Long, hot summer (and staying hydrated with an ostomy)

I’ve been having a bit of a rough summer. Actually, that’s probably even too strong of a word for it. I honestly don’t really know how to describe it. I’ve been feeling fine, I haven’t had any Crohn’s or ostomy issues. I’ve just been pretty tired. Too tired to wake up in the morning and go for a run. Too tired to do a whole lot of extra activities. Every morning it’s a fight against my alarm.

I don’t know if this is the case, but I feel like it’s related to my hydration, which has been… pretty dismal. I’ve written on here before that I’ve been having hard time staying hydrated recently. It is always a struggle for me, but for some reason, over the past few months it’s been even harder. I do my best to drink 3 liters a day, but that is a really hard thing to do every single day. And honestly, I probably need to be drinking even more than that, but haven’t worked up to it yet. But even on the days I do drink that much, I still wake up in the morning feeling dried up and often dealing with a headache, which is another reason getting out of bed has been hard.

water bottle hydrate hydration liquid h2o drink stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy ileostomy stomaI wish I knew of a way to fix it. Believe me, I have tried lots of stuff. I flavor my water, I try to spread it out during the day. I have an alarm that goes off every hour to remind me to drink 8 oz. I drink electrolyte drinks–not the sugary ones, I stick to ones that have the good stuff with out all of the sugar (DripDrop or Nuun are good options). They definitely help and I would drink more of those but it starts getting really expensive after a while. And still, it just seems like no matter how much I drink during the day, it’s never enough. And I not only have to worry about my everyday health and all of the things in your body that require water, but I’ve mentioned before that my ostomy output is very thick and if I don’t stay hydrated, I can easily get leaks or blockages.

And that’s not even taking in to considering how annoying it is to have to run to the bathroom every 15 minutes. I finally had gotten away from having to run to the bathroom all of the time when I got my ostomy, but apparently I have not. It’s just really inconvenient when you constantly feel like you have to pee.

I have to believe a large part of my issue is due to the weather this year. I live in the South, so I’m used to the heat. In fact, it’s been a fairly mild summer compared to years past, but oh my gosh, the humidity this year has been insane. And I think it’s just hit me hard.

Unfortunately, I feel like the only thing I can really do is just keep trying. Even though I feel like it’s not getting me anywhere. And I am someone who really loves the summer and the warmth and the sun and I hate to feel like I’m wishing it away… but I’m kind of ready for the air to dry up around here.

24 thoughts on “Long, hot summer (and staying hydrated with an ostomy)

  1. veganostomy

    That’s a bummer 🙁 Hydration (or lack of) really hits me too and I immediately feel better after replenishing my fluids.

    What’s helped me is to eat a lot of water-containing foods – tomatoes, cucumbers, celery, oranges, apple, mangoes, greens (yes, even iceberg lettuce) and watermelon. Because these foods come as package deal, and are not just fluids alone, they tend to keep me hydrated longer, even if I’m not drinking anything during the day (I use urine volume and frequency as my guide). Similarly, I don’t eat “dry” foods very often.

    That said, the electrolyte drinks help me, but I use stevia sweetened (no sugar, no artificial sweeteners), so it’s not acting as a diuretic, like some products do. It’s too bad that you don’t find those to be at least helpful. 🙁

    Reply
  2. Renee

    I know exactly how you’re feeling, living in the south has its diffIcult times. If you’re eating fruits like melons and watermelons, the sodium thats in the fruit is help retain water. So when munching on fruit, chase it with water. I’ve also started nibbling on pretzels, which helps me get a big glass of water or two glass down very easily. I’ve been told to watch my eletrolite balance, so gatoride is another liquid i’m getting down,atleast one glass a day. My surgeon was saying thats actually more important than water (water is just as important) but that could be another reason you feel fatigue and having headaches. Hang in there!!

