Help with Large Hernia - Need Advice on Finding a Better Fitting Bag

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supernan
Sep 04, 2011 6:53 pm

Hi, I am new to this site, but reading it now I wish I had joined months ago. I had a permanent colostomy done on 31/1/2011 due to a bowel to bladder fistula caused by severe diverticulitis. The trouble was that as I also have quite serious heart disease, the cardiologist wouldn't let them stop my blood thinners, so I was given all these dire warnings about how I might not survive as I could "bleed out". However, I told them that I had the utmost faith in my own ability to survive although my family were very nervous!! I was fine and discharged after 5 days BUT 2 days later I had to rush back in as I had a nasty pelvic collection (abscess, I presume they meant) which was not at all pleasant and left me feeling really ill in myself. I had an operation to try and drain it but that didn't work so had to have a rectal drain inserted under X Ray. After this, I was told that I couldn't move for 4 days. I think that was probably the hardest time as doing everything on your side in one position was quite difficult. Luckily, because I still felt quite ill, I didn't have to worry about eating too much as I didn't feel like it. Anyway, I was in for another 2 weeks and then discharged. However, my recovery was put back a bit when I had a bad asthma attack 6 weeks later and so was admitted (to the heart ward this time) for another week. The trouble was I had a productive cough and guess what that gave me a hernia!.. In the meantime, I have also had to have numerous tests done on my heart as my angina was playing up, and they have found that my right coronary artery has completely blocked off again, and this time they cannot do any more as I already have 11 stents in that one.

HOWEVER, none of that is my problem, the only thing I have a problem with is the hernia. This is now the size of a melon, and the stoma just keeps on growing! At the moment it is 50mm but I am having terrible problems getting the bags to fit. They pucker up and then let smells etc. out. Luvverly!! I have a hernia belt with a hole which helps with the general discomfort and such and have gone over to maternity trousers, but I just wish I could get a better fitting bag. The trouble I have found with the medics is that I am only seen as departments e.g. cardiology or colorectal. But sometimes they cross over such as when the skin surrounding the stoma breaks down when it has had a growth spurt, it bleeds a lot due to the fact that I am on strong blood thinners, but the stoma nurse won't accept this and says get my GP to reduce them. If I went to the GP and said that then he would just say, no he can't as I would have a heart attack and would refer me back to her. Doh!!! So if anyone out there knows of a good bag for hernias I would be eternally grateful.

Anyway, sorry for going on so much, but it has done me the world of good getting all that off my chest and after seeing what other people have to go through it makes me feel so lucky to be where I am today. By the way, I can't have a hernia repair due to the heart, as it would be a morbidity problem. XX

DH
Sep 04, 2011 7:47 pm

Wow! You are going through too much. And to say that seeing what other people go through makes you grateful for where you are today. That shows you have a lot of faith and courage. But I have to say that after reading what you are going through, it makes me feel lucky to be where I am today. Stay positive and strong, and I hope someone on here could help you with what bag you should use for your hernia. Best wishes!

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mooza
Sep 05, 2011 6:02 am

Vent darlz, I just saw this hernia blog and thought I would jump in. I'm in Australia and I think I'm in need of a hernia to be fixed. I don't know if I'm getting the pain right, but it's pinching me and getting worse. Supposedly, I also have inflamed ovarian cysts! I use the Coloplast Sensura, which is not a round-shaped flange. Also, I think Omnigon has something. I have put it somewhere on the site. It's new in Australia anyway and for hernias, it also has aloe vera in it. I can't find my ostomy magazine...mooza xxxxxxxxxxx

supernan
Sep 05, 2011 6:57 am

Thanks for your wishes DH. Also Mooza, thanks for your comment. I have tried Coloplast Sensura, but they don't seem to go up big enough now. Perhaps I am just being greedy, ha ha!

supernan
Sep 05, 2011 7:27 am

Oh Mooza, I have just found out that it is only the Sensura Mio which are too small. They do an ordinary one which goes up to 60mm, so I will be trying them. By the way, good luck with getting your pain sorted. Hope everything works out for you. x

 
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Kerry
Sep 05, 2011 8:58 pm

Hi Supernan.. try using Dansac Nova, Maxi.. they cut up to 90mm length.. and 70mm wide !!! Plenty room left for extra security around flange after you decide what shape to cut to.. Stoma bag is a little bigger than the usual one, but hey.. needs must..xxx Kerry

supernan
Sep 05, 2011 9:43 pm

Thanks a lot, Kerry. At least now I know there are some bigger ones out there. I have tried Dansac before for the dropped waist ones, but that was before the alien grew! Still shows that there is some hope. I had wondered if I might have to use carrier bags and duct tape!!!!!! Jenny x

lyricalaska
Sep 07, 2011 8:04 am

My surgeon is reluctant to repair my peristomal hernia. He states there are too many adhesions, etc. I am a R.N. so I have some knowledge, but my surgeon doesn't see that as anything with which he should even look into. It is depressing. He first said he would do a reversal, but now states he doesn't want to do it - due to all the problems: usual post-op things - leg clots, stroke, lung clots, death, etc. I'm frustrated.

