4 weeks post surgery and having issues

So I am four weeks post surgery from my ileostomy. I have been having a lot of dizziness, fatigue, headaches, rapid heartbeat  and nausea. I am slightly anemic but they just want to keep an eye on things. The rapid heartbeat is making me feel very out of breath as well which is kinda scary. I have been drinking an electrolyte mix I got off Amazon along with vitamin water. My issue is when I drink this is makes me very nauseous and I usually throw it right back up. Which is really upsetting because before surgery I was throwing up everyday so I really hope this is just because I'm still healing. I'm taking chewable vitamins but I noticed when I take them I have increased liquid output so it's almost counter intuitive. Has anybody else had these issues? Will it just take time? I feel really crappy but I'm being told to just be patient and wait but after the struggles I had to go through to get to surgery my patience is almost non existent. I'd just like to know if I can do anything here at home to help.

I used to have an ileostomy and had a lot of trouble with dehydration, which this sounds like. The electrolyte / vitamin water approach seems like a good way to go; have you been offered any anti-nausea meds at all? At the time I had my ileostomy I was also going through chemo, so they had me on all sorts of anti-nausea medication which helped me keep hydrated. I started getting better once I kept on top of making sure I was drinking enough water / electrolytes. Even with out the electrolyte mix, just getting plenty of water may help (if that doesn't make you nauseated also).

I'm sorry you're going through this and I hope it becomes manageable :/

I do have phenergan but I have been on it for over a year now and I don't feel like it is working anymore. I'm trying to just take small sips and not try to chug a bunch all at once. I did get potassium infusions that seemed to help but my surgeon has told me to contact my primary care doctor with anything else so I don't know that I can get the infusions from her. I definitely think it's a combination and I think I'm kinda getting crashes from drinking the mixes I'll feel good for a little bit then huge downturn. I know some people with ileostomies go in for regular hydration infusions and I think I'll message my primary about that if things don't start improving. 

I'm sorry to hear you are feeling so poorly. The only thing that jumps into my mind is that perhaps you should be checked for a UTI, common after surgery. Your visiting nurse can bring your urine sample to the lab. 

I hope you feel better soon. 

Hi Miss M,  Sorry to hear you are having such a hard and scary time.  I think you should talk to your doctor about the rapid heartbeat, as that sounds like it could be something to worry about.  The other symptoms, the fatigue, headaches and nausea, are all things I experienced when I first got my ileostomy, and I started drinking the electrolyte solution that was recommended by the hospital.  It had a lot of sugar in it, as many of them do, especially things like Gatorade.  I felt miserable and my doctor ran some blood tests and discovered that my blood sugar was high and my liver enzymes were elevated.  I would check the amount of sugar in the solution you are drinking.  How much of it are you drinking?  Once I eliminated the sugar, everything went back to normal and I started feeling way better.  Not everyone can tolerate that much sugar, and it's not necessary anyway.  It's only added to make the solution more palatable.  I don't mind drinking slightly salty water.  I take a multi-vitamin, as well as K2 and D, as recommended by my doctor.  I drink lots of lightly salted water and other fluids throughout the day, including plain water.  I've had all my blood levels run recently and everything was good. Good luck, and let us know how you progress.

Terry

I'm not sure how to help, but I'm sending good vibes your way. Everyone is so smart, and funny here. You're definitely in the right place. ❤️❤️❤️

Hi There Miss

Four weeks is very early in your recovery, you dont say what state you were in pre op, meaning are you trying to get over the Op or your condition and the Op.

I didnt get out of hospital for 2 months just to start with. You seem to indicate the drinks may be the problem, thats an easy fix just substitute for something else and compare results , try a few days without the vitamins and compare.

Its not a good idea to make your food pass through any faster than it probably is at this stage.

As posted, if you take an electrolyte drink try to steer clear of the sports drinks loaded with suger although your body could probably do with anything it can get at the minute, just go cautiously and make sure you are taking a good quantity each day.

I made this drink up daily and it worked very well for me and still use it now and then.

https://www.stmarkshospital.nhs.uk/wp-content/uploads/2014/05/High-output-stoma-2014.pdf

It is commonly known around these parts and it tastes ok to me.

You also dont mention any food you are eating, make sure its quality and go gently until your new system finds its way.

I lived on baked beans, burgers, eggs and softer vegetables all day every day at the start to get some strength back,..... good times !!

It is all about you now, let your health come to you, dont rush it or over think it, you wont do yourself any favours.

Take care and update your progress.

Axl

Hi Axl,  Lots of good advice here.  I do notice that the recipe on this link for the electrolyte solution calls for 20g or six teaspoons of glucose, which is sugar of course, in a litre of water.  That is quite a bit of sugar.

Terry

After surgery your body will be all over the place on your vitamins and minerals, and dehydration is going to be a issue. From what you showed that your doing, be careful on some of the powder drinks that some places sell as they have high sugar and other things that can cause their own issues. Double check if some of the stuff your taking has a high vitamin c level as to much will run liquid right through you. Also check your getting enough b12 as it is a water soluble vitamin that might be hard to absorb, check into vitamin B12 deficiency anemia. Some of the things your describing I went through and found that was one of the things I was lacking. You can get labs done on a regular basic to see how your body is doing to see what is lacking. I get checked every 6 months through my health care check up but post surgery they might do it to get you balanced out. 

Research water soluble vitamins and you will get a list of ones that without a large intestine might be harder to absorb. 

A good trick I learned because I am working outside and do alot of sweating is to add 3-4 peices of rock salt that they refill salt grinders with to 1 liter of water. You cannot taste it but it does make a difference on low sodium levels.

