@chelly ... Hey you! Its so nice to read all the replies here again.  I am so happy to hear,   even if baby steps, that you're feeling there is improvements. How wise you are to go into this specialized care where you can get the physio & extra care you need thru healing and taking care of yourself physically. Don't forget that care on the  emotional side is so very important. Yes, I've been called a drug seeker and also been told to "go home and have sex with your husband, everything will be okay dear!"  Needless to say I had a special few words I wanted to say but didnt dare, for that so called lazy azz specialist! 

In my year being 6 hours one way away to my parents home & away from my family was a very trying time.  I saw my hubby on weekends for about 6 hours only on the Saturday. He would leave from our home town, drive to my parents and spend the night. Mom always had food ready for him to eat. Then Sat. he'd drive the almost 3 extra hours by the time he found pay parking in downtown Vancouver to come see me in hospital.  We had a routine! Lol! We'd catch up on everything from his work, the kids, our three dogs and bills. Then we also catch up on us & on the emotional side of being separated the way we were. It was a little painful on its own even though I had a land line by my bed & we spoke every night before he fell asleep.  I say "he" bcuz we all know there is NO good SLEEP in hospital right!! Lol! 

After we caught up, we also ate a meal together. The nurses were so kind about ordering an extra tray of food for him to eat lunch with me. Oddly enough, the food there was very good & tasty. I rather marvelled at that as it was a hospital! Lol!  Then the best part, my man would get up close the curtains as tightly as he could around us, as there were three other  patients my room, telling everyone we were going to grab a much needed nap. It seemed that time was rather respected as everyone became much quieter too. With my sweet hubby snuggled against me, he would sleep and I would just lay still as could be absorbing his warmth beside me, listening to his breathing & eventually his soft snore. I needed to record it in my brain bcuz I so missed him desperately in the week. How grateful I still am for that time together as only 5 months after my escape was when he was diagnosed with pancreatic cancer at about 2 a.m. ish boxing day early morning. 

That was the best part of my week. And likely the best medicine! Chelly, have you got family & friends that come to visit you? I was thinking of that while I read all the replies. Other then my hubby, my sister came up in the middle of the week always bringing me a homemade meal.  But no fri3nds made the drive. It was after I was home that some had figured I'd just died & we had a quiet family only service for me. Imagine that! They couldn't pick up the phone & find out, only assume. Those were the so called friends I wrote off after I was home. They weren't worth the time of day if they couldnt even pick up the hone to call me & heck, I deserved at least a phone call befote my funeral! Lololol!

So I'm hoping that you have good family & friends coming in to visit you. It never has to be a lot of them, just a couple of the good ones you know.  I do get it,  that unless someone has walked a mile in your shoes, they honestly never fully understand the extent of what we deal with and I'm not sure we want them to either.  But even just 1 or 2  amazing family or friends, can be the difference in our outlook.  

Chelly, you keep hanging in there and stay strong. As said above two steps forward one step backward. Do not let discouragement creep in too badly.  Let it have its moments of popularity then flush it down the toilet twice, to make sure it goes where it needs to be.  Thank you for updating here, as we are all thinking about you & please know that the concern is real.  I know how hard it can be when you are feeling the effect of medications that seem to hang around forever,  from surgery & that darn fatigue thing that sets in from poor sleep, a change in foods and just the  overall stress of it. You may not feel like it, but you are doing amazing! Tty soon! 

Linda

@dlkfiretruck it sounds as if you have been through. Whole lot. I'm happy your doing well now. 

I've had 2 visitors this far. 2 good friends. All of my brothers and  sisters are in a different state. One of my sons  is in a different state as well and the other son is working 2 jobs. The friends did go shopping for me and got some personal care items I needed. Of course I paid for them but it was nice they went to get them for me. I was totally unprepared for this surgery date 

. 

Yes I'm glad I came to the skilled nursing facility after because I don't think I could have done this had I not. 