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  3. Amber

    I totally feel you on this! In fact, I have had to go to the local infusion center several times, including today to get some fluids and potassium. My GI doctor told about the World Health Organization website that has a recipe for making your own rehydration formula. It doesn’t taste the best, but that may be cheaper than having to buy all the Gatorade. One reason I am looking forward to going back to the ileostomy is because of how high output my Jpouch is, this post scares me a little, but for some strange reason it was always easier with the ileostomy to stay hydrated…hoping it is the same this next time. Yay for FALL!

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  4. SARAFENIX

    I was pretty proud of the fact that I drank two liters of liquid a day. That was, until my doctor said I should be consuming four liters a day. All liquids count. Cup of coffee, juice, water and non’caffeinated colas. I mix it up quite a bit and do find that if I don’t quit consuming large quantities of liquid after 8PM so that I don’t have to make a potty run in the middle of the night. I also consume a great amount of ripe fruit and the juice of that counts also. I don’t know if you make smoothies, but I use non-fat almond milk in them and that also counts. I did discovered a new fruit from the woman at the co-op called a pluot. (a combo of plum and apricot) which is wonderful.

    Reply
    1. Christina

      I’ve had CD for the past 4 years and had my first resection in November. To stay hydrated I use Pedialyte powder packs. The box comes with 8 and I get it at my local target for $8.99. The box comes with 4 flavors and I throw one into a water bottle and feel like I’m drinking Crystal Light. Definitely helps with my hydration. Good luck!

      Reply
  5. Lori

    Just celebrated my 9th year of having an ileo and like you, this summer I’ve been having unexpected issues with hydration. I am normally not an outdoors person but this year I’ve taken to being out of the direct shade and as a result have sweated more than I’m used to. I always take water with me on such outings but it was not enough. I dabbled with electrolyte beverages and such when I realized I could simply take magnesium and potassium supplements–nothing fancy–just standard stuff in the vitamin aisle at the grocery store. It has made all the difference!

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    1. Melissa

      Hi , after my surgeries I had the same problem with each surgery making it worse. I now have short gut where now I can get little to no hydration by drinking I now get IV. But I was able to talk to a dietician that worked a lot with mal absorbtion. She helped me figure out different fluid recipes to help get hydrated, but the easiest thing is pedialite. Water is good but you can dehydrate yourself (as a crohnie) because it goes right through us flushing essential electrolytes, potassium, and magnesium which help not only absorb but retain the fluids your drinking. Talk to your dietician not only about your food needs but also about your fluids and hydration too.

      Reply
  6. Sheri

    Hi,
    Since moving from the Pacific Northwest to North Carolina, adjusting to the climate with an ileostomy has been hard. I finally found a rehydration solution that has seriously saved me. It has not only helped me stay out of the ER for IV hydration, but I feel like I can go through each day without feeling lousy and struggling to keep up with my water intake. On top of that, we have to try and balance with foods that cause more output…what a pain. Anyway, it’s called Ceralyte. And it’s not cheap by any means, but works far better than anything else I’ve used (sports drinks, pedialyte, homebrews, etc). I have found some on Amazon that has cheaper shipping then going directly through their website. It a rice based electrolyte replacement, and works wonders. There is a lot of information on their website about it, so please read up for yourself and determine if it is a good solution for you. I have started stocking up on the stuff. Now I empty several packets into a small mason jar and keep it with my. When I fill my water jug up, I put a teaspoon or so in my water to help me stay consistently hydrated. If I get extremely dehydrated (rare now that I have found this stuff), I will use their most potent solution and go full strength (It comes in 50, 70, 90 strength). Otherwise, I improvise because of the cost. I know I sound like a commercial for this stuff, but truly I found it by mistake and have been grateful ever since and want to make sure other ostomates know about it too.

    Reply
  7. Lauri

    Thanks for the blog for ileostomates. I’ve had mine for 20+ years and from the get-go, it changed my life for the better! No more emergency bathroom runs, and all the other frustrations that came with having ulcerative colitis for ten years. For years, I had no issues with my ileostomy
    and could eat anything. However, lately, I am having more issues.

    I have been dairy-free for years and am now gluten-free and low sugar (only Stevia) for five.
    That has given me great relief.