Your still early off from just having surgery, make sure your eatting, they will have you on a low residue diet which is stuff that digest easy and can pass thru without causing a blockage as your intestine is swollen and smaller then normal right now.

Great time to enjoy things like pasta, ice cream, avocados, and mash potatoes. 

Hope this helps.

Hi del

yep that's true ..but it's a well known rehydration solution around the world when recovering but not a permanent daily drink,  cheap and easy to make at home, help get your on your feet when needed. By comparison a 600m of Gatorade has 9 teaspoons of sugar and there is 6 in the 1000m of St marks solution, as usual knowledge is the key with these things.

Axl

Hi Axl,  You are absolutely right.  I just wasn't clear that you were recommending it as a temporary or stop gap solution, not a permanent one.  My bad for misunderstanding your post.  I think that many people, when sent home from hospital, are given the impression that they need to drink this kind of stuff forever.  I know I was!  Thanks for pointing that out.

Terry

A little more Terry, glucose and sugar have different chemical properties, glucose is absorbed faster by the body giving instant energy where sugar doesn't, which is why they use it on the St Marks solution. And yes a colorectal doctor noticed I happened to be drinking a Gatorade type thing when I was in there early days and he said make sure you keep drinking that... hah

Yes, and one of the most frustrating things is the conficting information you can get from different medical professionals!  They are sure not all created equal and you have to be careful what advice you follow.  The recipe for the hydration solution I was sent home with was pretty much the same as yours, and I drank it diligently for probably three months, in the amounts recommended on the paperwork they gave me.  I felt like crap and started to gain weight, but what do I know, this is what the hospital recommended!  One size just doesn't fit all when it comes to these hydration solutions, and yet they give the same recommendations to some big 200 lb, 6'2" guy and they would give to me, at 95 lbs and 5' 2".  After my doctor checked my bloodwork and found my blood sugar and liver enzymes as elevated as they were, he said if I had continued on this path much longer, I would have ended up prediabetic and with non-alchoholic fatty liver disease.  Pretty scary.  Eliminating the sugar from my drink made everything go back to normal within a month.  Now, I guess I'm a bit obsessive when it comes to sugar, but that really opened my eyes.  Unfortunately I have a sweet tooth!  I still do have little dark chocolate every day, I mean life has to worth living, right?!

Cheers,

Terry

Hi Miss M!  I really am concerned and sorry to hear of your situation. The condition of rapid heart sounds like Tachycardia. If you are stressed or nervous it can cause this condition. See your GP and he can probably prescribe something for it. Also I would recommend seeing a Gastro and/or ostomy nurse. They can let you know any diet you should be on until you are feeling better. It is very important to stay hydrated and electrolytes are  good but not necessarily the answer. I am confident things will get better for you if you take these few steps. Mike

If you haven't already seen your doctor or medical person do so! It sounds like you may be having a n episode of severe dehydration. I know how that feels. I had my ileostomy in 2018 in the midst of a very hot summer. Also have CKD. I had quite high liquid output which I couldn't keep up with. Too much intake of water /electrolyte drinks caused a GI flush effect! Wound up in hospital with IV fluids for 4 days. I had gone into kidney failure, and thankfully the fluids worked

Now I am very careful of how I feel and let (occ push) the docs to pay attention. 

     Your experience sounds absolutely awful. Thank you for warning the rest of us before we wind up in the same situation. I'm so glad you went to be seen, and prioritize advocating for yourself. It's not always easy when you're telling the professionals what you need. ❤️

So sorry to hear you are suffering, and hope you get to a better place soon. It is pretty awful post surgery! Just a word about the St Mark’s mix mentioned elsewhere. I had a internal pouch removed and an ileostomy formed due to changes in the pouch. This means I have shorter bowel, and was prescribed St Mark's Mix. It was explained to me that the mix is an Oral Rehydration Fluid to aid absorption of electrolytes and glucose is necessary in the process. To quote:-
"Patients with short bowel have a disrupted fluid and nutrient absorption process leading to excessive fluid losses (6). Hypotonic fluids such as tea, coffee, plain water, and alcohol or hypertonic solutions such as carbonated drinks and fruit juices should be limited. Drinking hypotonic or hypertonic fluids will lead to sodium and fluid moving from the body into the intestine which can lead to increased stool output and result in net fluid and sodium losses (3;7;8). This will result in a high output and sodium depletion. Isotonic fluids are glucose-electrolyte solutions which optimise the ratio of sodium to glucose and allow greater fluid and sodium absorption across the jejunum (5;9). The glucose present in the intestinal mucosa promotes the passive absorption of both salt and water via a solvent drag mechanism (4;9). At least 90mmol/L of sodium are necessary to maximise the water and sodium absorption (5;9)."
Although this is not your situation, the glucose is part of the way it works, and not purely for taste (St Mark's mix doesn't taste great - you can add flavouring)

Kindest regards

I sure hope you're feeling stronger, keep advocating for your self; make the DR address the heartbeat. I was in the hospital for a few months after mine. I would recommend some soft food for the gut. I like papaya with some lime juice and a teaspoon of sugar. 

Glucose is a type of sugar. They aren't two separate things. :)

Hi Miss M..not sure if you are still experiencing the issue with dehydration. If you are, I highly recommend DripDrop. It was recommended by my dietician and the surgeon. I have ileostomy for the second time now. It took me a long time to adjust to it the first time as well. My recommendation is take one day at a time and experimenting with different food and your body will definitely let you know. All you have to do is listen and learn from what it tells you and you will be fine in couple of months. Definitely patience is needed. I know it's easier said than done.