I'm very weak from all the liquid diets and just the wear and tear of surgery. I did talk with the right person about my diet and they are clueless here about ileostomies and what we need to stay away from to avoid a blockage and GI low residue soft diet and confused it with soft mechanical. Soft mechanical is for people with swallow issues. Soft GI low residue is low fiber and foods that are easy to digest. Fish, chicken, ground meat ect... They don't have that diet here so I asked to be put on a normal diet and I will just not eat things they send on the tray that are not supposed to be eaten. They gave me a sandwich today that had peppercorns in it for instance. I had to order out because I was hungry and can't be swallowing those peppercorns like that and besides it was only 2 very thin slices of lunch meat and one slice of cheese and a mixture of Rock hard vegetables. Had they have pureed that I would never have known what it was. 

I did some small physical therapy exercises today as I do daily with them. I walk a little and I've been sleeping really deep and sleeping a whole lot but I'm.just following what my body wants. 

I know once I go home it's going to be back to the grind so I'm.taking full advantage of this time to.rest and heal.

They are going to submit for a Hospital bed and a rollator walker for me to have when I go home. Hopefully it will be approved. 

Thanks for sharing your experiences with me 

I've been tolerating the full diet for a few days now although this stoma seems to never stop going. I feel hungry all the time which could be from all the food depravation from being put on so many liquid diets all winter with the blockages. They served a casserole tonight for dinner and in the second bite I notice mushrooms were in it. A big no no for us so I had to have them find me different food. Also they are supposed to be giving me Gatorade drinks and lots of fluids and they keep shorting me. I hope I dint dehydrate. I'm drinking water but my GI doctors want me drinking other fluids like electrolyte drinks and juices as well throughout the day. They have them in the kitchen but not putting them on my trays. Aides to lazy to go get them. It's all falling upon deaf ears.

I'm still doing the therapy here and the exercises are very light but they help because I can certainly feel my sore muscles after. Feeling better with each day and gaining more energy from eating food. I should gain weight in no time. 

I think they are releasing me home on Friday so I know I will be walking to the store and pushing a cart home with what I need to buy. I'm going to have to take it slowly. Not sure that I will get pain medication for home. I feel like I may still need something to get through this. 

Supposed to be going home Friday and my follow up appt with my GI doc is tomorrow. Maybe going home is the best solution now health wise so that I'm getting enough fluids. Skilled nursing facilities have no clue or very little education on ileostomy patients as to what we require, need and can't have. I do wake up every morning with a very dry mouth that sticks together so this can't be good. 

It has its good points and bad points being here. It's nothing like the hospital that's for sure but I did need the extra help initially. 

@chelly Wow! You’re making great progress being on a regular diet already! Can you get some help when you go home, for meals and grocery shopping? It might be too much for you to be pushing a shopping cart home right now. Do you have any community services that can help (the hospital social worker should be able to set those up for you) or even Meals on Wheels that you can have delivered temporarily? What about community nursing care coming to visit when you’re home? 

It’s so good to know that you’re making progress, Chelly. Thanks for keeping us updated.

 Laurie 

@chelly  ... Wow! Going home?? If your not sure your ready just yet, push for a little longer. Even a week may make a difference, but I get it, when the bone is there, you want to gnaw on it & leave!   You're the only one who can say what you need. You just have to push for it. 

You've hit on several key issues here... Laurie has mentioned all my concerns as well.   Please, no pushing any cart home or carrying heavy anything, you may regret that terribly! Be sure & tell the doctor you have no transportation to get your foods.  Some grocery stores here had shopped & delivered to seniors for only $5.00.  Though due to gas expenses, locally, they just canceled the program! Such a shame!  On that note , I've been looking at buying a Senior Mobility Scooter cart thingy... lol! There's been a noticeable increase in mobility scooters here the past three months since program was canceled.  I've also discovered our medical covers a good portion of its cost. I can't drive anymore due to my lovely arthritic bones,  but I'm okay with that.  Its my decision.  Small town access isn't too bad for walking, so a mobility scooter is just what I need for the next stage of my life & this allows me to go downtown & come home on my own without calling for a ride.  I can even go check the mail again! Yay! Chelly, you may want to look into one for yourself and now is a good time,   as your so aware of your limitations too.  The coverage on these carts are all about limitations! The process for coverage in B.C. 🇨🇦 starts with the gp office visit about this topic. 