    My latest issue is what I term “blow-outs” in the middle of the night. I am convinced it is due to a food blockage, but can not always figure out what it is. Is anyone else experiencing this, stoma
    retracting and stool leaking? I ended up in ER for the first time, as the stoma was retracted for four days. This also gets very expensive in changing appliances so often.

    Reply
    1. veganostomy

      Hi Lauri, my stoma will retract in waves when there’s a hint of a blockage – if I let it continue for days, then I will get a blockage. Not sure if that’s the only reason why it would retract, but it gives me an early warning!

      Reply
      1. Lauri

        Hi veganostomy:

        Not sure what you mean by waves? Besides nuts, seeds and obvious blockage foods to avoid, I’m sure I need to hydrate more and more! I have also found that eaten by 7 p.m., a great rule for everyone, helps give my body time to move prior to sleep. 🙂

        Reply
        1. veganostomy

          By “waves” I mean with peristalsis, like when your gut contracts. If you’re wearing a clear pouch or have your pouch off when experiencing this retraction, you’ll see these “waves” I’m talking about.

          And yes! HYDRATION is very important!

          Reply
  8. Colette

    I am a serious fan of sweet tea, but found Crystal Light Sweet Tea. I can drink it all day without the sugar of the real thing.

    Reply
  9. Nancy Dahood

    Hello – I just celebrated my Stony’s (stoma) 1 yr anniversary. Then 5 days later had to have a second ileostomy cuz the first one he did got infected, I had been constipated most of the last 46 years – since the birth of my first child. Every dr I went to said that there was nothing wrong, well on 8/31/14 my colon ruptured and to say the least it has been a long road. I really am quite happy with it – the dehydration thing hit the nail right on the head. I sleep well and am still so tired everyday. I live in New England and the humidity up in my neck of the woods has been pretty bad. I feel like no matter what, I am tired. Trying to exercise as much as possible, just bought an exercise bike – I also had total knee replacement 3 weeks b4 colon burst. Could go on and on but won’t – very glad <3 I found this site. Prayers for all and pray for winter lol

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  10. Natalie

    Ok, 14 years after my colon was removed I was told only the colon benifits your body by drinking water. Mine was removed. I drink gatorade, lots of it. Once I have at least half a gallon then I can drink something else. During the summer I want more gatorade. Other good choices are coconut water, suppose to be great hydrator.

    Reply
  11. K

    Hey, I don’t have much experience yet… but carbs to slow things down and rehydration solutions work for me. I buy them at the pharmacy, but it’s cheaper to make it at home: http://rehydrate.org/solutions/homemade.htm They’re with a little bit of sugar, but that’s what makes them work for me. I try to sip tiny amounts continously from a bottle… and stay as cool as possible, cool showers, shade and take a fan with me everywhere I go.

    Be wary of drinking too much plain water, that’s what messed things up for me. In my case they said at least 1 litre of my fluid intake should consist of some rehydration solution, either homemade or bought. And my dietician did specify I shold make sure to mix one with sugar if I made my own. Do you have access to a good dietician? I had to try 3 different ones before I found one that was of any use to me.

    Hope this was of any help to you.