Kerry
Sep 07, 2011 9:23 am

Lyrical asks.. like it.. well I too am an RN and have much knowledge on such matters, in fact my first surgical rotation experience was a total colectomy!! How odd.. did I ever think that one day it would be me on that table!!! Ah, life.. maybe you have other underlying health issues? There's always a hidden reason apart from those stated, but if not I would say change your team!! Get other opinions.. there are many excellent capable surgeons out there doing these procedures, so do your research.. as you know well, with any type of surgery there can be many peri and post-op issues for some patients and others sail through. For goodness sake, adhesions can be a nightmare, yes but, a capable surgeon can and will try his best!! Yes.. so, if you must travel further afield then do.. it's always worth the try.. if you don't try every option you'll never know.. have no regrets.. most important.. you are still new to this, have a little patience.. Rome wasn't built in a day..! Do the groundwork.. keep me posted.. good luck.. be positive (not easy) things have a habit of working out.. if it's meant to be it will be.. it's all in the grand plan!!? I'm in the same boat at the moment, but things are looking more positive.. chin up xx Kerry

supernan
Sep 07, 2011 10:52 am

I feel for you, I consider myself very lucky in that I knew in advance that mine was going to be permanent as my other health problems wouldn't stand up to a reversal. However, the hernia was a bit of a surprise! Still, as long as I can get the right bags, I will be fine. I was told that the success rate of hernia repairs was only 50% anyway. So although very frustrating and depressing, things will get better. I have down days, but then some aspects of what we all have to deal with will suddenly appear to be hysterically funny, and then I am O.K. again. I would say that as a novice, the best bit of advice would be to accept the bag rather than fight it. However, as I said, I knew in advance that I couldn't do anything about it, so I was saved all the ifs and buts. Good luck, I'm sure things will start to look better soon.

lyricalaska
Sep 09, 2011 1:35 am

Hi, Kerry and all! I have no other underlying health problems. Supernan, I was also told the same thing about hernia repairs. I have no other choice but to accept the bag (I may not like it much, but there is no other choice but to accept it!) It does, however, interfere with Middle Eastern Dancing, which I love to do. LOL

mooza
Sep 09, 2011 9:31 am

Hey Lyrica, lol. I use that tablet, Lyrica. Hahah, why can't you belly dance still? I had a few reversals, ladies. Not all cracked up what you think they are all about! I did my first bungee jump, so I think a belly dance might do you good. We have these things. I don't love it and don't hate it. Love-hate, yeah, that's it. If I could reverse again, ahahah, I would. But I can't, all sewn up now. But I can say all that surgery did take its toll. Sooo many adhesions, bloody hernias. Arggggggggggggggggggggggggggg. xx Mooza Australia. xxxxxxxxx

mooza
Sep 09, 2011 9:31 am

Oh, the cysts. I'm still waiting for my appointment and antibiotics failed. Grrrrrrrrrrr. I'm not wanting to go to the E.R. just yet. Just thinking those Tic Tacs are shite. Oops, sorry. Lingo gets bad around pain. Sorry..xx

lyricalaska
Sep 12, 2011 3:31 am

Hi, Mooza! I'm still belly dancing (Middle Eastern dancing sounds better). I've been doing it since 2009 and love it. Now I have to find a way to hide the bag when I'm dancing. I'm not sure about reversing the colostomy. I've heard from others they have short bowel syndrome, which means you'd better know where the bathroom is EXACTLY and it can't be more than a few feet from where you happen to be. That doesn't even sound good. Others have said they wear adult diapers because sometimes they can't hold it long enough to get to the bathroom. So that's where my thought processes are currently going. I did find colostomy bag liners (Colo-Majic) which are wonderful! So now I have to figure out how to make the costume for our next performance, which should be in April of 2012 - that is, make it so my colostomy collection bag isn't obvious. My stoma is at my waist, which is another sort of problem. I will survive!!

lyricalaska
Sep 12, 2011 3:41 am

What tablet, Mooza, are you using?

mooza
Sep 12, 2011 10:34 am

Lyrica - for nerve pain XX

tricia63
Sep 22, 2011 12:32 pm

Hiya, I use Coloplast Sensura. They stay exactly where you put them. Good luck.

mooza
Sep 22, 2011 11:45 pm

So do I, Tricia. Sensura drainable. I think it's easiest to unfold for drain and clean wipe. LOL... xx Mooza 15537 cut to fit... very happy with CT. STUFF...

