Asa Lay, Thank you for the verse, needed that !

You're welcome. It helps me in tough times....

Great to hear that you are starting your first step!  The nurses on the floor are great!  Good luck!

Remember that it is going to be tough in the beginning, but things will get better.  Keep clinging to the hope of your faith to give you the power and strength in the days ahead.

Best wishes to you and prayers for a speedy recovery! It takes time but you will get there with some good days and some bad. 

Try not to worry about what is ahead. Accept that it's going to be a bit rough, so you'll remember to be patient with yourself and the team. You're in the physical hands of your surgeon and the nursing team now. And they've done this many times. Rely on your ostomy nurse because he / she will teach you how to care for and change your temporary bag. When you wake up from surgery, you'll have all manner of tubes, bags, and maybe a catheter for urine, sticking in your body. Remember that as each day passes, a tube will be removed, until you're no longer tethered to anything. Freedom! You'll only have the ostomy bag attached to you, and you'll become expert at changing it until you have your takedown surgery. Did you pick up a plastic bidet bottle? I packed mine for the hospital stay. That bidet will be your best friend in preventing Fire Bum. I also packed a pair of washable (or just dispose of) flip flops for walking (shuffling) around the hallway. Best wishes.

Thanks, everyone for the encouragements! And thanks Winterberry for the bidet idea! I'll just have to keep my head down and plow through. I'm thankful I've got Irish blood in me....it will help to have a bit of stubborness to get through this...LOL

Hi Asa

Not sure if they will have these when you are at Yale, but they gave me a package of soft white disposable cloths.  They really helped with cleaning the skin around the stoma.  They gave me extras to take home.  If they still have them, see if you can get an extra package or two,  My Ostomy nurse who came to my house was great!  She was with Masonic Care.  I had three step so she came both times, for the two different stomas, but not for takedown.

I had my surgery at Yale New Haven and it was exceptional. The surgeon and nurses were great. Hope the surgery went well. Take care of yourself especially since the virus is going around. 

Asa Lay, hope you are doing well. Let us know how you are doing.

Aimee 

Asa Lay,

Thinking of you and sending healing vibes . Hope you are doing well.The first couple of weeks are difficult,  strange and at times scary and frustrating.  Reach for your faith . Ask for help ,ask lots of questions even if they seem foolish and let loved ones help . I know for me detrimanation, humor along with turning to God is what got me through the hard days .You got this .

You're going to feel much better once you get rid of the inflamed colon!  Try and walk asap after surgery (even the same day if you can).  The soonest walkers are the soonest released.  When you get home, make sure you sleep on a chux or some protective pad.   A nightime leak is annoying, changing and washing sheets is really a pain.  If you can, order your first stoma supplies before you leave the hospital, deliveries are slow these days, and you don't want to get caught out.  You'll probably need a prescription and to contact your insurance company. Update us as soon as you feel up to it. 

Developed a problem with chronic dry mouth from surgery onward. The last 3 days have been hell. Tonight will be the worst. Their limiting my fluid intake AND I'm getting a cold....at least I can rinse my mouth with water just don't swallow and limited juice amounts. If BG gets too high I lose the juice so I am limiting the amout....

And to top it off I'm getting a cold...

Hang in there Asa,  I know that can be a side effect from the anesthesia.   Hopefully it won't last much longer.

Oh no Asa, hopefully thing will turn around for you soon.

Aimee

Asa, 

Hope you feel better soon.  Take care of yourself!  We’ll be rooting for you.

Asa Lay , How are you doing ?  I hope things have improved for you . May the angel Raphael be at your side and help you heal . Hang in there , it does get better . 🙏

This is the Bible verse my husband wrote on a piece of paper for me before my first surgery. 

Sorry for the delay in my update. The first few weeks were hell for me. I got to a really dark place emotionally because I felt "abandoned" by the medical side because of the virus.

When I was in the hospital I was shown how to empty the bag but never really shown how to measure the stoma. I was out of it at the time and only remembered part of what was said.

The appliances they sent me home with were fine in the hospital but often leaked when I got home, which added to my despair. I had an ostomy nurse come for the first time it had to changed but my insurance changed and the new insurance didn't cover ostomy nurses so I had to get another company who only had a regular nurse who didn't know really anything about it. She even told me once that I knew more than she did. Great. Another thing to worry about. 

I asked for another nurse and they sent one that has experience and knows more than the others but still not enough. She contacted the ostomy outpatient nurse from the surgeon's office and we sent up a video call so I can learn how to measure and take care of the skin breakdown that had developed and they also sent new appliances, which I used for the first time last Friday. That one never leaked and lasted until the next change date. I just replaced it on Tuesday and so far so good. THAT helped me tremendously with my angst. 