Watch yourself closely if you do go home. Find a you tube for easy yoga & recovery excercises to help to continue building your strength.  But Chelly, remember, this took a long time for your body to get to this point, so know, it's going to take a long time to heal too. 

Please be careful with yourself & keep reporting back so we can encourage or even discourage if you need it! Lol!  We do care about you! 

Hi ladies,

I went to my follow up today and the stoma nurse got to see the lump on my skin and she took pictures..my stoma has already shrunk so she gave me more bags in the next size down. It will probably shrink again. I will set up to go see her again in about 3 weeks to see if it gets smaller again . 

After stoma nurse I went upstairs to surgeon appointment and they pulled up the stoma nurses pictures she took but they had me take the bag off again.she prodded at it with the wooden end of a q tip type swab and boy did it hurt. She said she would leave it alone and not try to drain anything and put me in 5 days of doxycycline. She said it could just be folliculitis and maybe not an abscess. Boy does it hurt though. 

The doctor here was only able to get me 2 more days so I will be leaving out on Friday. I can't do the food delivery from Walmart or any other grocers. . Well, let's just say I won't. I'm not going to put my card online for anything any longer because. Few months ago all my online accounts were gotten into so it's all just to scary to ever do that again. I do get a meal delivery from a company but most of the food and meals is a no go for ileostomy. This far I'm trying to plan out what I need to do and listing from most important things to least important things. I'm thinking maybe God will work his magic and send me an angel to help. The home health here does not do any shopping or cleaning or laundry. They only take blood pressure and vitals and help with wound care. 

I'm just going to have to be really careful about doing things and maybe letting some things go for a while. 

. 

@chelly I’m really glad that your medical team is paying attention to your stoma. I’m sorry that it hurts so much. Hopefully the antibiotics will help. I think you gave yourself some good advice about letting some things go. Is there anyone, a friend or a relative who can help you do the basics right now, even for a few days? I hope that being in your own place will help you heal faster. 

Laurie

Hello,

I was able to get a ride from a man at the church that I want to start attending as soon as I get well. He took me to the bank, then to get a money order for my rent ( this is the only payment they will take, crazy! ) he then took me to target and then this other discount store and then to go get my prescriptions. Was a full 3 hours he took out of his day and I was so appreciative. I got all my necessities and more food.

My poor stoma, the red bump still there and the revision ...it turned out worse than it was before. Idont  know what to say. I guess he tried but he was not my surgeon. He was a fellow on his team but my surgeon was in the next room and came in to look at everything before they closed me back up. I don't know how I will ever get this stoma fixed. It's hard to keep on a bag. They'd almost have to take it down and start fresh but I don't think it's possible due to that mesh inside me. I'm going to have to consult with them if this this thing don't straighten out in a few weeks. They told me the other day to wait because I just had surgery. Wait to see if it all falls In Place. I guess I just don't have faith that it will. 

Today I had no choice but I had to do 5 loads of wash but the bags were not heavy and then I'm looking at my bathroom and my shower needed cleaned and my bathroom sink and toilet bowl so I did tackle that along with wiping my kitchen counter down and the kitchen sink I cleaned . I stopped there, that was way too much already and I'm not ready to do the floors yet. That will have to wait but the bathroom smells much better now. 

I ordered gloves from this company and usually they get them out the next day but this time saying Tuesday and I'm in trouble for those. I will need to spend yet more money on some and have to walk to the store but at least I won't have to push a huge cart home. 

I'm eating well, still taking my doxycycline antibiotic and have a week worth of pain medicine if I need them. 

When I was in the nursing home they use adapt adhesive remover wipes and I think I'm really liking those better than what I currently use. No scent what so ever. I used to like convatec sensicare but they changed them and they have some kind of scent now and give me rashes. 

