Post-Op Fatigue: Anyone Else Feeling Drained?

Replies
33
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586
Spookygurl98
Apr 12, 2024 9:45 pm

Is anybody else always tired? I feel so drained. I'm 3 months post-op, 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 overexert myself, but damn, I could hibernate like a bear in the winter.

warrior
Apr 12, 2024 11:02 pm

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

You mentioned you are 3 months 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...

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Kas
Apr 12, 2024 11:17 pm

Like Warrior said, tired AF is pretty normal. Your body went through a lot and even though you're young, your body has to heal and rest will help. I'm 55 and it took about 6-7 months until 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.

warrior
Apr 12, 2024 11:27 pm
Reply to Kas

So true. Ditto that. Watch the B.P. too. If dizzy...

w30bob
Apr 13, 2024 12:09 am

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 its 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 anymore through 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)

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
Spookygurl98
Apr 13, 2024 12:12 am
Reply to warrior

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.

Spookygurl98
Apr 13, 2024 12:14 am
Reply to Kas

Thank you. It's good to see I'm not alone with these symptoms. Sometimes I feel crazy.

Spookygurl98
Apr 13, 2024 12:24 am
Reply to w30bob

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

Past Member
Apr 13, 2024 1:08 am

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

Hisbiscus
Apr 13, 2024 1:22 am

Are you eating ok? Are you getting fruits and veggies or juices to replace the ones we can't eat? Maybe some G2 Gatorade 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.

Earth Angel
Apr 13, 2024 1:23 am

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.
šŸ˜‡

Spookygurl98
Apr 13, 2024 1:43 am
Reply to Anonymous

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

Spookygurl98
Apr 13, 2024 1:47 am
Reply to Hisbiscus

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.

warrior
Apr 13, 2024 1:59 am
Reply to Spookygurl98

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 deficiencies. When you get lab work done, ask for that as well.

Vitamins and minerals, even if just for reference. Once a 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.

CrappyColon
Apr 13, 2024 2:26 am

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 pictureā€¦ being anemic will leave you feeling tiredā€¦ I'm on prescription Vit D from the beginning of October to the 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 energyā€¦ 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 nauseaā€¦ there could be numerous reasons for that, from medications you're on to nutritional deficiencies to fluctuating hormones, etcā€¦ 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 2 to 1). Your kids are at a more physically demanding age than mine wereā€¦ 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 ā˜ŗļø 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 goodā€¦ they force you to keep going and stay activeā€¦ the hardā€¦ well, I think you know that part. Please don't compare yourself to other moms that are not battling a chronic illness. Most moms know ā€˜normal' tired with kidsā€¦ 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 restā€¦ read, watch something, sleepā€¦ but alone resting (my dogs were the only ones allowed with me šŸ˜‰). 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 toā€¦ sometimes the bloodwork is routine, other times it's because of symptoms I'm havingā€¦ then it's either me requesting the blood work or the Dr. saying hey I think we should check x, y, z.

warrior
Apr 13, 2024 2:30 am

Yeah, yeah, yeah... what Jodie said above... ditto... aka crappy colon.

šŸ˜Š

CrappyColon
Apr 13, 2024 2:36 am
Reply to warrior

Tony, let's hear your best parenting adviceā€¦ and go! šŸ˜

Hisbiscus
Apr 13, 2024 2:48 am
Reply to Spookygurl98

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 have been sick for 2 months and had to quit work and not knowing why I'm so sick. I'm 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 you're getting in is water, you may have low potassium and magnesium.

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

warrior
Apr 13, 2024 3:15 am
Reply to CrappyColon

Best parenting advice, you ask?

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

warrior
Apr 13, 2024 4:10 am
Reply to w30bob

You are odd, bro. The vote came in last week.

w30bob
Apr 13, 2024 4:25 am
Reply to warrior

And damn proud of it!

;o)

bowsprit
Apr 13, 2024 9:15 am

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

Caz67
Apr 13, 2024 11:12 am
Reply to Earth Angel

Hiya EA

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

Spookygurl98
Apr 13, 2024 12:19 pm
Reply to CrappyColon

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. 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 is definitely tiring on its own without the chronic 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.

IGGIE
Apr 13, 2024 1:18 pm
Reply to Spookygurl98

G'day Spooky, I think your last message just explained why you're tired all the time. Regards, Iggie

ron in mich
Apr 13, 2024 1:23 pm

Hi Spooky, like w30bob said, possibly lacking nutrients. For me, with my ileo, I was low on B-12 even though I take a multivitamin every day.

Morning glory
Apr 13, 2024 2:29 pm

Good advice given by all the mates. No calories in just drinking water. Vitamins are definitely a must. Try taking them for a while 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.

gentlejohn
Apr 14, 2024 3:00 pm

What does your doctor say? Are you anemic? Electrolytes okay? C-reactive protein up? There are alternative treatments for Crohn's too.

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

w30bob
Apr 14, 2024 4:49 pm
Reply to Spookygurl98

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 supplements can't hurt you if you take too much. It really is easier to just get the blood work 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)

DexieB
Apr 15, 2024 6:52 pm

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 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, it probably will be more like 6 months to 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, and 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 in protein (they gave me those in the hospital). I hope you have someone helping you. Best wishes!