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There are a few of us that are having difficult times with our new stoma's.  Mine is a permanent one that's one month old.  I have not been able to keep one on for 48 hours yet.   I knew it would be difficult in the location I wanted but never dreamed of all of this grief!  I only need to put on stuff, paste or wax, to even out my abdomen in 2 places so I'm not trying to do the impossible.  I have a great stoma nurse.  I think I'm doing everything I should be.  

 

How long until your skin allowed one of these flanges to stay on for 3 to 4 days?

Thanks 

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That's a good question.
I am looking for answers after your post.
I will have one soon. A  Stoma.
Good luck to you.
Hope it gets better for you quickly.
I will have one placed just above slightly even to the belly button.  On the left.  I do not want the stoma on my belt line... Waistline... I don't wear belts.  When I had a temp... The very bottom bit of the stoma was at my waist line.  Drove me nuts.  As long as it does not rub on my pants I think I will be OK with it.
I don't even know if it's possible to put one where I want it.  But I will see.
Richard.

TEMarie, you're only one month out and your stoma and/or skin will most likely go through some more changes until it's settled. I went from a flat wafer to a convex one seven weeks after my surgery after my skin healed and I had some dips in my skin and I started to leak. My stoma shrank even more after a couple of months (yeah, I know they say it's stable at six weeks ) and I had to order bags with smaller openings. I'm still learning new things about what's best for me nine months post op, like how to not asphyxiate my family with my bathroom smells, etc., but I'd say that, unless you're blessed with flat skin around a perfectly round stoma, it takes at least two months to learn to take care of what you've got.

P.S. You say your flange won't stay on. Is your skin reacting to the adhesive? You may want to try different samples. I use Coloplast bags. They have a nice thicker adhesive. My skin reacts to Hollisters and Convatecs tape adhesive. Also, make sure your skin is dry and no loose powder on it before you put your bag on.

Last edited by Lambiepie

Thanks for replying .  I'm seeing a stoma NP once or twice a week and have tried several different brands she's given me or from samples mailed directly.  I loved Coloplast's barrier rings and stick adhesive but the wafer was too hard.  The thick plastic around the circumference was inflexible. 

 

I finally got one to stay on 2 nights. My skin underneath is bad.  She said I didn't need the stoma powder and  we put it on together.  This morning it is red and a part looks like a layer of skin was removed. The brand is Hollister and it's a flexible convex one.  I have to wear a belt or I get no life out of them.  My abdomen isn't an easy place to put it but I didn't want it up higher.  I knew it would take time - I'm impatient.  She thinks mine will shrink down some more soon. I already went down from a 2 3/4" one to 2.25"  wafer.  

 

I can do 2 months

Last edited by TE Marie

Oy, the problems! I can't get it under control either. Im using the Holiister convex 2 piece. I tried rings, I tried paste, I tried making a snake with the rings. I wear a belt, I heat the damn things up before applying and lay down for a bit. I saw the stoma nurse yesterday and she tried a convex ring with a flat. 8 hours from her! Good thing I caught it before I went to bed. 2 stoma nurses tell me my stoma looks great and my skin is flat and smooth. This nurse thinks my output is too runny and constant. Says to take Imodium. GI said don't take Imodium. Very confused. I took imodium last night and I was still up 3 times! 

Lambiepie, how do you wear the colorplast, they are hard. I tried the convetec Moldable and they hurt. I'm screwed.

See I'm blessed with flat skin and a perfectly round stoma and still have issues. 

History...
I only wore a temp bag for a month.
Didn't have many probs.
But I didn't  have it long.
I liked the Hollister system because the part that sticks to your body was a soft flexible material.
Now... I have not had the surgery yet but have been wearing a bag with applesauce in it and like said above the Coloplast are hard and you can feel them when moving and twisting around.
I found you hardly notice the Hollister and it was like the flexible bandages you buy.  I like those. I just pretty well forgot I was wearing it.
I hope I can conquer this.
Good luck to you all and good health to you.
Just a quick comment on the subject.
Richard.
Last edited by Mysticobra

I know the Coloplast adhesive is hard but it doesn't irritate my skin like some of the other tapes. I agree, Richard, the tape on the Hollister bags is super soft. I actually was going to switch to Hollister because they were so comfortable until I took the bag off and, although my skin didn't feel irritated, it was mottled with red dots when I took the bag off.......

