How bad can it get?

I don't understand. If your flares are that severe why haven't you had your colon removed yet? I've had 2 severe pancolitis flares and had to have my colon removed. Why do you still have yours? I'd think if it was as bad as the GI thinks it is he would want you have surgery.

With flares that severe, it kinda sounds like you're on a one-way path towards surgery. I'm surprised you pull out of them.

My Crohn's was one long, continuous flare up for 13 years, which gradually got worse and worse. I had pancolitis with terminal ileum involvement. No fistulas. It started off very mild and stayed pretty mild for about 5 years. Then I fell ill with brutal fevers. Like, really brutal: I'd be lying in front of a heater with two sweaters on and still shivering violently.

Eventually the brutal fevers passed after a few weeks or months, but I was never the same afterwards - my baseline had got worse. And over the following years my baseline continue to get worse. I'd be semi-stable for a year or two, the brutal fevers would come back for a few weeks, semi-stable again for a while, etc. I was systemically ill in a way that I wasn't in the early years, e.g. severe anaemia, fatigue, fevers (I still got low-grade fevers in between the periods of high fevers).

I did lose weight, but gradually rather than dramatically. During really bad periods, I craved cold drinks and so probably kept up my calories through fruit juices and milkshakes. I did end up really underweight, but it happened over a period of 3 years or so.

I was never in remission, no matter what meds I went on. Took a course of pred about once a year on average. That would make me feel better for a while, but the symptoms would quickly come back.

In 2011 the sh!t really hit the fan and I developed toxic megacolon. Ended up in hospital for nearly 2 weeks; the hospital fumbled the ball at first by thinking I had gastroenteritis (lol, as if I'd go to A&E for a bout of food poisoning). My CRP was 350. My temperature the night before I was admitted was 40.5C. (It had gone down by the next day; it was spiking very high at night and that was the highest point it reached.)

I've never been the type to have 30 BMs a day - I think around 15 a day has been my maximum, no matter how ill I've been.

Oh yeah, and the 9/10 abdominal pain, which led me back to A&E at least 5 more times. Excruciating and unbearable. And always accompanied by fevers and feeling extremely ill. IV steroids and morphine would pick me up, I'd do okay on oral pred for a couple of months; relapse and end up back in hospital. After about 18 months of that cycle I booked surgery. I was never getting into remission; the only 'remission' I was experiencing was a completely false, steroid-induced, one.

I don't hear of many people with IBD having bad fevers. I used to sometimes wonder if I had a hidden infection or abscess, but nothing was found over the 7 or 8 years I was having them for and eventually I just put it down to the Crohn's and having a toxic colon, since there seemed to be no other cause.

I also had a stricture which made life interesting at times with partial obstructions.

Hope you don't mind hearing from somebody with Crohn's, but I guess I felt like talking about it :-/

PS: My surgeon wanted to do surgery the very first time I was admitted, but apparently my GI talked her out of it, wanting to give the Remicade more time to work (it never did).

I have had ulcerative colitis ("pancolitis") for two years now and when I flared, I had 10 to 15 BMs per day, joint pain, fever, lost lot of weight, etc. (Currently, I am tapering off prednisone) I know one person with UC who treats any flares with just acupuncture (He mentioned it is for pain reduction) and he takes a lot of probiotics. But, the acupuncture treatment does not clearly sound that scientific to me. And, personally, no amount of acupuncture could measure up to the effect of prednisone or a biologic on UC. Just a quick datapoint about me to you regarding how bad UC is for me.

I was always afraid of staying with having a lot of BMs per day as a result of not treating UC fully (considering the increased risk of colorectal cancer) But maybe, I am just a bit paranoid about these things.

I pray that you regain good health and that you are pain-free!

God Bless!
Ray

Connor77 said...
i have legal documents preventing them from doing it. I am extremely stubborn and I believe that my condition is caused by infections. If they take out my bowel the infection will just move elsewhere, or cause pouchitis. No thank you.

You know what's going to eventually happen right? You're going to get a preforation and die of sepsis, or get colon cancer and possibly die. There is absolutely nothing wrong with surgery. Or pouchitis. They aren't comparable to the suffering that is a severe UC flare.

