Tired AF

Is anybody else ALWAYS tired, I feel so drained I'm 3 months post opt and I feel like I could sleep for days at a time, I have zero energy it feels like and I'm not doing anything to over exert myself but damn I could hibernate like a bear in the winter.

Hi..saw your other posts. Understand your " tempt" status as a ileo..

You mentioned you are 3 month post op.

Yes TIRED AF would be normal.  Get your rest. Nap....I know being  so young and taking advice like a nap doesn't fit well with most newbies..but....we know... we get it.. we have had this illness for lengths of time.

Your body went through hell and needs recovery time..

Hang in there.  I get your enthusiasm wanting to know...

We are here. Sit tight.. 

 

Like Warrior said, tired AF is pretty normal.  Your body went thru a lot and even tho you’re young, your body has to heal and rest will help.  I’m 55 and it took about 6-7 months til I got back to my normal level of stamina and not needing a nap every day (sometimes I still do).  Plus if you’re losing a ton of fluids, you may be a bit dehydrated, which will make you tired.  Make sure you’re drinking enough water or electrolyte drinks.

So true. Ditto that..watch the B.P. too.. if dizzy..

Hi Spookster,

  I hate being the odd man out.......no wait, that's a lie......I love being the odd man out.........but I'm going to say that at 3 MONTHS out.......you shouldn't be THAT tired.  What you're describing is fatigue, not just being tired. If we were talking 3 days or 3 weeks.........then sure, I could see it.    But 3 months post-op and your body should be well on it's way to adapting to the new you.  I'd be looking for a nutritional deficiency.  Hydration, as mentioned, could be part of the reason, as could an electrolyte imbalance.  The two are related, but not the same thing.  You can be hydrated and still be lacking in specific electrolytes, and vice versa.  Could also be a specific vitamin or mineral is missing, probably because you can't absorb it any more thru your bowels........or you got something else going on.  

  Best thing for you to do is get your gastro to order the panels, and if they're clueless then get with a dietician, or even a sports nutritionist, and get tested.  It's fast and easy and they should be able to pinpoint what you're missing (or getting too much of).  

;O)

Thank you so much, I appreciate your kindness, and I do take naps but I feel so guilty being tired all the time and feeling stuck in bed, I have two boys 5 and almost 3 so it's hard to rest but I try and get as much as I can. Mentally struggling with this has been hard but it's good to talk to others going through the same thing, I've dealt with symptoms on and off since I was diagnosed with Crohn's in 2011, just hoping this new treatment works.

Thank you it's good to see I'm not alone with these symptoms, sometimes I feel crazy.

Thank you, to me this doesn't feel normal, since my surgery I've been to my local ED 5 times and was admitted on the last time, wasn't given any answers just that I had inflammation and gave me iv steroids and sent me on my way. I have a scope scheduled but not until the end of June, hoping my new treatment starts to work so I don't end up back in the hospital. I drink pretty much only water, but could always drink more.

Always. I have infusions every 6-8 weeks and they are exhausting. They take so much out of me. So yeah I Def know the feeling of Always feeling tired

Are you eating ok?.are you getting fruits and veggies or juices to replace the ones  we cant eat?  Maybe some G2 garorade or gatorade zero? The tiredness could just still.be from surgery and anesthesia. I can remember  feeling drained for a long while after surgery. Hopefully that's all it is. Hope you feel better soon. 

Hello, I’m sorry you’re struggling with fatigue. I do as well and the best thing for it is exercise- I know it sounds tiring thinking about it but it really helps. I go to the gym and do weight training and cardio and I feel amazingly energetic after. Just start out slow and listen to your body when you need rest. Best of luck to you. 
😇

I feel this. I've been on infusions of some kind since I was diagnosed in 2011.

I know ever since surgery I haven't been hungry I eat but I feel nauseous most of the time, I do drink a lot of water but I'm not sure, I'm also anemic and get iron infusions so that could be part of  why I'm so tired. I honestly have no idea.

Water may not be enough to keep you hydrated. Think about that.. sure you are peeing clear liquid.. a good sign..but there are no nutrients in water.. like w30 Bob said..hydration. 

Also overlooked are vitamin deficiency.  When u get lab work done, ask for that as well.

Vitamins and minerals. Even if just for reference.  Once year..get it done..

Heard from someone here who was passing out due to low carbs.  Imagine that?  While driving!!. 

Vitamin C..also...it's amazing how often overlooked these essentials are. 