supernan
Sep 23, 2011 6:15 am

I have tried them but they still seem to fill up with air. Now although this sounds crazy to me, my son first came up with the answer when I was saying that whenever I bent down the bag seemed to be filling with air. I had tried eating more often, not having any fiber and still it was happening, but it had only started since the hernia had got so big that it was difficult to bend down. So my son said it must be an imperfect seal was letting air into my bag (like a bicycle tire he said!!) I then mentioned this to the GP and he agreed that could be the reason and prescribed some flange extenders to cover over the puckering up of the flange caused by the hernia. He said try them and see and what a difference. Now I can go all day and only have one change. I have used them over different sorts of bags and they work with all of them. The best bit is that I can go back to using my own personal favorite, the V style flushable for a bit longer as they only go up to 50mm and my stoma is now 50mm. However, with these extenders I am not getting any leaks or gas escapes from the puckering. So now I can liken myself to a bike tire, although I am just fooling myself, it's really a tractor tire!!

gutenberg
Sep 24, 2011 2:36 am

Supernan: I read your post with interest and would like to know more about these extenders, like, who makes them and will they work on Hollister products. This sounds like a problem I've been having, only never thought of your explanation, smart son you have there, Ed.

supernan
Sep 24, 2011 7:29 am

Hi Ed, I get my flange extenders from CliniMed. They are called Hydro Frame WAF H33 flange extenders. I get 20 to a pack. I have used them with Hollister bags with no problem. Hope that this helps. I would love to know if this helps. Jenny

Kerry
Sep 24, 2011 9:13 am

Greetings all. I find this product fantastic for those who love watersports or just for general daily security wear time of pouch. My personal favorite is made by SALTS - SecuPlast Hydro security strips (Product code SPH1). These will fit to most flange types and are so easy to attach, just smooth them onto the skin around the stoma to cover all the flange or half peristomal skin half flange as required. When swimming, I use up to 3 to cover all around the flange. Skin must be dry before applying, I let half an hour pass so they sit well... so, just pat dry after a swim etc. It may last another day!! Hope this is useful. xx Kerry

lyricalaska
Sep 25, 2011 3:48 am

Hi! My screen name lyricalaska is because I'm a lyric soprano and live in Alaska. My real name is Carmen. I'm half German and half French. Blonde hair, blue eyes, short and all that. I used to tell my patients I was the only Carmen they'd meet who has fair skin, blue eyes, and blonde hair who is a lyric soprano. LOL People think I'm Spanish or something.

mooza
Sep 25, 2011 8:47 am

That's pretty cool, lyricarmen. Lol, I'm not that far from the South Pole. Lol, brrrr... I'm 5'3" so a little short, but hey, we do stand tall, I guess. Hahahah. You're cool and a grandma, I just checked. Lol... xxwxafh33, pretty sure that's the correct code!! :) I checked our shelf at my Osto Association... Mooza... Aust.

lyricalaska
Nov 03, 2011 4:58 am

I saw my surgeon and am going to wait on making a decision for a reversal. I'm just not sure about it at all. I don't relish having to deal with urgency and having to know where the john is and be able to get there rapidly without an 'accident.'

lyricalaska
Nov 03, 2011 4:58 am

Excuse my spelling error. The word "their" should be "there". Thanks for understanding!!

supernan
Nov 04, 2011 10:36 am

I can't say I blame you, Lyrical. It must be so tempting to just go for it, but there is so much to think about. After all, having one life-changing event happen is bad enough, then you have to go through it again. Life is never easy, but I am sure that you will do the right thing for you.

lyricalaska
Nov 08, 2011 7:56 am

I have another question...we are going to visit my husband's family in Oregon on Sunday and then on a cruise for a week (leaves 26 November from Ft. Lauderdale, Florida). We will then head for St. Louis, Missouri and perhaps Michigan (we have family there too). I don't know what to do to get enough supplies for all this time! They are so expensive!! I read all the suggestions on disposing of the stuff on a cruise ship and had planned to do that. Good info!! Thank you. I wish I didn't have this hernia. I don't know what to do to make myself more comfortable...it's uncomfortable. My surgeon said unless I have terrible pain, he doesn't want to do anything for it right now.

supernan
Nov 08, 2011 10:48 am

Unfortunately, I can't answer the first question about supplies as here in the UK, we get ours for free, and so the doctors will give extra prescriptions to cover holidays (I hope, as this hasn't come up yet with me!). As for the hernia, have you got a support belt? I know mine makes the world of difference to me, and I also sleep on my right side with a pillow to support the thing. I agree it is uncomfortable; it is like being 8 months pregnant permanently!! Good wishes for your holidays, and I am sure other people on this site may be able to help more.