How are we supposed to react to this? I feel like most people here are trying to do various things to get better and to beat the disease to have a semi-normal life.

But it sounds like you are bragging about your suffering? You even admit that you are stubborn and know what the answer is...

We can't help you if you don't want to help yourself...

20+ BMs a day and throughout the night. 2 or 3 blood transfusions for a hemoglobin below 7. Dropped from 165 lbs to 130 lbs.

Surgery happened as it was the only solution. And per your responses quite frankly I can't feel bad for you. Surgery isn't all that bad, and you sound like you desperately need it. I got my life back, am enjoying life much more. If you want to continue wasting years, money and taxing people that need to help you for when you "can't get out of bed" then be my guest but I wouldn't ask for sympathy.

Good luck.

RISEagainst said...
You know what's going to eventually happen right? You're going to get a preforation and die of sepsis, or get colon cancer and possibly die. There is absolutely nothing wrong with surgery. Or pouchitis. They aren't comparable to the suffering that is a severe UC flare.

Why would you seriously say that to anybody, let alone someone on this forum who is going through the same illness you are??!! In what universe do you think that is supposed to be helpful, try and be a bit more sensitive to the struggles that other people are going through, it doesn't cost anything to not be a jerk

RISEAGAINST said...
When someone comes on here to brag about their illness and claim they've refused the proper medical treatments they need a reality check. I'm not sorry for speaking the truth. I'm sure as heck am not gonna pat him on his back for his "bravery" and perseverance for surviving the worst UC flares known to man.

What a weird interpretation of his post. He's just trying to gauge his disease severity vs. other people. I don't see any bragging going on. We all, at some point, explain our disease severity and symptoms on this forum and look for advice. That's kind of the whole point.

How bad does mine get??? Chronic degrees of a flare for over 4 years....maybe 5. The worst was going 40+ times a day and vomitting at the same time. A nurse had to pick me up from the bathroom floor. The pain was so bad I was crying and screaming to my family that I wanted to die.

What saved me (as usual) is IVIG. Within 24 hours I went from 40 times to 17.....a week later I was going 4-6 times a day. Last year I developed fistulas and my disease changed from UC to CD. Humira/IVIG and now Stelara have helped my bowel. Up until Monday I was going normally 1-3 times a day. All formed. Now I'm regressing possibly due to all the new foods I was excited to try. OR the IVIG has destroyed the Stelara.

Connor---are you in TO/GTA?

Post Edited (U B Tough) : 10/5/2017 8:37:58 AM (GMT-6)

dinkydonuts said...
How are we supposed to react to this? I feel like most people here are trying to do various things to get better and to beat the disease to have a semi-normal life.

But it sounds like you are bragging about your suffering? You even admit that you are stubborn and know what the answer is...

We can't help you if you don't want to help yourself...

maybe you could just try to answer the OP's question - otherwise, shut it -

you wanna judge somebody, get a tv show -

Connor,

Correct me if I missed something but you're not using Biologicals?

Again, I'll warn you about the risks involved with long term steroid use. I needed my hip replaced because of steroids.

Maybe UBT can write some about her MAP protocol experience.

RISEagainst said...

WorriedUCer said...

RISEagainst said...
You know what's going to eventually happen right? You're going to get a preforation and die of sepsis, or get colon cancer and possibly die. There is absolutely nothing wrong with surgery. Or pouchitis. They aren't comparable to the suffering that is a severe UC flare.

Why would you seriously say that to anybody, let alone someone on this forum who is going through the same illness you are??!! In what universe do you think that is supposed to be helpful, try and be a bit more sensitive to the struggles that other people are going through, it doesn't cost anything to not be a jerk

Au contraire. There are a few other people in this thread who aren't being sympathetic to him either. It's just easier for you to single me out though because I'm new. I'm not sorry if this kid needs to hear the reality. We should be honest with people on here instead of enabling them. Clearly this kid needs surgery. It's harmful to him to encourage him.

We were asked for worst case scenarios. I got septic shock from UC meds + bacteria, and it truly can happen from a perforation, or just from having a compromised immune system, and it is terrible. You may not die though, you can pull through, I pulled through even though multiple organs had shut down.

Calling someone a jerk because you do not agree with them is unacceptable.