TEMarie, your skin is red and raw and your stoma nurse said no powder?? I had one say no powder and another say F*** that and told me to use the crusting technique - powder, then no sting skin adhesive, powder, then no sting skin adhesive, etc, three times. This helped to heal the skin. Make sure you're measuring your stoma correctly because even the slightest too big of an opening allows stool to get under the ring and burn.....

Allykat, yes, if your output is too runny or "hot" from spicy foods or other things, then it will eat away at the ring. Have you tried different brands of rings, not just bags? Someone on here recommended Eakin Slims, apparently they're about half the width of regular rings (I use Adapt.) Maybe that's the culprit.....

I just have one more suggestion: calling the supply companies and speaking to THEIR ostomy nurses who answer the phones and take the orders. Sometimes all it takes is another opinion. I did this.......

I'm so sorry for your pain. It is so hard when it doesn't work and you can't figure out why.

AllyKat, They were giving me metamucil to bulk up my output while I was in the hospital.  Having thicker output means less fluid into our bags and decreases the times we need to empty the damn things. 

 

Lambipie  - I wasn't clear.  My skin looked good in her office so she said not to use it so the flange would stay on longer.  That was the only time she hadn't used it.  The flange stayed on 2 days, which was the goal.  But the skin was nasty looking again.  I did the crusting with powder and barrier stuff several times and this one is going to make it to the 48 hour mark.  I'm going to do it three times, like you suggest, if my skin is red at all tomorrow morning.  Thanks 

 

I've been adding water to my bag to make emptying it easier.  I was just thinking of anything that could help her. When I had a temp ileo my waste was always watery.  

 

I'm treating a UTI so am going to the restroom to urinate often.  I usually empty while in there as long as I'm there.  There are certain times of the day that I have little output and others where I am emptying them often. 

Last edited by TE Marie

I only had one of my Holister convex wafers left so put on a Convatec one at 4 am yesterday.  It stayed on well until my 1 pm Stoma Nurse appointment.  I have another one on and next am going to try one of their other styles next. She needs to prescribe whatever I decide as I am just running on samples now.  I went down a size on their wafer and couldn't do it yet on the Hollister convexes. The smaller the wafer the better for my lumpy abdomen.  Plus the belts are unbearable and am not wearing one with the Convetec.  I have fibromyalgia and it makes things like tags on clothing drive me nuts as I am more sensitive to those things now.  Anyway, if you want to try Convatec I ordered samples and my Stoma NP did as well.  I used them 5 years ago when I was fatter and had a temp.  The hollister's are nice but I can't seem to get more than a day and a half out of them.

 

I really like the Coloplast barrier sticks for filling in a few creases. Their rings for around the openings of the wafers are much thinner than Hollisters so you don't need to cut them in half.  Just use the ring and shape the hole in the middle to fit on the wafer. Their comma sized half moon looking plastic strips - I've been putting them on for more wafer support are terrific.

 

So I am using stuff from 2-3 different companies. Help, calgon take me away.....

I tried Convatec weeks ago and didn't like it.  I only tried it again as I was running low on supplies and wanted to save my "one" Hollister wafer and bag for the change at my stoma NP's office on the way to pick up a month's work of supplies. I am glad I tried Convatec again.  It is what I wore with my temp but I am having a hard time remembering much about it other than I used Convatec. I had a difficult time with it all mentally back then.    

 

AllyKat,

I don't see how you and I can both be successfully wearing the same thing as I have a fat scarred up abdomen and you are too thin! I'm referring to the Hollister convex one I was using.  It sounds like you are getting great wear time with it.  Somewhere I think you said 3 days.  I think you are a rock star.  I only managed to get 2 nights one time.  They told me at Mayo's that it would only need changing twice a week.  I'm delighted that I tried Convatec one more time.  