After the new bag not leaking and the second one still looking good, I've turned a corner and I am very much relieved. The only problems I have now are my coccyx hurts but seems to be getting better and I am not sleeping all that much at night. Sometimes I sleep an hour and I'm up for several hours, fall back to sleep only to wake again. I seem to average 4 hours a night sometimes in a row, sometimes broken up. Taking melatonin to help and I try to sleeping during the day.....hopefully soon that too will end and I can get more rest.

Oh, by the way.....during my first week home....found out my next-door neighbor (duplex house) was diagnosed with Covid 19, adding to my anxiety that most prevalent, to begin with.....Thank God we didn't have any contact with her for several weeks before then.

How much sugar-free Gatorade can I drink without causing any problems with my blood numbers? In the hospital I was drinking so much water because I couldn't form my own saliva for 3 days, sent my sodium level way down....

Hi Asa, I was sent home from the hospital without any nursing support and my prescription for ostomy supplies was not filled.  So I had to learn to change the bag by watching videos and order free sample bags from every manufacturer to cover the gap in supplies.  Necessity is a swift teacher, plus a strict and unforgiving one.  

When I had my second ostomy (the loop) I had such a terrible problem with skin erosion I had to work from home for a couple of months.  It sure is painful.  

Glad you are on the better side of things now, it will get easier.  Lots of us had awful problems with sleep.  You'll go through that all over again when you get the jpouch.  But you will eventually work out a system you can live with.  Pain meds will mess up your sleep very badly.   I've learned to compensate by moving my bedtime earlier to help make up for the nighttime wakeups. 

As long as your kidneys are working I wouldn't worry about too much fluid.  But not sure about all the artifical sweetener.  You may prefer to add salt to food & drink more water.   

Hi Asa

Did they mention diluting the Gatorade with half water?  Sleeping for me was tough in the beginning as well.  And I did have some leakage, especially at night. I was lucky that I had a great ostomy nurse. She also ordered products for me to help with the seal of them.  I believe I used the same ostomy bags throughout my time with the stoma.  It does take a lot of time and practice.  Sorry to hear about your hospital stay.  Very tough times to be in the hospital, for sure.  

Hey CTB23!

One of the nurses mentioned that but what I am doing is alternating between 8oz of water and 8oz of sugar free Gatorade. I'm keeping a log of my fluid intake so I don't go too much Gatorade vs water and I am drinking at least 8-8oz of fluid per day. I also drink only water after reaching the 64oz.

Just have an eye on the sucralose.   Controlled medical studies indicate it may be adverse to your gut bacteria.   There's no free lunch.

http://www.jnmjournal.org/jour...02&vmd=Full&

Hi, Asa.

What you're describing is normal for your first few weeks and months. You're drinking a lot of water, which will flush away electrolytes and you need to balance that. Try to drink some clear broth to restore the sodium levels, if you have some canned soups, or if someone can do a few weeks' worth of shopping for you. Canned soups, with salted crackers, have lots of sodium, especially the clear broth or the chicken noodle soup, tomato soups. For now, stay away from creamed soup like cream of mushroom, cream of broccoli; those can lead to messy pouch output. Pasta and rice with chicken or fish will help you because they are soft and easy to digest. Maybe stay away from mushrooms for now as they do not break down. My stoma spit a small mushroom clear across the room, like a volcano erupting. Frightened the life out of me but when I look back, it is funny.

Like you, I also occasionally leaked from the bag at night and this led to distressing sheet changes and showers at 3am. Then I learned to accept it, remembering that it is temporary and I will get past this. It would not break me. There is no other way except forward. I slept in the half seated position, using pillows to prop me up, or I slept in an armchair because if I lay down in bed I would have leaks from the bag. It's normal, especially if your stoma has retracted or has shrunk: lying down causes pooling on your stoma. Sleep on lots of towels so at least you won't be too anxious and you'll know it's okay if there is a leak. Expect to do lots of laundry. You need sleep, and to eat meals with lots of soft protein (eggs, fish, chicken, tofu, 1/2 cup of canned baked beans) to heal your injured tissues and muscles. Every day can bring a new problem, and it can give you small triumphs too. 

Winterberry......I'm actually drinking sugar-free Gatorade along with water. The leaking was the bag itself and it leaked from the bottom every time. The bag I'm using now hasn't leaked, even after the first change. I'm due to change it tomorrow. 

