Severe Fatigue After Ostomy Surgery - Seeking Advice on Symptoms

Had ileostomy surgery in July, though I had fatigue before surgery, I always thought it was just nutrition and illness related. I'm doing much better nutrition-wise, but my fatigue is far worse. I'm severely exhausted, I am dizzy, I black out and have fainting spells from pressure changes such as entering another room or standing too fast. I often wake in the middle of the night with my heart racing, dizzy and shaky with low blood sugar. I cannot concentrate on anything and my vision is blurry and my head hurts. My fatigue controls my life. I work out every day, I eat very healthy, though my diet is limited, and I make sure to, of course, stay hydrated with electrolytes, though we know what a struggle this is. Any suggestions? Has anyone experienced such severe symptoms after surgery?

Hello baweebird. It sounds as if you have looked at the possible effects of diet already.  The sort of fatigue you describe could be down to any number of things which may or may not be related to diet. My first thoughts would be to have my blood pressure checked at the times of fatigue as both high and low blood pressure can achieve the same symptoms. Mine is low on occasions and the symptoms you describe fit it very well. The close second thing I would check is blood-sugar levels (possibly diabetes), which could present in a similar way.

I hope you manage to find a cause and are able to fix it.

Best wishes

Bill 

I think you should talk to your doctor and let him/her know what is going on so they can check into all the possibilities. Better safe than sorry.

I have had severe fatigue as well - however, everyone's situation is different. I have weekly blood draws to check my magnesium, iron, and calcium levels. Infusion treatments of Lactated Ringers (if I'm spelling it correctly) and iron have been required of me since my surgery. I'd check with your doctor and see if a full panel might show what you are deficient in and go from there with any supplements you may need.

K

Hi, I have severe fatigue quite often. It's always my potassium. I have a urostomy and a colostomy. Double whammy and my potassium levels drop about every two to three months. It makes your heart race, legs feel heavy, just all over exhaustion. It wouldn't hurt to ask your doctor. It's a simple blood test. It will play havoc with your heart. I hope this helps. Good luck and take care.

My Ostomy Journey: Kimberly | Hollister

In addition to what the others have said, you might be suffering from sleep apnea, completely unrelated to your ileostomy, especially since you say that you suffered from this before your ileostomy surgery. You should mention this to your doctor and be tested for it.

X_

You may want to stop working out/exercising. I don't know the reason for your ileostomy but in my case, my colostomy was due to rectal cancer. If you've recently finished chemo and radiation, plus your operation, get ready. I call it being 'chemo slammed'. Until all the radiation effects and chemo are out of your body, anything can happen--and it will. You'll have a great day followed by two days of 'why can't I move'...you may want to, but your body will not move. I have met several people, who in an effort to be "normal" again restarted their full workouts. This can sometimes set you back. I do what I can when I can and listen to my body. My docs tell me this is the best way--let your body heal and understand it will not be fast. Your surgery took far less time than your body needs to heal, including getting used to your now-missing parts. See your Doc, Ostomy nurse, and a nutritionist. This may need nothing but time, good nutrition and SLOW recovery. Our bodies are magic, but our minds race ahead at our peril. Keep us informed. I have been 'chemo slammed' at the worst possible times--there was/is nothing I can do about it except cancel any engagements, rest and let my body heal, not to mention my soul.

Hi!

I experienced fatigue that sounds very similar to what you are describing. For me, it was mostly pre-operation, but then that could mostly be due to the fact that I am wise to the causes now and able to keep things in check.

For me, it was extremely low iron that led to first iron infusions and then blood infusions. Also, major dehydration. The dehydration is the one that I watch the closest now that I have my ileostomy because that is such a big risk for us ostomates. Just when I think I've had enough liquids, I drink more!

Good luck with things!

Thanks, you're right, my extreme fatigue stems from low red and white blood cells during chemo. I had three blood transfusions and three of those painful shots that help create white blood cells. As I am barely six months out, I get over tired because I try to live my life as I did previously, but my body is not ready. As I watch my diet and drink lots (I have a colostomy, so dehydration is not such an issue). The best advice is to reclaim my activities slowly. As the months go by and I live reasonably, I'm feeling better, even stronger. Thanks again.

You need a full blood test -- it covers at least two pages of data -- then get the right vitamins or whatever to bring you in line -- I had this happen ... many pills and vitamins will not dissolve so you have to work with someone that helps -- I could not bring the iron up until the doctor found Centrum Specialist Energy had what I needed, and it is not coated so it dissolved well... within a few weeks I was doing much better -- you need the blood tests done at 3 months until they show good readings then at 6 months. Don't expect drinks etc. to give you the electrolytes -- my surgeon told me very clearly that I must always stay hydrated and salt must be high but control it by not cooking with it but adding it so you know what you are taking in. Sometimes I even have to wet a finger and dip it in good quality salt -- try coarse salt and different sources --

Thanks so much for all the replies, really helped a lot. I messaged my surgeon's office. My surgeon is 4 hours away and I need to find better care close by, which is very overwhelming trying to find especially since I'm such a "unique patient". Definitely need a full panel blood test. Think anemia is a definite possibility. Any advice on how everyone went about finding their doc? It's so frustrating trying to find a good doctor with chronic illness. Last thing I need is another pill pusher.