 

This all sounds simple when you aren't the one having to live with a temp or perm stoma.  I had a BM with a stool full of blood last night.  Now I'm afraid they will need to remove my j-pouch.  I talked to one of my surgeon's NP's today.  She said it is possible that there was some waste remaining in my j-pouch that hadn't come out during the surgical process.  My pouch wasn't working then so it makes sense that it just came out today......I was giving myself 4-6 enemas a day in order to empty my pouch.  I can see that, but the blood still freaks me out.  She said to let them know if it happens again as I will need to come back to Rochester.  She was going to get back to me if my surgeon thought differently.  It is nice to hear back almost immediately. My surgeon had surgery all day so this NP called me back.  

 

I'd also emailed my Internist who's nurse called this morning and said to go to the ER and not to Urgent Care. I told her that if it does happen again I am going to my local hospital.  Mayo is 3.5 hours away.  My local hospital was where I had my j-pouch surgeries and they have capable professionals for an emergency.  I am a worry wart.  I am praying it was a fluke.

Hi all, just a quick note about Coloplast bags - I tried a free sample of the Coloplast Sensura Easiclose Wide outlet with convex wafer and I really like it. The adhesive, while not cloth, is much softer than the Assura. I don't feel it when I move. I also got some samples with a one inch opening (I usually use 1 1/8 opening) and I'd like to see if that prevents leaking under the wafer even more.

Lambiepie,

 

It sounds like the Coloplast ones you are using are better than the one I tried,  It was a monster - like an oval saucer dish.  It didn't work on me at all.  I got a message to call a rep there and am going to ask for a sample of what you are using.

 

The convatec system is working 2+ days between changes so I am better. I seem to need to empty a lot.  It's not too runny either.

 

I need to deal with it for the rest of my life and am having a difficult time accepting that. I'm still having abdominal pain. She lysed my adhesions and they couldn't have grown back already!  Plus I am having A.C.T. treatments to keep them from reforming.  Every time I try some thing to make things better they just get worse. The prednisone and other drugs then the j-pouch that failed and now an ileostomy that is driving me nuts.

 

Thanks for all of the suggestions. 

Wow, the colorplast wafers are huge, even the smaller ones and the convex flanges seem so stiff. I've been afraid to try them after having pain with the convetec ones. Trying to make these Hollisters work.

I feel the same way TE Marie. I'm having issues with the pouch being left in. I'm not sure I can mentally or physically do another surgery. This just sucks big time!

I had a temporary ileostomy, which apparently can be harder to work with according to my ostomy nurse (those nurses are true heroes, ftr). It took me 2-3 months to find the products that worked and get the hang of things - basically right at the point I was about to have the take-down surgery is when I felt like I could live with it. Irony. I don't think I ever had a bag/appliance last longer than three days, though.

TE Marie - I've been reading your posts (including the last one here) as we are not dissimilar in what we are facing, such as I have longtime adhesions and want to get my failed J-pouch reversed. For what it's worth, I find your comments to be intelligent, articulate and - most of all - so helpful. Just want to let you know that and to wish that you get some plain old-fashioned good luck coming your way soon. Thank you.

Huckadoo, Thank you for your kind thoughts. Things really have improved since I started this thread.  

I got into see my Internist Friday morning at 8.  I was at the end of the 2nd round of Bactrim he'd prescribed for the UTI that I'd picked up in the hospital for the diversion surgery.  They had sent me home on a week of Augmentin when I was discharged on 9/6.  They tested my urine and the infection was finally gone... He talked to me, reviewing everything since the surgery.  He did the usual listening to my heart and lungs before asking me to stand up as he took my blood pressure. He then told me that he was ordering 2 bags of fluid and they could do it then.  Plus he ordered a CTscan.  I was in the clinic, which is like a mini hospital, until 3 pm. He told me later that my BP dropped too low when he had me stand up....I did feel like 

 

My doctor called Friday night and said the radiologist thought I had something on an ovary. I had them removed with my colon, as they were no longer working. He discussed what now was thought an abscess on top of my bladder, with the resident on call for my surgeon at Mayo's. I talked to the resident too and didn't like the option of waiting until Monday to see them, which is 3.5 hours away from here.  My doctor called back and said he was admitting me and gave me the hospital room number. Since it could be an abscess he didn't want to wait and I was feeling better but that could change fast.  It made since to me since I'd just gotten 2 bags of fluid the day before.

