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permanent fatigue?

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Ulcerative Colitis
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Posted 8/30/2016 10:10 AM (GMT 0)
Hello fellow sufferers

I have been on azathiorpine for 7 months and my colon feels better than it has felt in about the last 7 years! This is what real remission feels like. However, the only thing that I'm struggling with is fatigue. The IBD nurse says it's down to the disease and that even in remission, you can get bad fatigue. I've read that it can be permanent - does anyone know whether this is the case. I was hospitalised at Xmas for 8 days and had a dreadful time for months before that but can I still get the fatigue so long after the attack? Will it ever go or diminish?

Any thoughts or experiences?

Wishing everyone well….

Cath from Brighton, UK
Posted 8/30/2016 11:17 AM (GMT 0)
unfortunately, what i believe is that until the underlying cause of UC is identified and eradicated, your body will be affected - the drugs are only controlling UC, not getting rid of it - your body is still trying to fight for it's life, the drugs are just helping -
Posted 8/30/2016 12:40 PM (GMT 0)
Fatigue and joint pains are the most common extra-intestinal complaints with UC patients. There are a number of posters, like yourself, who experience it. Descriptions of UC list fatigue as a consequence of having UC, even for those who are not currently on any UC medications. Fatigue is listed as a potential side effect of all of the various classes of UC medications all of which use very different mechanisms of action. I've seen a number of fatigue + Imuran posts, so it's possible that medication might have a higher incidence of it.

Fatigue can be caused by low iron levels within your body (aka anemia), by low vitamin B-12 levels both are common with UC patients, and you can get a blood test to see whether you are out of range, or at least close to it. You can adjust your diet accordingly, to increase your iron and B-12 consumption, and depending on how low your levels are can get infusions or add supplements to help boost your levels back into normal range.
Posted 8/30/2016 2:42 PM (GMT 0)
6mp gave me great fatigue so it could be a combination of UC and meds.

Have you tried drinking veggie juice? Before investing in a juicer go to your local health food store or juice bar and try a small size. I always found it gave me great energy. When I make juice at home (kale and carrot usually) I make a lot and turn it into ice cubes that I pack in plastic bags after frozen. Just pull out a couple cubes every morning, let melt and add some water. Some people like to add apple or pineapple juice but my gut will not agree to fruit (I wish).

I also buy organic carrot juice in the cooler in the vegetable section at my grocery store and do the same (freeze) because I cannot ever finish a bottle quickly. Don't overdo the juice, it has lots of vitamins but can cause D if you splurge.

Bone broth from beef and chicken bones is also an energy charge for me and good for colon too.
Good luck.
Posted 8/30/2016 3:24 PM (GMT 0)
My husband suffered extreme fatigue while on 6MP and trying out various biologics (remicade, humira, and entyvio). He is in remission now on Xeljanz, and no longer taking 6MP. Extreme fatigue went away. Don't know whether it was attributable to other meds or UC being in remission.
Posted 8/30/2016 3:29 PM (GMT 0)
I've always had fatigue, even before dealing with UC. I had surgery for my UC and I still suffer from quite a bit of fatigue. Not as bad as it was while flaring, but I don't have a ton of energy. I have to wonder if some people are just programmed to be lower energy? It's weird to go from being an energetic person to being a non-energetic person, but I would imagine it happens to everyone to some extent as they get older. I am more fatigued in my 30s than I was in my teens - even though I was fatigued then - in my opinion anyway. I've never considered myself "high energy". It's hard to tell whether I have a normal energy level that I perceive as low, or if it's actually low. What's the baseline?

Part of it is just laziness too. I could work out right now or I could do nothing. I am tired, but if I got off my butt, I could probably get some fitness activity in and it may propel me into a better state with less fatigue. it's a nasty cycle. have you tried being more active?
Posted 8/31/2016 11:20 AM (GMT 0)
Personally, I always experienced the most fatigue when starting to go into remission. (or maybe I just noticed it more when I started to try to get vertical?)

fatigue is one of those chicken/egg cycles where it is so hard to pinpoint where it starts and ends.

I do find that I start to experience the most fatigue when my ferritin levels get low or my vit D levels get low (winter in new england....brutal!) Have you been checked for any deficiencies?

Also, are your red blood cell counts normal? If you have lost a lot of blood, your body has to work really hard to replace it and that can be utterly exhausting.
Posted 9/3/2016 7:35 AM (GMT 0)
Thanks to all for response! I have never felt quite so fatigued and suspect that the imuran is partly to blame. It is a clear difference compared to my usual response to a flare up. The disease no doubt takes its toll as well. I shall try juicing being the proud owner of a nutribullet. Seeing the IBD nurse on Monday so I will see what she says. If it's the imuran then I will just have to suck it up because the drug is definitely working and it's heaven to be well again.

Thanks again for all your help!

Cath
Posted 9/6/2016 10:03 PM (GMT 0)
I'm always so easily exhausted!!! Honestly though over the last years so much has happened who knows what it's from so I can't say for sure.
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