With the sleep, I go to sleep okay but often wake up after about an hour even though it felt longer. Sometimes I can go back to sleep but mostly I'm up for a few hours than go back to sleep. Repeat. Occasionally I'll get 3 or 4 hours straight. I wish I had a recliner but right its the sofa. I'll try to use the bed but often end up back on the couch. I think the couch is now causing me back pain because it's soft and I end up on my back

I'm married and my wife is taking great care of me so she does the shopping and cooking. 

I've had all three of my surgeries and am 7 weeks post take down and adapting to j pouch. I've struggled with sleep since the first one, but I know with time after each one that got better. As for liquids, I drank water and also I drink propel water for electrolytes. It does get much easier to change the bag as you get adjusted. The loop ileostomy leaked far worse for me than the end. I also could eat just about anything with no issues with the bag. Hang in there, it will continue to get easier! 

Thanks KMiller for the encouragement. I hope sleep comes soon.....so damn tired (and cranky) Trying hard not to snap my wife.....LOL 

I told my hubby I dread bed time. Just takes time. Every time I got to where I could sleep I had another surgery! 

Asa,

I hate to tell you what it was like having my husband cook meals, especially when I was really sick!   Let’s just say that isn’t his strength!  Good thing I was on TPN for a while.  Take care!  

Asa,

Things will get better.  I have now been a poucher for 13+ years.  I kept a journal for the first couple years.  Foods, bm, meds, sleep habits, loss of the ostomy, etc.  Now days when i get a little down, i retrieve the journal and see how far i have come.  Really helps on the tough days.  You will make it.  Remember, He will never give us more than we can bear.

Dr. B

Hi All! Just another update on my recovery. I found a bag that I like that hasn't leaked (knock on wood) and was discharged from visiting nurse yesterday. I had to to change nurses because the first one they sent I didn't like at all. She had slight BO and her smock looked dirty.

At a time when I needed someone to calm me down (my anxiety was trough the roof!) this nurse made a comment "You know more about this than I do" was something I didn't need to hear. I made a call and spoke with the supervisor and told told him my concern. He then assigned another nurse who was calming and helped me tremendously!! Right now I am still learning to apply the bag by myself but seem to get better each time.  I am so glad the to get past those first 3 weeks (which were HELL!). I am getting a little more sleep. I think my problem was I was over dressed for the night time. As its been cold and rainy here in CT and me with out all my fat (281 down to 156, lost 25lbs with another 10 to go) I've been so cold. Once I shed some clothing, the night sweats seemed to decrease (I still get them but not as often). Still have trouble sleeping in the bed but will try something new when I get home tomorrow (taking care of my elderly father).

I have been told by Dr. Reddy that I have fat in my small intestine that need to be gotten rid of asap. So I hooked up with a RD and she gave me a lot of information on what my diet should be and I am planning on doing power walks to help alleviate the fat problem. My next appointment with Dr. Reddy is May 19th and hopefully I can find out when my next surgery will be and to quite frank, it scares the bejeeus  out of me. If the fat still remains, I will have trouble with the pouch expanding, but I must remain positive that the diet and exercise will take care of that! 

Does any one have a suggestion for chewable probiotics? Right now I am taking a capsule but would like to switch to a chewable one to make sure it gets absorbed better.

Thanks in advance and thanks for all your support and advice!!

Hi Asa Lay. I just read your comments. I'm sorry to hear about your trouble with the nurses. Once thought came to mind. There are a ton of YouTube videos of people showing how to do everything. Measuring needs to be done with the sample holes and whichever fits best, that's your size. Your stoma will shrink too. 

Pebiotics, I just take them out of the capsule. I take 4 capsules a day. My surgeon told me to take 2 a day but I wasn't doing good. I read on the visbiome website that you can take up to 8 a day. I take over the counter probiotics from a wholesale store. I open my capsule, put it on my tongue and swallow it with water. 

Hello, Asa.

I don't have a suggestion for chewable probiotics for your complete absorption, but have your tried kefir? It is a fermented (probiotic) drink found in the milk section of grocery stores. It tastes like yogurt, but is thinner consistency. I buy a strawberry flavoured, effervescent kefir and I like it. You could also try Greek yogurt -- not the sugary, flavoured kind, but just plain Greek yogurt. You can add your own teaspoon of honey or sprinkle of cinnamon, or blueberries, a banana, a drop of pure vanilla extract. Any of these will add flavour to the Greek yogurt. I used to drink BioK, a ferment yogurt-like drink sold in health food stores and in some grocery stores, again in the refridgerated section. Tjust like the kefir, these must also be kept in your fridge to preserve the live cultures. Each small (tiny!) bottle contains 50 billion live cultures for probiotic needs. I used to drink half in the morning, half at night to maintain a steady intake throughout the day. It comes in a pack of 12 or 24 for approx $25 or $35, depending where you live.