Recovering from Ileostomy Surgery - Seeking Advice on Persistent Tiredness

Hi, I am 75 and 3 months post-ileostomy surgery. I also have a mucus fistula. I was in the hospital for 6 weeks prior to my operation as I was very ill, having had a bowel perforation, and they wanted to build me up before the operation.

I am still so very tired. I am getting out a little, walking, driving a short distance, having friends over for an afternoon, and even been out for brunch with friends a few times as I can eat scrambled egg on toast!

I really have to pace myself, only doing one thing a day, and am very happy to return to bed. I don't think I am dehydrated, as I am drinking two electrolyte drinks a day. Most people say it is early days and I am doing well. I know I am hard on myself, as the mind is willing but the body is weak. I feel I am in a continuous brain fog! Any suggestions or comments will be gratefully received. I had all my blood checked about 6 weeks ago and all was fine. The GP put me on folic acid.

Any suggestions or comments will be gratefully received.

Good morning!

It took me a solid 5.5 months until I was back to my “normal” energy levels after my colostomy placement, and I too had a very prolonged period of illness before that. If all your bloodwork has come back and looks good, it could just be that you need to give yourself time to finish healing. Rest when you're tired, eat well, drink plenty of fluids, and be gentle with yourself. We all heal at different rates, and your body has been through a lot. Not to mention, I think it takes us a little longer to bounce back after we're north of 50 years old.

Hi Lee, I'm 3 months on after my colostomy, and also still have a fistula on the other side of my main muscle. I had 10 operations trying to drain it; the abscess kept on brewing, and daily trips to get packed. I've got an open lay at the moment. At the end of the day, a fistula is full of poison. I also hit a brick wall about 3 o'clock and need an hour's sleep. I think it's all about time. Stay strong, mate 💪

Hi, you're doing well, Lee, for being 3 months out. It takes a while for our bodies to heal. You had an awful lot going on before your surgery; then your surgery in itself. I am glad to read that you are socially involved. If all your tests came out good, just give yourself grace to heal properly.

An overlooked item when having blood work done is having vitamins checked.

You were put on folic acid. What about magnesium? B12? There are a number of vitamins we lose and no one ever gets those levels checked. Always keep fluids up.

You have to be your own advocate and ask... or... tell them you want this test done.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

After major surgery, it takes the body two years to get back to prior full fitness, and that's what we all need to realize. We all want to go back to how we were, which is great, but the body knows the score and will tell you when you are doing too much. I'm a firm believer in the saying "Rome wasn't built in a day." Take the power naps as and when, and keep the pace you can manage. XX

2 years! 🙀

Well, that just gives us something to look forward to! Took my puppy to the park yesterday, for the first time, didn't need a 2-hour nap after.

We are looking forward to getting back to two walks a day at the park.

Your body has been through hell. It takes time to heal. You were very ill before surgery, and that took a lot out of your body in itself before even having surgery. I'm just guessing that you had sepsis and possibly peritonitis with your perforated bowel? Just those two take time to get over. You should start to get more energy over the next few months, but I agree with Caz67 that it takes around 2 years for a full recovery. I'm not being rude about age, but that comes into it and can take longer for the body to heal. B12 and other deficiencies don't always show up at first; it can take a few years before they show up in blood tests.

I think you're doing very well for so soon after everything you have been through. Well done. Keep on fighting; you will get your fitness levels back to do everything you want again.

You are all so kind and supportive. Thank you so much.

I was told that by my doctors also. 👍 Of course, I'm a dumb guy and told them to tape me up and get me back in the game. 🙄 That took about 9 months. 😁🤷‍♂️

I'm guessing you were pretty active before all the medical stuff if you're wanting to do all that you are doing only 6 weeks post-op, especially after being so sick before the surgery. Accept the time to rest, no guilt. Your body has been through a lot and like Caz said, it takes a good 2 years after surgeries to come back, and every year older we are doesn't seem to help the healing process for some reason 😁 When my one doctor wanted to start me on immunotherapy last year and I found it was a type of chemo, I wasn't thrilled and pushed back, but he said we'd already lost my colon and it was his job to prevent more damage now... so I'm living in the land of fatigue and nausea and it's kicking my butt. He did double my folic acid to help with fatigue and nausea and other side effects the medication can have. The folic acid really does help the fatigue (and nausea for me). I notice a difference within hours if I forget to take it. Not sure how much sunshine you get where you're at? Where I'm at in Ohio, my doctor has me taking prescription Vitamin D from October to March. Warrior mentioned the vitamins... another test that is often done separately is the iron levels. I give myself Vitamin B injections once a month (I do better absorbing injections/infusions vs. it going through my digestive system). All these are maintenance/boost suggestions... you're walking, staying hydrated, sounds like you're getting some good protein, seeing friends. Honestly, I'm starting to love naps and don't think I'll want to give them up, maybe that rest isn't so evil after all 😉

Hi Lee, From everything you have told us, I would say you are doing amazingly well! You just need to manage your expectations a little and I totally understand and empathize. You spent a long time in the hospital and your body has been through a lot. Just being in the hospital itself, the inactivity, muscle loss, etc., can drain you, let alone the trauma of surgery. It's also a sad fact that it takes us longer to heal and bounce back when we are older. I am 72, so I know of what I speak! You might never get completely back to where you were, in terms of strength and/or endurance, or energy level, but that is OK. I'm not where I was three years ago before my ordeal started either, but I'm back to an acceptable level and I feel strong and have good energy. It does take time, as others have said, so give yourself a break and just keep doing what you are doing. It's early days. You'll get there. Meanwhile, welcome to the site! Don't hesitate to ask any questions you may have or share anything you are going through. We have all been there.

