Hi everyone. 2 weeks on from surgery. Days are up and down. Only been able to keep my food down the past 2/3 days. It's only been baby portions throughout the day. My back is still painful. I keep thinking there is something wrong. Is this really normal? I've lost 1st7. Yesterday I couldn't get off the sofa, today I'm ok but when I walk I get out of breath easily. The stoma nurse was in shock when she saw me, she changed the type of bag and also advised Imodium so things can start thickening. It's quite possible I get worse through the day with tiredness and backache! What was everyone else like? I also get cramps with rectal discharge on some days. (TMI) This is stage one of 2 stage op. Xx

hi Katerina, glad you've updated but sorry to hear your condition. TBH it sounds remarkedly similar to my own so soon after takedown. I was in and out of hospital for the first few months with complications from dehydration. Best advice I could give right now is to stay firmly positive...it does get better. And keep an eye on your hydration especially if output is very fluid and plentiful. Also, passing 'stuff' from the back passage is, I believe, normal. I passed huge amounts of free blood which no-one ( except myself) seemed the least concerned about.

onwards and upwards......

I think I am dehydrated. I drink and my mouth still feels dry. I also don't produce enough spit to break down bread in my mouth. The only thing that has helped with that is sucking on a boiled sweet. What do I do? I guess I could drink more but i feel like with too much fluid I'm going to be sick!! Xx

hi Katerina . I'm no medical expert but, to be brutally honest, if you're dehydrated you cannot fix it yourself. Drinking more fluids will just flush your system making you more worn out. Try electrolade/ dioralyte sachets but the only really effective method is IV fluids administered in hospital. If you suspect dehydration I strongly suggest you see your GP or contact your specialist nurse asap. Don't let it get too bad. A few bags of fluid can work wonders.

onwards and upwards...

Thanks Hun. Will see how I am for the rest of the day xx

Hi Katerina, 

thanks for update but sorry you're struggling so. The first weeks were tough for me, adjusting food, liquid and meds as your body adjusts as well. I also needed Lomotil to slow things down. As others mentioned must watch dehydration-Gatorade or Pediacare could help unless it's severe and you need medical help. Hope your surgeons office is responsive- I was extremely lucky to be able to call or email and get quick response. For your dry mouth, that is not unusual after surgery. Are you in any antibiotics? These or other meds can cause it. Biotin mouthwash is great for dry mouth! Swish 30 seconds, spit out but don't drink anything for 30 minutes to let it work. Use 5 x day while you have this need. I don't know what to say about your back pain- didn't have that. Perhaps because of time in bed? Hope you're feeling better soon! Stay strong and know it will get better!

laurie

Thanks Laurie. I was on anti biotics for a uti last Monday for 3 days. I've had a better day today, I just get really tired after a little walk. I will try what you have advised! Xx

So, if I'm right in thinking you now have a loop ileo, then all of this is par the course, especially the dehydration.

Way back at the beginning of my UC, I did the boiled sweet thing too! But it really doesn't solve the underlying problem so as people have advised you may have to be re-hospitalised and put on a drip until you're okay, or you can make your own hydration drinks. I found the hospital-provided electrolyte powders disgusting so I bought some Nuun tablets from Amazon and drank pints of that for a good month or so until I felt back on top of things.

You've just had major surgery - relax! Your body needs time to recover and your mind just has to be patient 

Thank you GB2014, I am feeling much better now. Still not quite there as every evening I weirdly get a pain on my left side and I can't walk for very long! Slowly getting there xx

The loop ileo. was definitely more difficult than the end ileo.    My surgeon prescribed Lomotil, 4 times. a day, with each meal and before bed.  It also took a while to be able to take my daily walks and by the time I started to feel pretty good, I had my next surgery!  About 6 weeks.   Hope things improve soon for you.  It does get better!  

Hello, Katerina. Try any kind of canned soup. It has a lot of sodium and might help keep fluid in you. Or make your own potassium broth, or vegetable stock to drink throughout the day. I drank gallons of homemade broth, and ate egg, cheese, almond butter for protein so my tissues could heal.

