Dealing with Fatigue after Ileostomy Surgery - Need Advice

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Mike1988

Hello

My name is Mike, 34, and I have recently joined the Ostomy Forum. I have had my permanent ileostomy now for a few years due to Ulcerative Colitis and a failed internal pouch. Ever since my surgery, I have always had problems with extreme fatigue and tiredness, lack of motivation, dry eyes, and dry mouth. To control my output, I am currently taking Loperamide (10mg) and Omeprazole (80mg) on a daily basis. I empty the pouch on average 5-6 times a day and most of the time once at night. I am quite careful about what I eat.

According to my consultant, my blood tests do not show that I am dehydrated (although I wonder if I am) and do not show that I am lacking in my key vitamins and minerals. I do take a multivitamin supplement once a day.

What I would like to know is if anyone else has suffered from extreme fatigue/tiredness since ileostomy surgery and how they combatted this? This is a huge problem for me as I used to be very active and have had to rein in my exercise quite rapidly. I also used to sing in a choir but have not done this for a while due to problems with dry mouth. I have read various articles that having a stoma has given people their life back but for me, this hasn't been the case at all. I really just want to feel fit and healthy again and have a good social life once more, something of which I do not have at present. I feel that these issues are really holding me back from the life I want to live.

Any advice would be greatly appreciated.

TerryLT

Hi Mike, I have had my ileo for a little less than two years, and I have not experienced any of the symptoms you mention. As long as I sleep well, my energy level is good and I'm just as active now as I was pre-ostomy. I don't know anything about the medications you are taking, but if your doctor has tested you for everything and is aware of any side effects of the meds, and has no answers to offer you, maybe you should try another doctor? Extreme fatigue and the dry eyes and mouth certainly don't sound normal, and obviously they are not normal for you. Sorry, I can't think of any other advice. I do know that low sodium can result in fatigue, (that can be the result of drinking too much water and flushing all the sodium from your body) but if you have had blood tests to rule that out, I really don't know. Good luck.

Terry

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Mayoman

Hi Mike, I experienced and continue to experience this exhaustion from time to time. Better sleep helps a lot. You could have "Sleep Apnea", which will really drain your energy. Kitty had this and began using a machine at night and it helped immensely!! One suggestion is maybe B12 shots, not pills. Apparently B12 can be a deficiency with an Ileo. A good solution to keep your hydration up is a powder called "Drip-Drop" even if tests show that you are good for hydration, just a thought.

I hope you find a resolution, Mike.

All the best, Magoo

RaenotRay

The above advice is amazing. The only thing I would add is mental health. I'm certain you have had your share of things to navigate and adjust to. Sometimes fatigue is due to depression or anxiety. Before my emergency surgeries, I never took any medication to help in those areas. I've needed to since surgery, and I'm trying to give myself grace. Just a thought as we're all more than just our physical entity. Welcome to the fold.

Caz67

Hi Mike,

Welcome to the site. I have had my ileostomy for just over two years. I would say for the first 6 months, I was in the same place as you. And slowly built up on my exercise and drinking fluids like they were going out of fashion. Then just after New Year, I started to flag again, got blood work done, and ended up needing a blood transfusion. I am slowly getting back to how I was before. Just a quick question, have you been tested for diabetes? Keep us posted on how you get on. XX

 
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StPetie

Hi Mike. I had the exact same symptoms before I had my ostomy. The thirst and exhaustion were pretty freaking extreme. Turns out it was type 1 diabetes. I was 60 years old at the time so it's not just for kids anymore. Don't screw around. Get to a doctor and get checked ASAP. Not realizing what it was, I put off getting checked. Then woke up in ICU after 5 days in a coma and a 45K life flight. Pretty much every abdominal organ sustained damage from my body shutting down. Hence my presence on this site.

I only had your symptoms for a few weeks before the coma so my advice to you is to finish reading this sentence and call your doctor.

Mike1988
Reply to Mayoman

Thanks for this. I have been wondering about B12 deficiency myself, so I will push this to see if it could be that. Here in the UK, we have something called Dioralyte, which I think works similarly to the Drip-Drop powder you have abroad.

Mike1988
Reply to Caz67

Hi, thanks for your reply. No, I haven't been tested for diabetes before. Would this show up on a blood test?

Caz67

You would have to have a HbA1c or glucose test, not always done, so it would definitely be worth asking. XX

Caz67

They are the blood tests for diabetes and they would be very accurate.

StPetie

You can likely run down to the pharmacy and get an HbA1c test. Here in the states they run 70 to 100 and include 4 test strips which is a year's worth of testing. If you have a diabetic buddy, you may be able to have them test your glucose level. If not, glucometers are also available at the pharmacy. Glucose varies hour by hour, therefore 1 test really isn't that informative, but still worth having. An A1c would be a better indicator at this point as it's an average over the past 3 to 4 months. Also, be sure to ask the doc for a C-Peptide test. Many adults, me included, are misdiagnosed as type 2 because type 1 is usually something most people get as adolescents or teens. If C-peptide's are normal, your pancreas is producing insulin and you're not type 1. If they are low, the pancreas is not producing insulin, making you a type 1. You may very well be neither, but I'd find out ASAP as waiting can do you no good.

Hopefully you can see the doc quickly and not have to be bothered with the tests yourself. But I thought I'd mention them "just in case." I'm hoping the issue is something different and fixable. Good luck.

Rose Bud 🌹

I had everything you described. Tests were done for thyroid, anemia, CKD, B12, vitamin D, potassium - you name it. It turned out for me that it was low potassium and CKD stage 3. But with you saying your blood tests are okay and you're drinking plenty of fluids (which most people think they are but aren't, like me - I have to drink 100oz a day per my doctor), why I agree with StPetie is that I have diabetes due to necrotizing pancreatitis, so I got hit with both an ileostomy and diabetes. And with diabetes, you can get tired and can have a dry mouth and eyes, and as you may already know, if you don't stay hydrated, it will affect other parts of your body. So I definitely would get checked for diabetes just to rule all things out. If that's not it, I'd ask to be checked for thyroid or anemia... Good luck and hope you feel better soon!

Superme

Hi Mike, I also had UC and an inner pouch. I found I was getting tired and my doctor noted two things. I had a thyroid problem and my testosterone was very low. I was given levothyroxine, D2, and testosterone shots. I also have stage 3 kidney disease. My energy level is normal now. My blood pressure is normal. Loperamide is not a good thing to keep on taking. If you have watery output, there are foods that can help solidify it. I was also told to go on a diet, but I said to my doctor if I have to be on a diet, I may as well not live. I eat anything and everything despite all the potential problems I might encounter. I don't let watery output get to me. I have come to accept it. I have good and bad days like everyone. All I have to do to make my day better is think that unfortunately there are many people who are unfortunately worse off than I am.

NOLA Lady

B12 Sublingual tablets for sure. Make sure it's Methylcobalamin, not Cyanocobalamin. Also, eat more because of our short bowel now and things going through faster, we don't absorb all of the nutrients. So eat twice as many meals. I know it's hard to chew that much, so try smooth things like shakes and soups. They go down easier. I see a nutritionist, and just eating twice as much has made a huge difference. Keep us posted.

Mike1988

Hello all

Thanks for your sound advice. I have finally got my blood tests done again and had the results tonight; I have pre-diabetes. This would certainly explain the problems I have been having. Does anybody have this and how have you been able to manage it with a stoma? Thanks