinctively, when enough is enough with the meds.  Surgery is usually a last resort.  No one wants to lose a major organ, but, when that major organ is so diseased that the rest of your body starts to deteriorate, then it is time for it to go.