Hey, not sure about distance for ya, any chance you’re receiving treatment at a Cleveland Clinic location? I was reading through your posts trying to get a bigger picture… being anemic will leave you feeling tired… I’m on prescription Vit D from beginning of October-beginning of May literally because I live in Ohio and we are known for cloud cover much of the year at least this northern region of the state. Vit B is also a big one for energy… I switched from giving myself injections to a daily tablet (just the Trader Joe’s brand) that dissolves under the tongue and my GI Dr is on board with that. I don’t have any abdominal colon left. The nausea… there could be numerous reasons for that from medications you’re on to nutritional deficiencies to fluctuating hormones etc…  I accidentally had 3 surgeries in 2022 (planned shoulder reconstruction then my colon got put on death row- it was evicted and a loop ileostomy was formed so my IRA connection could heal). I was really tired for months after and took 2 naps a day at first then down to 1 (kinda like a baby goes from the 2 to 1). Your kids are at a more physically demanding age than mine were… I had a lot of friends/family making sure their lives kept going at a normal pace. I’m guessing with 2 boys they have a lot of energy ☺️ Being a mom to 2 littles is exhausting on its own. How’s your support system? I think having young children and going through this level of health stuff is good and hard at the same time. The good… they force you to keep going and stay active…the hard… well I think you know that part. Please don’t compare yourselves to other moms that are not battling a chronic illness. Most moms know ‘normal’ tired with kids… what you’re dealing with is a whole other level of fatigue. One thing I was told was to carve out an hour during the day for just me to rest… read, watch something, sleep… but alone resting (my dogs were the only ones allowed with me 😉). Having that one hour of rest didn’t make me feel perfect but it really helped. 

*I do have bloodwork done regularly,so  my Drs know which deficiencies we need to add supplements to… sometimes the bloodwork is routine, other times it’s because of symptoms I’m having… then it’s either me requesting the blood work or the Dr saying hey I think should check x,y,z

Yea yea yea..what Jodie said above..ditto..aka crappy colon. 

😊

Tony, let’s hear your best parenting advice… and go! 😁

Yes, like the others mention....maybe lacking vitamins from not eating well. As we speak I have scurvy. So sick from lacking vitamin C just from not being mindful about my diet. I been sick for 2 months and had to quit work and not knowing why im so sick . Im.sure I have other things going on as well. Going to get the rest of my vitamins checked soon. 

I hope you can get your diet together even if you eat very small meals several times a day. Grazing they call it but getting in all your essential food groups so your body can heal and give you some energy back. Also if all your getting in is water you may have low potassium and magnesium. 

I would get to your doctor and get this all squared away and with your diet and fluids. 

Best parenting advice you ask?

Don't do it. It's a trap.!

You are odd bro. Vote came in last week.  

And damn proud of it!

;O)

 Check the blood pressure as well. Low can make you tired and sleepy. Best wishes.

Hiya EA

Totally agree with what you have put. Sometimes if we do nothing then this make you more tired. Some form of gentle exercise does wonders for not just your body but your mental health too. Xx

Thank you so much for the advice, I actually got diagnosed in Toledo then was at Nationwide Children's, then the Cleveland Clinic for about 6 years then I switched to my local GI after having kids it was just too far of a drive 2 and a half hours from me, and now I'm currently being seen by OSU that's where I had my surgery. Also I am on vitamin D but not vitamin B so maybe I could try that. Having 2 little boys definitely tiring on it's own without the crohnic illness. My youngest is almost 3 and has Autism so it's even harder with him, he doesn't talk yet and his favorite thing to do is make you a jungle gym which I can't do obviously right now.

G-Day Spooky, I think your last message just explained why your tired all the time. Regards IGGIE

Hi Spooky like w30bob said possibly lacking nutrients, for me with my ilieo. i was low on b-12 even tho i take a multi vit. every day.

Good advice  given by all the o mates. No calories  in just drinking water. Vitamins  are definitely  a must. Try taking them for awhile and see the results along with the other mentioned suggestions.  Don't  feel guilty for resting ; raising  kids takes so much energy; and you have extra challenges.  We are all here for you to give you the emotional  support  you need.

What does your doctor say?  Are you anemic?  Electrolytes ok?  C Reactive protein up?  There are alternative treatments of Crohn's too.    

Yes, postop your body is healing but other things can be going on too at 3 months.    

Hi Spookster,

  I know it's tempting to start trying things, but you have to be careful.  Some supplements are simply flushed out of the body when you take too much of them, but others are not flushed out and accumulate.  And when they accumulate to a certain point they cause bad things to happen.  So if you want to experiment without knowing what's what make sure you check online to see what you're adding to your suppliments can't hurt you if you take too much.  It really is easier to just get the bloodwork done and in a day or two get the results.  You'll know exactly what you're lacking or getting too much of.  Guessing might work, but "knowing" will work.  These days LabCorp even does most blood testing without the need for a doctor's prescription (but on your dime, not your insurance's).  Just check their website for the list of testing they can do.  But I'd work with a Doc because they can order higher prescription doses of what you're lacking, and have them compounded to work with how you best absorb them.  Let us know how you make out.

;O)

My surgeon told me I would be tired for 6 months after my emergency colostomy.  He was spot on, and I don't have underlying conditions (I had a stage 1 colon cancer, but it had not spread beyond the polyp - a follow-up biopsy was what caused my perforation and colostomy).  With everything else you have going on, probably will be more like 6 months - 1 year.  Stay hydrated...watch your blood pressure....I passed out 2 months after my surgery and ended up back in the hospital - weight loss/dehydration/low blood pressure caused me to pass out.  Try gatorade or Liquid IV brand packets, and maybe Ensure drinks would help as they are high protien (they gave me those in the hospital).  I hope you have someone helping you.  Best wishes!