 

An Interventionist Radiologist, I'd never heard of that specialty before, discussed what he was going to do as I lay on a cart outside of the CTscan room.  It sounded like the worst thing would be that I would have a drain on my butt.  I would go home so wouldn't need to stay in the hospital.  They had me lay on my abdomen. The anesthesiologist knew how to compensate for my ileo.  He put a pillow under my torso with then end at my belly button. I had conscious sedation as the radiologist stuck a needle, which probably has another name that I've never heard before, in and drained it.  When I woke up there was no drain and he said he got it all out and it wasn't an abscess.

 

My doctor's partner told me it was only 40 cc's of clear fluid, a seroma.

"A seroma is a pocket of clear serous fluid that sometimes develops in the body after surgery. When small blood vessels are ruptured, blood plasma can seep out; inflammation caused by dying injured cells also contributes to the fluid", per wikipedia.  She said that it probably would have eventually been absorbed and might have been larger to begin with.  I guess we aren't going to worry about the air in my bladder.  The seroma was sitting on top of my bladder. I got out Sunday, best hospital stay I ever had!

 

I didn't have to change my bag! I was thinking about changing my bag as it had survived 48 hours straight. I didn't change it and took my supplies to the hospital.  I didn't need to change it there so in a few hours, it's 3 am Monday morning, I am going to change it after 4 nights.  I'm not going to press my luck. It looks like all of the practicing I've been doing the last 2 months has paid off! 

 

I look forward to reading about your surgery 

 

 

Last edited by TE Marie

Thanks AllyKat,

Good news!  She scoped me, no prep, sedation, etc. My pouch looks like a rock star, except the area I had the strictures is narrow. 

 

My surgeon told my husband that the surgery to remove it is worse than the j-pouch surgeries. Of course I had already told him that but it's OK because he is going to the appointments with me now. 

 

A ginormous relief.  What now?      To be continued.....?

 

Last edited by TE Marie
My surgeon said removing the Pouch is not worse than my original surgeries.  Notice I said  surgeries.
I am having mine removed in two days.
I am scared.. Anxious... Everything you can think of.
I will have a permanent ileosomy.  So I am looking at an appliance the rest of my life.
But first I have to get through the surgery.
My first round to create the Pouch was a nightmare a little over two years ago.
I cannot see this being worse.
I am going to start with Coloplast bags because that's what the hospital uses.  I don't like them because of how hard they are.  I will use the Hollister bags after I get out. 
I cannot feel it with every move because the material is softer and not rigid like Coloplast.
My pouch will be out so I don't have to deal with any problems that crop up with leaving it in.  And trust me... The way things go with me I will have problems if it is left in. 
Richard.

I think we need to take the word "worse" in context. I was under the impression, before I had my jpouch out, that the surgery was more complicated in that it could be challenging getting it out. I prefer "more complicated" to "worse ." Richard, as hard as it can be, try to view your upcoming surgery as separate from your other painful ones, if only to alleviate some of your anxiety. The positive outcome in a few days is that you will never have to deal with jpouch issues again. Oh, and discuss pain management with your anesthesiologist before your surgery. Be as prepared as possible. I wish you the best outcome possible. 

I am thinking as much as possible in a positive way
It's difficult.  And yes.... Once it's out I know I will be much better.  I will have to deal with what I have left.  I hope it is better.  I keep saying that.  I know.
I knew 2 years ago going into this that it may not work and it has now happened.  I tried.  At least I  tried it.
I just have to get past the surgery.  Of course it is the same with anyone who has to do this... It's life changing.
I had problems the first time around.  I want this one to be ONE and done. 
Thank you for the positive words.
I appreciate it.
Richard.
P.  S.
As of right now my surgery is in two days.
My wife says I dwell on it too much and I suppose I am.
I can.... But will not.... Back out.  I do not want to go through the process again.
She has been through a few surgeries herself and she can block it out.  It was such a rough patch the first time I did it.  It  didn't expect what happened.  No one did.
It would be silly to do this over again. 
But I do and am thinking about it and how I will do afterwards.  I cannot help but think about it now being it is so close. 
I know many on here have been though many surgeries and I just don't know how you did it without going crazy.
The first time I didn't think about but I guess now that I know what is going to happen is why my thoughts are on it all the time.
Just had to vent a little bit.
Sorry.
After my surgery... Problems or not I will come back to this forum.
It has so many good people and references here... Why would I not!
Thank you all.
I will master this.
How long it will take me?  We will find out!
Richard.

