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Posted 9/4/2018 7:35 PM (GMT 0)
What way would everybody rank symptoms in terms of severity. In other words what symptom would indicate that you are in bad shape;
•Frequency
•Blood
•Mucus
•Urgency
•Cramps
•Fatigue

I seem to be hopping from symptom to symptom. As one goes another comes and I can’t tell if I am going forwards backwards or standing still....
Posted 9/4/2018 10:33 PM (GMT 0)
Well for me personally I would order them as follows (most alarming to least):
Blood
Cramps
Urgency
Frequency
Mucus
Fatigue

Fatigue is last on my list because for me the fatigue continues a while after the flare has ceased - in large part because I get very low on iron during a flare and it takes a long time to get it back up where it should be.
Posted 9/4/2018 11:00 PM (GMT 0)
Blood and mucus are the most telling for IBD, because frequency, cramps, or urgency could be the result of IBS or something other than IBD.

To the extent that each symptom is related directly to inflammation, then they should improve as IBD improves. But some UC people have some symptoms even when they are in remission based on inflammation. Do we define IBD as more than inflammation, or do we talk about IBS or GI symptoms secondary to IBD.

some mesalamines treat inflammation, but can also cause some symptoms like D. It sucks to have your med give symptoms. D from a med and D from inflammation both suck. But only D from inflammation means risk of colon cancer.

good luck

Post Edited (DBwithUC) : 9/5/2018 8:07:02 AM (GMT-6)

Posted 9/5/2018 11:52 AM (GMT 0)
I always get most worried about Blood I suppose as its the most alarming.

Currently I have ~5 BM daily, some D, some soft formed stools, some mucus, some blood, some urgency.

I am on;
- 50mg of Imuran - started back on this 2 weeks ago.
- 15mg Pred (tapering 5mg weekly)
- Remicade infusions every 5 weeks
- 3.2grm Asacol daily


I had a fecal calprotectin reading of 2024 just over two weeks ago so I am hoping going back on the imuran will start to bring that down.
Posted 9/5/2018 12:57 PM (GMT 0)
Frankly, they all suck!

I question the utility of your list. Mild flares often have one of those symptoms, severe flares hits all of them with a great enthusiasm. Even one stinks, never mind all of them at once.

Tenesmus (repeat feeling of having to urgently poop, and passing nothing or at most tiny bits) takes the real crown of mount crapula that is flares, and it's totally missing from your list ;-). That's the one that drives me completely bonkers during flares. Tenesmus, urgency, and frequency are the worst especially when combined and are all suggestive of severe inflammation (how's 25+ bms a day, less than a minute's time to get to the bathroom, mix and repeat every 30-ish minutes...ugh). Minor inflammation is Blood, Mucus, and Cramps, and I can take those all day without batting an eye!
Posted 9/5/2018 3:20 PM (GMT 0)
I’ve been there iPoop, nothing worse. Tenesmus is very frustrating, annoying, even heart breaking.

I was at that stage in April/May this year and with a mix of 2 hospital visits and introducing all the above drugs I managed to get to what I thought was close to remission. However now I seem to have gone backwards. I can still function day to day and actually have quite a bit of energy (probably the Pred mixed with coffee). But my fear is that I am not heading to full remission. I understand this may take time but like everything in this society I want results yesterday 😂
I do appreciate and realise I am in a much better place then a lot of people on this forum but I guess I miss my reality of pre UC, that’s all. Trying to find a new normal these days....
Posted 9/5/2018 3:47 PM (GMT 0)
WHile on pred, there can be no consideration of remission. Remission can only be judged pred-free.

That you are tapering pred and going backwards is sooo indicative that you are not near remission

sorry
Posted 9/5/2018 4:25 PM (GMT 0)
I had been Pred free for about a month mid summer, 2/3 BM a day. No blood, no mucus, no urgency, no cramping. I was taken off imuran and within about 3 weeks I was put on 30mg of Pred as I became symptomatic. To be honest I don’t think the Pred has any effect other than give me a bit more energy, my symptoms remained the same. I have since been put back on 50mg of Imuran and I am hoping this will again start to work in time as I taper off Pred. I have been back on the imuran 2 weeks so hopefully in the next 3/4 weeks it will kick in again. It is the one thing I felt really worked for me.
Posted 9/5/2018 5:08 PM (GMT 0)
UC always likes to keep us guessing. Loves to make us think we're stable for a few months then *wham* surprise you're back in flaresville again kicking and screaming. There is a a solution, it will take time and far more than you or I want it to. I hear you about wanting it yesterday lol, and wholeheartedly agree with that sentiment ;-).

Have you considered adding back in mesalamine enemas (a.k.a rowasa/pentasa/salofalk enemas)? The bulk of our troubles comes from the rectum and is the most severe there...
Posted 9/5/2018 5:26 PM (GMT 0)
Yes I definitely have. I was only onto my go nurse today and meant to ask for a prescription. I will call again to organise one. The guessing is the hardest part iPoop. I think I have the ability to deal with most things that are placed in front of me once they are real, tangible and there is a definite strategy that will work. With UC it’s very much the opposite 😂

I am awaiting a supplement protocol based on a full stool analysis I have had done by a clinical nutritionist and I will continue to follow the medical protocol given to me by my GI. I am determined to beat this
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