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Posted 4/28/2013 8:10 PM (GMT 0)
New to Forum. Diagnosed with left side UC a year ago and seemed Ok on mesalazine, but its the fatigue that hits me like a steam train that is getting me down. Had blood tests but nothing showing as a problem. Is this common to UC sufferers. If so any suggestions on how to deal with it.
Posted 4/28/2013 8:18 PM (GMT 0)
Welcome ... Fatigue is common w UC, especially when you're flaring. I have spent years exhausted from this illness. If you can manage it, exercise can help (btwn flares and joint pain -another common UC problem- I was never able to consistently exercise).
Posted 4/28/2013 9:51 PM (GMT 0)
Yup, I had this problem too, even when bloodwork was fine.

You can think of it this way...your immune system is on hyperdrive. You get tired when you are fighting an outside bud/invader. Your body thinks you colon is also an invader. Therefore you immune system is going after it...and you get tired.

Make sure you drink enough water (or electrolyte beverages) as well, because slight dehydration can make you tired.
Posted 4/28/2013 9:56 PM (GMT 0)
Starting to strength train if you are healthy enough. If you are not healthy enough changing medications so you become healthy enough yo start.
Posted 4/28/2013 10:13 PM (GMT 0)
I had this issue when I was in remission as well. Unfortunately, I attributed it to the lialda. Went off meds, flared back up and ended up in a worse state.

My first suggestion is to stay on your maintenance meds for life, as that is keeping you in remission.

The next three things should be diet, sleep and exercise. Make sure you are getting at least 7-8 hours of sleep each day. For diet, limit refined foods and get more vegetables+fruits+fibers in your diet -- I suggest adding spinach to your diet as that seems to be the best type of anti-inflammatory food for us UCers. For exercise, try to lift weights and do sufficient cardio to make your body tired, if you aren't already.

The most important thing is that your disease is under control, which is wonderful. I really do think you can finetune your body to fix the fatigue issues.
Posted 4/28/2013 10:48 PM (GMT 0)
I have had absolutely no energy for YEARS. I don't remember ever having a normal energy level, since i was a child...
Posted 4/28/2013 10:49 PM (GMT 0)
I try to listen to my body as much as I can. If I can fit in a power nap it does wonders to get me through the rest of the day. I am just now trying to exercise by taking walks. Some days I have the strength to do it and other days the nap comes first :) I agree with the other posts about hydration also being very important. It does seem like our bodies are in overdrive.
Posted 4/29/2013 9:39 AM (GMT 0)
Fatigue is the worse part. That overwhelming feeling of "I need to go to bed NOW". Blame it on blood loss or overworked immune system or whatever. It is aweful.

For me, fatigue and mouth ulcers are first signs that I am about to flare. It seems the only thing that helps me is prednisone. I am either foggy and fatigued or clear and racing depending on whether or not I am taking prednisone.
Posted 4/29/2013 11:18 AM (GMT 0)
Browsed,

Welcome to the forum.

IMO, alot of the fatigue can sometimes come from the mesalamines.

And also malnourishment (due to malabsorption of foods, nutrients, etc...).

A few questions, you can blood work came back normal?

They don't always check for vitamin d3 and b12, did they check these?

Keep in mind that low levels of vitamin d3 are associated with UC, fatigue, depression, among many other diseases. Many people have levels of 29-30, which docs consider normal.

But in fact research has shown that adequate levels should be in the 40-50 range, and I have even read that for those with auto-immune diseases, that number should be closer to 50-60. I keep my levels in the mid-60's.

Are you taking any supplements?

There are other things you can do for your UC symptoms which might help more than just the meds, for your UC health which might mean less fatigue and perhaps even the ability (eventually) to reduce some meds.

If you are interested, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 4/29/2013 1:26 PM (GMT 0)
46&crashing.. you hit the nail on the head for me. Mouth ulcers and extreeeeeeme fatigue were my first signs. I had my first flare/diagnosis last year. Was fine after the whole Pred thing. Stopped Lialda. Fast-forward to a little over a month ago and I started getting mouth sores and the fatigue was crazy. I was asleep by 830 which is NOT like me. (night owl). Called the doc and started Uceris (mistake). Finally on Pred. Now I gotta do that whole roller-coaster again.
Posted 4/29/2013 2:36 PM (GMT 0)
Have you been checked for Candida? I made the mistake of thinking my fatigue was "normal", related to my UC. When it started getting a strange rash all over, I knew there was more to it. Since I've started treating myself for Candida, I'm finally reversing all the myriad of symptoms I had including fatigue, brain fog, and the rash. I've since learned that Candida and UC often go hand in hand.

Good luck!
Posted 5/18/2013 5:52 PM (GMT 0)
Hi,
I was diagnosed at age 41. I am now 65. I could echo a lot of the things that have already been posted on this thread. I suffer from extreme fatigue and have for most of my life. And I suffer from it even when I am in remission. I have found some things that have helped. I quit eating sugar. That cuts down on the sugar swings. (I don't have diabetes, but it runs in my family.) I put lots of effort into getting my allergies under control. That made a big difference. I did shots and eventually the NAET program. The most recent thing that has helped is I started taking large doses of l-lysine. I discovered that I had an EBV thing that was coming and going. I don't know if that is related to the UC, but the l-lysine has helped. But, alas, I still get overly fatigued. Sometimes I just have to commit to the couch for as many days as it takes for me to start feeling better. Now that I am 65 I can get away with doing that. Thanks to everyone for your blogs. I don't feel so alone.
Posted 5/18/2013 6:36 PM (GMT 0)
it sure would be nice for the OP to return considering there's been a few awesome replies.

q
Posted 5/18/2013 6:51 PM (GMT 0)
too tired !
Posted 5/18/2013 7:50 PM (GMT 0)
sigh....
lol.
q
Posted 5/19/2013 1:33 AM (GMT 0)
I am in the same boat. Bad flare and recovery. Slowly and I mean slowly getting some strength back. For now though everyday task are like running a marathon. Amazing how little can exhaust me.
Posted 5/19/2013 3:14 AM (GMT 0)
UC seems to be a disease of peaks and valleys for me. Diagnosed in '89 and Jpouch in '95. My energy levels were never like they were before UC. I realize it is so important to rest when my body says rest. It's frustrating and we seldom make plans because we've had to cancel so many times. Now on good days I do as much as I can, and rest when I can't. Just realize that our bodies work on a very different recovery timeline than other folks. I took high dose vitamins since '90 and that has helped some. Learned I needed to be glutenfree and definitely no refined flours or sugar, alcohol is a big no-no, sadly. But even after all the hospital time, transfusions, surgeries, pain and still living with diarrhea daily, I treasure the good moments and get up and go when I can.

Patience as you recover and then unleash your exuberance when you feel well again! Peace.
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