I think it is only natural to have upcoming surgery overtake your thoughts. You play scenarios over and over in your mind until you think of nothing else. The "what-ifs" can make you nuts. A number of years ago I had back-to-back procedures (cardiac ablation followed by an adrenalectomy a week or two apart). I researched all I could until I knew every potential pitfall. By the time I went in for the procedures, I was calm and very ready. Of course, everything was fine in the end. 

 

All you can do is prepare for the worst and hope gor the best!

 

Soon your anxiety will be over. Good luck!

 

Jan

There are benefits to worrying!  Had just read this and thought others could benefit from yet another study about what we already know. 

 

http://well.blogs.nytimes.com/...?ref=health&_r=0

 

It is five days until my surgery, although I'll be having k pouch. Yes, very anxious and not terribly efficient at finishing up some projects.  part of anxiety is going to Cleveland where I do not know anybody and part is they won't be able to do the K. I've invested mucho time in this adventure. 

 

Richard. Your surgery date is on my calendar.  wishing you the best and good luck to your surgeon.  Janet 

Thank you Jan and Janet.
Just reading some and watching the tube is calming me some.
I am ready.
I am ready to move on.
I have run everything... All scenarios in my head.
I'm done.  All I can do now is wait.
I have the best wife... My opinion.... She has my back no matter and when I think of that I know I will be OK. 
No matter what.
P. S.
Good article.
But I do find a good show on TV very distracting!
I do think the worst and hope for the best.
I set my bar pretty low... Lol.
Last edited by Mysticobra

I was repeating what my surgeon, at the Mayo Clinic, said to my husband and me. I didn't post that meaning I disagreed with any kind of surgeries you all are havivg. She has already been inside my abdomen, to divert me to my permanent ileostomy .  She spent 3 hours lysing my adhesions from all of my past open surgeries which included my hysterectomyand incisional hernia.  Maybe that was factored into what she said. I didn't ask if she was just talking about me or if she was saying that all surgeries to excise a j-pouch are worse thah the j-pouch ones are. She knows what she is talking about.

 

P.S.

The fluid seen on my CTscan was in-between my j-pouch and bladder. That is why they were doing all to make sure what it was. My Internist was concerned there might be a fissure in there.

 

I am not telling anyone what kind of surgery they should have. I'm commenting on my surgery. I wish all of you going through complete removal of your j-pouches and those getting k-pouches the best. None of these surgeries are easy. I'm sure you are all antsy to see them over.  I  didn't sleep much before my surgery either. 

 

Good Luck 

 

 

 

Last edited by TE Marie

TEMarie, please know that I wasn't commenting on your use of the word "worse" with insult. I was just considering what it could mean and I'm always trying to put a positive spin on things (unless I'm getting down on myself - then I'm totally negative!)  I would never try to cut down any poster's comment. I just want to make sure you know that. 

thanks for the support.  i need all i can get, and this site has been so very helpful for me.  i worry, i'm anxious, i'm forgetting things, getting appointments on the wrong days and am very inefficient with my time.  i want it over now!!  then, there will be the recovery time....

 

best to everybody else awaiting surgery.  janet

Good luck to all that r having pouch removal this week. 

Certainly understandable about being nervous.

Yes, total removal will eliminate the problem that I have now of diversion pouchitis. 