@chelly  ..  Chelly! Yes, you did too much right away, but I totally get it! When you're living alone, you have no choice!  So, now, let the floors go, it's the table you eat at. The floors won't mind waiting a bit. I have to sterilize my floors soon too.  I've been in & out of the house to get to the front door with shoes on & I'm sure there's a trail between here & there! Lol! 

Good on you to call on a local Church to get some help. I'm so proud of you & I know how hard that can be, but sometimes we have to, no choice right.  You must protect your tummy from this surgery.  Try and be a patient patient with the healing process.  Remember there is swelling inside of you still that needs to go down & if your not resting it can't do that. I'm so glad your able to figure out what to eat!! I've been gardening the past 10 days thru a partial blockage & it's been terrible after I'm done, so I need to take some of my own advice too I guess! Lolol! Mine is likely due to not staying hydrated enough! You'd think I've learned that by now! 

You keep healing and thank you do much for keeping us in the loop.  I am still praying for you too!  You are so much stronger then I could ever be. 

@dlkfiretruck Hi, yes I am being patient. It's hard but I'm doing it. 

I know from my past surgeries it will take months before I somewhat feel myself. 

Having trouble with this revised stoma though. The stoma turned out worse than it was and I don't know what to do about this. Having a lot of trouble with my bags. There's a buldge on top of the stoma  that the stoma is hiding under  and the stoma itself is  flat on the buldge end  and then underneath is a dip. Having hard times with that.  I'm going to call the surgeons office about it it was not this bad before. I feel like I'm never gonna be fixed right. It's frustrating to say the least. I'm kind of feeling low self confidence to to it and making me avoid going around people because I don't know if smells are leaking out or not.  It's a struggle. The surgery needed done due to all the adhesions and kinks for sure but I guess it is what it is. I'll have to go consult with them Again about my stoma. Other than that I have good days and then days where I just wanna rest. They ordered me a hospital bed for my home so I'm excited for that. I gave COPD, asthma, gerd and sleep apnea so that's how I qualified but being able to elevate my head will help with not only all of that but will help my output go down to the bottom of my bag verses to the top in a laying down position. Not sure how comfy it will be but I'll soon find out. 

I'm sorry to hear your having some partial blockages. I hear you on the fluids and dehydration. That can certainly do it. I hope you get that resolved. It's painful!  Let me know how your doing. 

@chelly If possible, try to get access to a stoma nurse to help you though these challenges. And I think calling the surgeon's office would be wise.

I'm really sorry that you're going through that.

@veganostomy hi Eric,

Thank you and yes the stoma nurses saw it but since I just had surgery they say to let everything settle out first as in swelling from surgery etc. I think all that is over about now though. When I look down when changing I can't see the stoma because of that buldge. It's like an awning covering it. I have to use one hand to pull up that awning so I can see to get the bag on.

Since I have you here, I remember a post you did about rinsing the bag and how you could feel the water around the stoma like under barrier? I have been having that lately. I was trying to find that thread to see if I could find the answer or a solution for that. 

Posted by: @chelly

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Since I have you here, I remember a post you did about rinsing the bag and how you could feel the water around the stoma like under barrier? I have been having that lately. I was trying to find that thread to see if I could find the answer or a solution for that. 

When that happens, it almost always means that the wafer will need to be changed (for various reasons, including it just being that time).

The caveat is you tend to notice this sensation more when you use colder water, but colder water (in my experience) tends to cause the stoma to shrink, and may actually be the reason for water to get under the wafer.

So, I wouldn't use it as a "test" of the wafer, but would advise against aggressive rinsing, especially with cold water.

@veganostomy this makes total sense. I do use cold water. It can even happen when I put on a new bag. I did notice it dont happen with warm for some reason. I never thought about the cold making the stoma shrink so yes it all makes sense now. Thanks for answering about that issue. 

Another question for you Eric...you know I just had the surgery and the stoma was revised. You know how they say the stoma will be swollen after surgery but will gradually change sizes until.it teaches it's long term size? 

1. Well, I'm noticing a whole lot of my hollister barrier ring showing up in my bag around the stoma. Like excess amount. Would this mean that maybe I've shrunk again and there's too much exposed skin around the stoma and could it be the hole in the wafer is too large or could it mean the hole in wafer too small? 

