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Ileostomy help

Tue May 31, 2022 2:53 pm
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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 times once at night. I am quite careful to what I eat.

According to my consultant, my blood tests do not show that I am not dehydrated (although I wonder if I am) and do also 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 reign 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.  

Tue May 31, 2022 4:06 pm

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.


MeetAnOstoMate - 26,891 members
Tue May 31, 2022 5:10 pm

Hi Mike ,  I experienced and continue to  experience this exhaustion  from time to time . Better sleep helps a lot . You could have " Sleep Apnia"  , 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 ☘

Tue May 31, 2022 7:35 pm

     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.

Wed Jun 01, 2022 1:31 am

Hi Mike

Welcome to the site. I have had my ileostomy for just over two years. I would say for the first 6m 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 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

Wed Jun 01, 2022 8:02 am

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 yo at the time so it's not just for kids anymore. Don't screw around. Get to a doc 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 symptom's for a few weeks before the coma so my advice to you is to finish reading this sentence and call your doctor. 

Wed Jun 01, 2022 2:01 pm

Mayoman wrote:

Hi Mike ,  I experienced and continue to  experience this exhaustion  from time to time . Better sleep helps a lot . You could have " Sleep Apnia"  , which will really drain your energy . Kitty...

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 similar to the drip-drop powder you have abroad

Wed Jun 01, 2022 2:02 pm

Caz67 wrote:

Hi Mike

Welcome to the site. I have had my ileostomy for just over two years. I would say for the first 6m I was in the same place as you. And slowly built up on my exercise and drinking fluids li...

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

Wed Jun 01, 2022 2:23 pm

You would have to have a hba1c or glucose test not always done so would definitely be worth asking. XX

Wed Jun 01, 2022 2:25 pm

They are the blood test for diabetes and it would be very accurate XX

Wed Jun 01, 2022 6:37 pm

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 years 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. A!c 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 in not producing insulin, making you a type 1.. You may very will 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.

Wed Jun 01, 2022 9:37 pm

I had everything you described. Test were done for thyroid, anemia,CKD ,B12, vitamin D,potassium you name it. Turn out for me it was low potassium and CKD stage 3 BUT with you saing your blood test are ok and your drinking plenty fuilds 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 I have diabetes due to necrotizing pancreatitis so I got hit with both an ileostomy and diabetes. And with diabetes you can get tried and can have a dry mouth and eyes and as you may know already if you dont keep hydrated it will effect other parts of your body.So I defiantly would get checked for diabetes just to rule all things out.If that's not it I'd asked to be checked for thyroid or anemia...Good luck and hope u feel better soon!

Fri Jun 03, 2022 10:10 pm

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. 

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