I would call your local hospital and explain what you need....if there is a doctor that leans toward your needs, it would be a good start.....then ask for a complete blood work.up and go from there....

I know now you can get the info on all doctors but totally sure the process ....I can ask a friend who was the head of Bellevue in NYC if you'd like

Probably low iron but I would get a blood draw.

Most people with ileostomies suffer from anemia and other vitamin deficiencies.

Personally, I drink the energy Vitamin Water and take chewable magnesium.

I understand what you are going through. I had my ileostomy (total proctocolectomy which includes removal of the colon, rectum and anus as well as closure of the anal opening) 14 years ago. Prior to this, I was very ill. All this happened in one year. I dropped down from 185 to 112. As a male, that is a big drop. Also, I was in the hospital numerous times due to illness resulting from a compromised immune system attributed to the large dosage of steroids. I also developed steroid myopathy. In essence, I became paralyzed from my waist down and was not able to walk. I was also having heart palpitations due to lack of sufficient nutrition. I also developed cellulitis resulting from a minor infection. I also became completely bowel incontinent. I held off on the surgery until I could no longer stand it. Weak as anything, not able to go to work or do anything. Also lost quite a bit of my eyesight due to the steroids. I was not able to function mentally as well as I should have and always very tired.

I had the surgery and remained in the hospital for 7 days. I had an excellent female colorectal surgeon and my gastroenterologist was female as well. She kept me going until I had the surgery. They all pleaded with me to have it. Chances are I would not have made it if I waited another 2 weeks.

I am telling you all this because the amount of time it takes to heal after surgery is dependent on how you were prior to surgery. Also, everyone is different. It was an exhausting process just to take a shower, even sitting on a shower chair. I just had to sleep afterwards. I just couldn't move, think, or process anything. I was not allowed to return to work, which even if I tried, would have been an impossible task. I had to be placed on disability. I also had to wait until I was slowly taken off the steroids before I was able to have the cataract surgery for both eyes. It took nearly 2 years to have complete strength in my legs as a result of the steroid myopathy.

I am telling you all this because, as I said earlier, I want you to realize that it takes quite a while to get back to things depending on how you were. You need to keep pushing slowly, then faster. I ate as much as I could. A typical breakfast was 3 eggs, noodles (for more protein), and cottage cheese (more protein and calories), 2 pieces of toast. I also had the milkshake drinks that contain many vitamins and minerals during the day (about 4). Lunch was about the same, and my wife would bring home two cheeseburgers with fries for a snack. Dinner was fish with vegetables. All this was consumed after I was on a restricted diet for several weeks to let everything heal. Yes, I was emptying the pouch many times due to my eating and the small intestine becoming more involved in the digestive process.
My focusing and thinking took some time, and my tiredness took time as well. It requires work and patience.

It took me several years before all was just about back to normal. My doctors "forced" me to take a trip, which was difficult. But the trip, which turned into an exercise (difficult), also exposed me to a great deal of nature which was quite intriguing and relaxing. It was difficult, but I proved to myself that it can be done. I also learned how to do the changes in "strange" places, not just at home.

I spoke to a nurse who works with patients that were compromised prior to the surgery, and she said that it is not uncommon to take this long. She herself was an ostomy patient that was compromised, and it took her quite some time to get back.

You may heal faster than I did, but I just want to let you know that it all works out. I thought that you may be able to relate to my process, and my success may help and encourage you. I know it can be depressing at times, but don't let it get to you. I also went to group meditation sessions. Really helped. I also went to a psychologist for help to overcome my emotions and the healing process. All this helped. I have helped many individuals over the years. I feel it is somewhat a payback since I had about 25 ostomates (some of whom were doctors) who gave me advice before my surgery.

One important thing to remember, before you try to do anything new such as a trip, food, how much to eat, exercise, taking vitamins, ANYTHING - SPEAK WITH YOUR DOCTOR FIRST BEFORE YOU DO IT. What worked for me as far as eating and exercise (which I did) may not be a good approach for you. I always obtained the doctor's approval - surgeon as well as gastroenterologist.

I just want to tell you about my background prior to and after the surgery since they were somewhat similar - you will overcome this and really feel great.

Hi, mine will be on Thursday. I have not felt like eating in a long time. Energy vit water sounds good. Thanks.