Terry

Caz... so when you accidentally have 3 surgeries in a year... do you think it's a literal 2 years for every surgery or since it all happened in 1 year then maybe all those surgeries could be lumped into a 2-year bracket? Maybe? 😁

Hiya

Every major surgery takes two years, and if you have further in the same year, it will take more time but not two years for each. The phase I mentioned earlier is a book about your body and trauma and how it keeps the score. Xx

Caz, I have that book… along with about 7 others half-finished right now 🫣

Yeah, I know - patience isn't my strong suit either!

But it is true on a physiological level, two years is a good yardstick.

Cellular level activity needs to run at its own pace ......

BUT .......

One CAN VISUALIZE the cellular response to try and implement and support our natural processes!

You - 66, me 69 physical age .... but then, SOME of us have been through so much more physically and thus our biological age may be greater!!

K9 are sooooooooooooooooooooooooo good for us though!

[try dividing 66 by 7 hey ....... and you are taking a PUPPY for a walk [I presume - or is Rocket leading you hey? ..... only friendly banter .... but everything is relative - we are all different.

Waves

J

Lol, Jayne, my tiny, baby, precious puppy, leads me on all of our adventures!

Jodie is right on here - biologicals and chemo do remain in our energy bodies for rather a long time - chemo drugs are particularly pernicious ......

You are such a sharing, caring person, Jodie - do remember to take rest and care for yourself!

Bless you bigly

xx

J

Terry,

You are wise - as well as caring.

This age thing - you are so right - yet me, I will always think of myself as thirty-something - no matter what, yet in "reality" I can sometimes be 116 and counting (birth age 69 - but this alone is not a statistic - for our biological age again varies according to our medical history - not to mention our emotional/spiritual lives!)

But you know Terry, whilst we may not fully regain our bounce back - and I too, know of what I speak in this department - we can still aspire to being as good as we can be without dropping beneath our bar - and I do not mean by way of falsely held expectation either!

But, we all need to learn to be a tad more gentle upon ourselves I suspect ;-))

Thank you for your contributions Terry. You inspire me much.

Hugs,

J

Well, thank you for your kind words and I would say, right back at ya. You've made some pretty inspiring posts on this site as well!

Terry

Hi Terry

I am 77 years of age and 4 months in with a stoma, and for the first 2 1/2 months, I could barely shuffle around.

Very low magnesium and iron levels, which I now take meds for.

The best advice I have had was to keep moving, at your own pace, but keep moving as much as you are able.

Then diet, lots of turkey, eggs, and high-protein food, definitely no processed foods, plus lots of vegetables.

This has worked for me, and this week I got back to riding my bike again.

I appreciate that we all have different health issues, but don't give up.

I had to give myself a serious talking-to to get moving; at our age, every day is a bonus, and I told myself that I am not going to waste any of it.

Hang in there, Stoma Buddy

:-)

J

Lee, There's a condition called Critical Illness Myopathy-- muscle weakness following a long period of illness with limited activity. Your extended hospitalization prior to your surgery likely accounts for much of the weakness you're experiencing! The recovery period can be quite long and, ideally, would include physiotherapy to get the muscles working again.If you have not had or cannot get that kind of professional guidance, there's always YouTube. Start gently. Another area to pay attention to is your protein intake. A dietician can guide you to be sure you're getting enough. Hint: it will very likely be more than you think you need and may require adding in some protein supplements. 

I had my ileostomy last NOV at age 77, left hospital in mid DEC to enter Rehab for the myopathy, and came home on 05JAN for 3 months of PT home visits. I well remember the feeling that I could do "one big thing" each day but not have enough fuel in the tank for much more. It was late April, nearly 6months post-op, before I started feeling stronger. You'll get there. 

(Irony: By midMay, my progress suddenly stopped. New diagnosis: MDS-EB1 (myeloplastic syndrome with extra blasts). It's a blood disorder without a cure but I've been having, and will continue to have, monthly chemo to keep it from advancing into leukemia. My treatment team has been top notch in getting my side effects under control and I'm hopeful I'll soon get back some of the strength I was beginning to feel!) 

Yes, I agree 🔋. Naps in the afternoon are essential. I am retired but still use a big screen PC most days. In the late afternoon, my eyes just close; yes, they close, no choice. Oh, two years post-operation, 81 years old, high-speed production, so limited meals out are not worth it. Facilities don't cater to us.