IBD
Managing Fatigue
Fatigue has always been a huge issue for me. Even when I'm in remission, I sometimes still experience some degree of fatigue. I'm not alone in this either. 80% of patients with active IBD and 50% of patients in remission report that they experience fatigue. What do you do to manage fatigue, either in remission or during active disease? This can be how you manage it in terms of your career/school, relationships, leisure time, mentally, in regards to your usual household chores, etc.
I've included a link to the Crohn's and Colitis Foundation webpage that discusses the causes of fatigue. If you can identify a cause of your fatigue (for example, your vitamin D is low), then it can be easier to come up with proactive solutions to help get to the core of the problem. However, I think there are times when there isn't a solution as simple as just taking a course of high dose Vitamin D, in which case, knowing how to mentally balance your fatigue against all of the other demands of life can be really beneficial.
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Care Partner of Adult
Wow, you've hit on a very important chronic issue with IBD. My son suffers fatique every day of his life (living with J-pouch) and tries to battle it by staying hydrated, supplementing with electrolyte solutions, exercising, doing yoga, meditating...he's really working hard. STILL, he battles fatique. It's infuriating as his parent to feel so helpless. :-(
It's hard! As parents, we always want to take away our children's troubles, and it's really, really, really hard when it feels like you can't magically fix it for your child. I totally understand that!
Speaking from the side of the child, though, I think that having support and understanding is huge. Whether it's believing him when he says he's too tired or even offering to help out with some of the things he finds exhausting, those are all things that genuinely help. (And I'm sure they are things you're already doing!) I think those really can go a long way. It doesn't fix his fatigue, but it at least can help him feel supported, and that's sometimes half the battle for patients -- just feeling heard and understood.
Care Partner of Adult
You are very right. :-)
I am tired most of the time!
In terms of managing fatigue, when there aren't obvious deficiencies, I think there two things that can help:
1) Be gentle with yourself. If you need to rest, and it's possible, rest. Give yourself downtime. Sometimes it feels impossible to get time to rest, but other times it's about letting yourself do it and being ok with not doing other things.
2) Try to get a moderate amount of exercise and eat well. Take care of yourself as best you can.
I have been managing fatigue for so long it is a way of life now! I literally consider my energy to engage with all activities and people and then move accordingly. When I decline things and say I don't think I will have the energy to add anything else to my day I literally mean that lol! I don't think people really take it as literal as it really is but I mean it. I find that older folks understand more than younger folks do but I used to be called out for being young and supposedly expected to have limitless energy. Fatigue levels vary greatly but it is manageable and you have to give yourself grace and come to full acceptance of your limitations. I spent a lot of time being sad at times when I couldn't finish things or couldn't muster the energy to go somewhere and not being able to relate to people my age that were doing everything and going everywhere. It wasn't until I really accepted my limitations that I started giving myself grace and not comparing to others who could never understand.
Be patient with yourself, a little bit consistently goes a long way! Chip away as your energy dictates!
I totally relate to what you have shared here. Though I have grown a lot in being able to give myself grace and time/space when the fatigue takes over, it seems like this symptom is the hardest for others to wrap their heads around. Especially when it comes to work and school, I feel that few people understand what this really means and dismiss these symptoms which is hard when it comes from a supervisor (previous experiences 😔). I think that the Crohn's and Colitis UK phone app, In My Shoes was a great way to get my friends and family to relate to what how this symptom affects me!
I do not have IBD but I have major fatigue from having MS. We can all learn from each other
Care Partner of Adult
I've got to throw out there the issue of malabsorption that many with UC and Crohn's suffer, which inevitably leads to fatigue. If you're not getting the proper nutrients, you're going to lack energy.
I know that we're not doctors or scientists here, but there is real science and proof of the "leaky gut" syndrome with many IBD patients. I recommend learning more about Zonulin and proper diet to manage this issue. It could go a very long way!
Agreed, @Wendy_L ! When we experience fatigue, it's always worth looking to see if there is an easily identifiable cause that can be fixed -- whether through improved nutrition or supplementation. It's always best to get to the root of the issue vs managing around the issue while the problem persists.
Patient
Hey @Katelyn How's your fatigue been lately?
@Jackie_Z Well, it was doing well. And then I got COVID. 🤦 My daughter brought it home from daycare right before Easter. It took me three weeks to even just feel moderately normal, but it still has me feeling run down. BUT...I think that's a pretty "normal" problem to have and (for once) not my IBD's fault!
Oh no! Im scared to get Covid. I don't want any more of what I already manage in fatigue or anything else. Im glad you and your daughter got better.
Oh no! Im scared to get Covid. I don't want any more of what I already manage in fatigue or anything else. Im glad you and your daughter got better.
Ahhh thank you for sharing this.
As I have many health challenges but not IBD I can completely relate to all of this!
Patient
I got Covid in January and it sounds like it was similar. I had a terrible cough for almost a month and was really wiped out for a few weeks. Had a hard time keeping full brain power, but it did resolve.
Yeah, I was very nervous about getting it, so I understand completely. I definitely don't recommend it, but if you're vaccinated, it will hopefully be okay (as in, no hospital). My daughter is almost 3 and it wasn't even obvious that she was sick at all. She had the tiniest runny nose and a baby cough. A normal cold is honestly 10x worse for her than what this was! The only way we knew she had it was because we got a notice that there were positive cases in her cohort, and then both my husband and I got sick within about 12 hours of each other. He bounced back really fast, but it took me a lot longer. I'm doing okay now, thankfully, but it did throw a wrench into the fatigue situation for me.
@Jackie_Z It does sound like your experience was similar to mine. The cough and fatigue were miserable!! I'm lucky in that my brain fog wasn't ever too bad; I've heard a lot of otherwise healthy people having a tough time with that, so seems pretty common. The one that got me was that I had really bad heart palpitations for about 3 weeks along with that cough. It's a wild ride.