    Reply
  12. Dawn Rosenberg

    I’m a newbie as I’ve had my permanent ileostomy for a bit over 5 months now. I definitely find that at times I can be more parched and dried out than I’ve ever been in my life. I also work out extensively and have always sweat like a man (no offense to any guys reading/responding to this post) but have never been concerned with hydration until now. With that said, I tend to be very mindful of drinking plenty of water by having two blender bottles filled with filtered water wherever I go. I take one out and I nurse it and when I’m done I go through the other bottle (I also tend to get many comments regarding the extra water, which I’ve learned to ignore) When emptied, wherever I may be, I will fill them up again, and if there is no place to fill them up, I will just purchase it. The day following my surgery, I began drinking plenty of coconut water (I brought it with me to the hospital beforehand), and I drank that for most of the time interspersed with water to get my body used to having extra electrolytes. Once I returned home, I would go through a liter of coconut water every two days again, interchanged with water. Now I average about one cup a day of the coconut water. I also purchased an electrolyte powder called Ultima Replenisher. I found it in my local health food store (I live in Manhattan, NYC) and I’ve found that it works great for me and is completely natural with nothing artificial. They also sell it on Amazon for about $26.00 for a 90 servings. Each day, I make sure to have one serving of the electrolyte, and on the days I work out I take two portions while I am exercising. Plus, I agree with Veganostomy in the sense that eating plenty of foods containing water is a great idea and a natural, healthy way to get extra water into your system. I also tend to have one banana daily, in addition to eating many nut butters, which I find helps, and I add a bit of himalyan salt to everything (these are things I never focused on before my ileostomy). I also drink 8 oz of water with one squeezed lemon in it first thing most mornings. I too, have very thick output and I notice when I am mindful and diligent with my liquid intake it helps thin out my output to a reasonable consistency. Anyway, I realize that it can become very humid in the south so you have that extra hurdle to deal with but it became very humid here in NYC as of late, and I tend to not use A/C, and have found that although I could be a bit more lightheaded and tired at times, by doing all of the above remedies, it has really helped out tremendously. I realize that it’s a huge chore on top of everything else that has to get done in life, but at least for me, it has been worth it so far. I hope you find a combination of things that can work for you. Anyway, you have a great site here and I’ve learned a lot from you and from Veganostomy. Thank God for people like you who are able to really put it all out there! I am very grateful for you guys!

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  13. Amy Oppeau

    I am you!! I try so hard. I do find so help adding Ceralyte to my powerade. It was suggested to me by Mayo little packets full of what’s like pedialyte for adults. The other change that happened in the last three weeks that was a game changer was a visit to an endocrinologist. After years of on again off again steroids I learned my adrenal’s were burnt out. That turned out to be tightly woven to my electrolyte balance and lethargy. Including my ability to stay hydrated.
    I still have needed iv hydration about every 4-6 weeks with this 100+ degree heat but it was a game changer as far as my ability to get out of bed with dragging my body behind me. Took me two years to get to this point. No I’m not depressed, no I’m not sad, but something was off and I just knew it and kept advocating for myself! Just food for thought. Might be worth looking into.

    Reply
    1. Patsy Gazaleh

      I had that problem after my first surgery, which removed all but 1 foot of my colon. I knew I was staying hydrated. I found Smartwater which has electrolytes in it. There is no taste at all and I drink about 2 liters a day. This really helps. You can buy it by 6 liter bottles in a case at Sam’s Club. I go thru a case almost twice a week. I keep about 8 cases on hand. My doctor wrote a prescription for it and I take the purchases off my taxes.

      Reply
    2. Jerome Taffet

      CeraLyte has been like magic when I use it and also use kit properly. My osteomyelitis nurse turned me onto it. I use the 50 which one do you use?
      How often do you take ?
      Has it helped improve your energy and activity level?
      So sorry to hear that your adrenals aren’t working. That makes it more difficult. Anytime get in touch. Be well

      Reply
  14. Darrell Henry

    I have the same problem with the addition of chemo, which requires even more hydration. I have to have a minimum of 120 ounces daily. My weekly chemo labs have shown us this magic number. I run and during the summer months the number can climb to 180 ounces. The best way I’ve found to accomplish this is to mix up all the liquids I need to drink that day in the morning. It’s a variety of liquids in their containers, all sitting there to remind me what the task is. A bit like goal setting.

    Reply
  15. quillfyre

    I find winter in the north hard for hydration, although I fight it most times because I get distracted and forget, then try to make up for it in the evening. Does not work. In the warm months here, the humidity helps but I find as the air dries out in a closed-tight-against-winter house, the more pronounced the effects of being dehydrated.

    Reply
  16. Jerome Taffet

    CeraLyte a product made to prevent and decrease dehydration in the treatment of dysentery in Africa.
    It consists of rice based electrolytes and helps the body hold onto water better. I got it on Amazon
    When I use at least once a day it helps a lot. Twice a day, is the suggested dosing if remember I feel even better. I’m grateful to the osteomyelitis nurse who recommended it. Hope it helps anyone. Good luck!!

    Reply

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