Chelly, this is what I love about Eric's/our  VO!  You can get answers here from others who've experienced the same issues & tips for making things better. 

I think it's also about weining out what's worked for some & what can possibly work for you too. 

Stay at it until you've got it figured out & I'm very confident you will! Hang in their Chelly! 

Posted by: @chelly

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Another question for you Eric...you know I just had the surgery and the stoma was revised. You know how they say the stoma will be swollen after surgery but will gradually change sizes until.it teaches it's long term size? 

Well, I'm noticing a whole lot of my hollister barrier ring showing up in my bag around the stoma. Like excess amount. Would this mean that maybe I've shrunk again and there's too much exposed skin around the stoma and could it be the hole in the wafer is too large or could it mean the hole in wafer too small? 

How often are you changing the appliance now?

I don't remember the specifics after my own surgery, but I was having to measure *every time* for quite a while (many, many months), but especially in the first month. And I would change the appliance more often than normal, every two days or so, because as the stoma would change size, it would expose more skin.

If you notice a lot of exposed skin, cut the hole a little smaller next time. The gap when you put on a fresh appliance should be minimal, but not "tight". The wafer will swell a little to fill in some of the gap, but the amount of swelling depends on the appliance.

Sometimes timing is also important. If my stoma is quite active when I change my appliance, it will widen as it tries to push output out. If I were to measure then, the hole would be cut too large.

I also always stand up when measuring. I think if you were you measure laying down or while sitting, the measurement may not be accurate.

@veganostomy hi, I currently do not have a measuring card on hand. But the stoma nurses have been advising. I'm going again on Friday to see the nurse and Thursday to see my surgeon. I'm not happy at all about these stoma changes from the surgery. It's worse than prior but I did need to get those adhesions and kinks taken care of. I may have to go in again at one point over all this. I feel like a hernia is forming again as well. I mean they did cut into my mesh and only stitch repaired.  I noticed since they changed me to this size that this is where I am seeing excess barrier ring swelling up around  and melting quickly and even on top of the stoma sometimes. It got me wondering if I'm seeing this much is it because the measurement might be too big? It's been happening since they changed me to this size. And it's melting pretty fast. I change once daily but I actually feel like I need to change after first or second empty Mine are precut be cause this convex by convatec does not have a cut to fit in an active life pouch. I once tried  pouch without a ring at the hospital but it leaked under the barrier around the stoma. I've been wanting to try that again but worried I'll leak. Hopefully I'll get a solution. You asked about standing when measuring. When I do have cards on hand I do it standing . I also change while standing. The stoma nurses are doing it with me lying down so now you got me thinking that if they are measuring with me laying down that maybe I should have them measure me standing and lying down to see if it's the same. 

@chelly Lots of variables to think about, eh?! 

Those melting barrier rings. In my experience, that could be caused by a few things:

1. Your output is “aggressive”, so it degrades the rings more quickly. For an ileostomy, this would be more common.

2. The barrier ring itself may be the type that "melts" or isn't designed to handle ileo output (per point #1).

Which one are you using?

Some of the more durable barrier rings would be something like the Coloplast Protective Ring (NOT the Mouldable Ring). I'm not sure if they are still made, but there are also other brands that have barrier rings made from silicone that should not melt at all. It's been a while since I've had to buy barrier rings, so I'm not really sure what's new.

@veganostomy it's a Hollister cera ring which those are very melty anyways but never to this extent. I'm allergic to both of the coloplast rings, eakin and others. Seems the only ones my skin will put up with is Hollister adapt and cera ring. Boy oh boy the struggles we go through, but hey we are not sick anymore. I just thought of something.....when I go to the nurse I'm going to ask for a regular adapt ring and see if that might melt less. I'll let you know how it goes.

@chelly That's too bad about the allergies :( I know that some people swear by silicone-based rings, but they actually don't even stick to my skin, so those have never worked for me.

I think trying the adapt ring would be worth your while. Even just to compare to the cera ring. And if they work better, great!