My first four weeks after the 1st surgery my back ached so much I could barely lean over the sink while brushing my teeth. For me, it was because my abdominal muscles were so sore. I walked hunched over all the time and could not straighten up. My back needed my abdominal muscles to stand straight, but those muscles and the incision were trying to fuse together and heal. I also was out of breath all the time, and struggled to finish a sentence, as if I had no air in my lungs. After a few weeks it started to get better. I think everything depends on the abdominal muscles healing. You use those muscle for almost everything, even reaching for a book. Go outdoors and walk as much as you can manage it. Try 10 minutes out, turn around and 10 minutes to get back home. Twenty minutes! Walking around the house did not work for me. After three weeks I managed to go on a shopping trip by myself without fear of falling over. I was regaining my strength. I had funny aches, pains, sudden shifting sensations inside, but it all got better after two months or so, and now at six months after takedown I can go anywhere, no back pain, and eat anything (except citrus fruits or spicy which burns on the way out). Pouchitis from time to time, but cipro makes it go away, and I watch sugar intake. You will get better, day by day, you will see. Try the broth.

Post op is different for everyone but there are so simple steps that I follow. Keep a heating pad handy. If you 

Keep a heating pad handy for immediate relief. If you don't have one, then fill a clean sock with raw rice, make a knot in the top and pop it into the microwave for about 2 minutes (you can gauge the time needed by adding a few seconds each time until it is hot enough for you) then put it behind your back where the pain is...instant relief. 

I like powdered soup mixes...you can get them in big tins or containers...just boil water and throw a tsp into a mug...makes for a nice, satisfying drink...keep a pot of cooked rice on the stove and add a few tsps to the mug of broth...it works wonders...thickens things up and gives you the sodium that you need.

Rice water is very helpful (tastes horrid but works magic)...do not rinse your rice before cooking, when cooking your rice, add twice the amount of water that you need, then once it is cooked drink a few tablespoons of the rice water...it is full of starch and a great thickener.

I like my lemonade mix to quench my thirst. I mix fresh lemon juice with honey, a pinch of salt, water (I use Brita filtered water but you can use whatever you like) and some fresh mint leaves for taste. It is very satisfying, you can drink it cold or at room temp and it helps keep your electrolytes up.

If you own a quick blender (they sell small bullet shaped ones or you can use a hand-held immersion blender...They work great and do not require a lot of mess to clean up and they are cheap...just plunge them into any pot or bowl or pitcher).

I cooked a lot of frozen veggies like green beans, squash, sweet potatoes or just plain potatoes and blended them with a bit of water or milk, added grated cheese (helps with the salt intake) or parmesan cheese and made myself some really satisfying meals that way.  Just make sure that the bowl or pot is deep enough so that the stuff doesn't fly around when blending.

For the walking, it just takes time. Post op you feel like you are 90. No strength, no breath, no energy. Then it comes back slowly.

Just do a tiny bit more each day than you did the day before. Do not have high expectations.

Do not get disappointed...there will be moments when you just cannot move or get up or have accidents. It happens. 

I put down blue pads onto my bed, on top of the mattress, under the fitted sheet and on top of it...covered it all with a fresh towel. Maybe it was overkill but at least I did not stain my mattress (much)...and I felt safer. 

You might need to sleep with a pillow under your knees to relieve the tension on your lower back. Or under your legs...it helps a lot...I still do it years out from surgery, it is the only way that I can sleep.

It is way too soon for you but eventually, the big, inflatable pilates balls are great for getting your abs back...they also help to relieve back pain and strain...and you do not need to be an expert to use them...just look up some moves on the internet...but not before  3 months post op at the soonest.

Jello, lolly pops and jujubes or twizzlers were my friends too...comfort food for when I was so uncomfortable.

Hang in there

Sharon

Hope you're feeling better Katrina!  Its a long healing process and takes a while for the body to readjust.  I hope you've been able to find a balance with the hydration issue.  It's good to not drink too much liquid with meals and in-between sips of things like smart water or vitamin water has helped me find a balance.  Wishing you well

Thanks Joel. Hydration is fine now. Slowly getting there xx