So because of this new development both my GI and surgeon have first recommended to reconnect but but but I start Entyvio on Tues in the hope that when I'm reversed I will not flare again otherwise well you al know what....Hopeful that the reversal will be in a month. I just want to get this done and over with. Living on benzos to keep me calm

I was on Entyvio at this time last year and went to the CR surgeon for consult to have a permanent ileostomy as nothing was working properly. She suggested the lowFODMAP diet and also mentioned the K pouch, which she offered to do although acknowledged she had only done one.  The diet worked for me for seven of the eight weeks between infusions, at which time I went on antibiotics. Then this summer everything stopped working again. So that's my experience w Entyvio. Also I had tingling in my hands and feet. 

 

curious, but now I'm off Entyvio, still on the diet, back on Augmentin, which previously I was refractory, and my system is sort of working. I have other problems w anus that together w unstainable pouch situation require that I convert to the K.

 

so fingers crossed that the Entyvio works for you. Hang in there. So frustrating at times to wait for meds to kick in. Janet

Thanks Janet and good luck to you too!

i was thinking that I should go on some kind of anti inflammatory diet? 

What is the difference between Paleo and low Foodmap? Any idea?

Just curious but what kind of problems do you have with your pouchitis?

im getting nervous about reconnecting.

Will be following you in your journey to k pouch

Susan

 

susan--hope this is clear (am tired.)  if not please ask me to clarify.  or perhaps we could talk about this via phone as easier to answer your questions that way.

 

sugar and shellfish, for me, cause inflammation.  if i consume either, even a tiny bit, i’ll bleed within six-eight hours.  diet matters.  

 

much of my pouchitis problem is due to ischemia, which was a result of the original surgery.  a doc in nyc thinks all i need to do is have the pouch remade, by him, and i’m good to go.  but i’ve always been diagnosed, by other docs, as having pouchitis in the pouch itself and not just where it was stapled together.  my pouchitis symptoms were incontinence and bleeding and increased frequency.  antibiotics worked until i was either allergic or refractory.  was off of augmentin for close to a year, so am doing great on it now.  but the situation isn’t sustainable and i’ve finally come to acknowledge that.

 

i’m not that well versed with paleo so not certain on the differences between the two diets.  primarily they both reduce carbo intake.  they both restrict beans, chickpeas and also gluten.  there are differences, and i think much of the differences are because they are based on different theories of what is good for one to eat.  consider that paleo is for the general public—well, those who buy into it—whereas lowFODMAP is targeted at those who suffer from SIBO.  also, paleo is a life style and fodmap is an elimination diet for 6-8 weeks after which one tests out the foods they can tolerate.  (i’ll add my two cents/non-tested theory.  does it not make sense that the small intestine takes over part of the colon’s role of absorbing liquid?  SI not designed to do that and perhaps that’s why some of us—after colon is removed—develop SIBO, which is a condition caused, in part, by osmotic changes i.e. water pulled into the gut.)

 

paleo, for example, disallows dairy, whereas fodmappers can eat it, if not lactose intolerant and/or can eat certain types.  paleo do not eat potatoes or quinuoa, but fodmappers do.  i had to look that last category up, and while doing so found this on a paleo site, which makes me not want to eat quinuoa:

Quinoa seeds may contain very high concentrations (up to 5,000 mg/kg) of compounds known as saponins, which like the name implies, have soap like properties they may cause a “leaky” gut by breaking down intestinal cell membranes. I believe that a leaky gut promotes chronic low levelinflammation and likely represents a necessary step in the development of autoimmune diseases.

 

 

lowFODMAP basic info and links are below.

 

here is some basic info, from: katescarlata.com

 

http://static1.squarespace.com...DMAPS101_handout.pdf

 

http://www.katescarlata.com/lowfodmapdietchecklists/

 

for 250$ you can get a consult with her, maybe it was 150$.  only recall it was expensive.  i had one session.

 

monash university developed the lowFODMAP diet, and they have an app for it, which is invaluable if you are going to attempt the diet.  there is an apple version, below, and also android.  lots of info on the monash site. 

 

https://itunes.apple.com/au/ap...8&ign-mpt=uo%3D4

 

thanks for the good wishes.  i greatly appreciate your support and others from this forum.  janet

what are your cats’ names?  they are pretty.

 

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