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What Did They Tell You An Ostomy Would Be Like Before Surgery?

Posted by w30bob, on Mon Aug 12, 2019 6:23 pm

Hi Gang,

  Each time I read the replies to the topics on here I better understand what folks are going thru, ie, can't sleep, leaks, skin issues, etc, etc, etc, and I keep thinking back to the days before I was given my ostomy.  My docs really didn't say much at all about what an ostomy would be like, and I wasn't asking.  They mentioned it was always a possibility if they ran into issues during the surgery, but my impression was it was going to be a not so simple, but not impossible small bowel "take out the bad pieces and reconnect" type of operation.  When I went for my pre-op X-rays the technician was nice enough to lift his shirt, show me his ostomy and tell me it doesn't affect his life one bit.  I'd like to find that SOB now and smack him right in the kisser. 

  So were you better prepped for your ostomy than I was........or is everyone kind of left in the dark only to find out it's not so rosey on this side of the fence? Do you think the Docs even know all the crap we have to go thru?  I sure didn't.  And if I hadn't found this website I would still be thinking most folks have no issues with their ostomy, so it must just be me.  And let me be clear here........my issues are teeny-weeny compared to what many of you guys are dealing with.  So I'm wondering if Docs actually know how many ostomates are having problems?  I know many folks keep to themselves and only go to a Doc when things really get bad, so that's certainly a possibility.  Are you guys communicating your issues to your Docs? I'm going to have a long talk with the next Ostomy Nurse I see and find out if they know the difficulties we ostomates have.  I'm hoping they are fully aware.  If not we need to start speaking up!!  Let me know what you think.

regards,

bob

Reply by warrior, on Mon Aug 12, 2019 7:09 pm

good thread Bob. Hows it hangin,dude? Decided to go belt free today and just let hang south. of course well covered by two shirts. Felt,free. Maybe its the same way going bra lessi  no time to investigate what a stoma or bag was. You tube showed these happy yuppies drain in their bags over toilet. And changing the appliance.. That's all I had to go on.. Ostomty nurse came in to,show me what everything was, and where it was going.

 

Ostomy nurse is always referred to by doctors b/c doctors only know removal and replacement ( or just removal. ) just like certain handicaps, deafness, blindness, amputee, etc, how can any doctor begin to understand that stuff.

no doctor can honestly say " been there done that". But at this site, u can bet your bippy, by asking here, your question, you'll get an eye full.

 

 

Reply by Puppyluv56, on Mon Aug 12, 2019 8:43 pm

Bob, having worked in Oncology for many years , I knew what a colostomy was but zero details and had absolutely no reasons to investigate. I would never in a million years believed that I would be here today with an Ostomy. Because my cancer is so aggressive, and presented in a rare place, the rectum, there are no quidelines for my doctors to go by and they choose to be very aggressive in treatment. Chemo first, then surgery. I had not decided until the week before it was scheduled to actually go thru with it. There are few people to talk to at the hospital about what will happen or what it is like. They really don’t know because they have not walked in these shoes. Yes I was shown how to put on a pouch but that was before an poo started to make its way that far down. Did she mention what to do with it then or how many times you would be cleaning shit up off the bathroom floor because you see clumsily empting the pouch to the beat of your ability! It does not take long to find out what not to do but finding what to do prior to needing the information would have been great. I stumbled upon this website a month or two Into the process and you are usually a pro by then! Most surgeons don’t have time to talk to you in what you want to discuss and refer you to Ostomy Care nurses. I complained to my surgeon about the lack of support there and he was furious to hear it so that tells me he was not really in tune with who he referred me to. I deal with what I have and lead a very full life so it is not all bad and after a year and a half, y Ostomy is not always my first thought when planning fun or vacations. It is what we make it to be and God know EVERYBODY on this site has been through more than they could ever express, we are stronger for it!Unless any one has had family members with an Ostomy and knew the real deal prior to their Ostomy, I think we all went into this clueless. I don’t mean we didn’t know the facts, we just didn’t know 

Reply by Bill, on Tue Aug 13, 2019 1:59 am

Hello Bob. Thanks again for a very interesting and pertinent question and for stimulating some great replies. 

My own take on this was that I opted for what they euphamistically call 'elective-surgery', which,  from their point of view, meant that I was 'asking for it and therefore 'wanting' it'. ( who the hell would 'want' this?)

I felt the need to have a stoma IN ORDER TO MANAGE THE INCONTENCE WHICH RESULTED FROM PREVIOUSLY BOTCHED SURGERY and I somewhat resented the implication that I was 'happy' to have it done.

They expained the surgical procedure pretty well but I had to ask all my own questions about what happens afterwards. They seemed surprised that, from my perspective, I was only going to have the surgery if I COULD IRRIGATE AFTERWARDS. So, they were forced to explain that procedure before surgery. I was pro-active in getting stoma nurses to visit and if they did not do so, I would make appointments to see them and pump them for information and support. From the beginning, I was not going to let other people ( who had not had the problem first-hand) dictate to me what I should and should not do with my own body. This was one of the reasons why I joined this site, because I felt the need to talk to people with first-hand experience of the problems which may or may not arise in the 'real' world. 

For those who have faith and belief in the medical profession, it must be comforting to listen and take their advice. For people like me who have suffered at their hands and are sceptical about their abilties and advice, it is to ordinary people I turn to for advice and guidance on most stoma matters.

I do like to read through the 'COLLECTIONS' section for all the many conversations and communications people have had on a variety of subjects in the past. This is like a library of information which I can dip into from time to time without having to wait for replies to current posts.

I have done a lot of experimenting for myself and some of the stuff I would not recommend to anyone else because it has been downright dangerous. However, I eventually found out what was 'right' for me.  My stoma life is now probably as good as it is likely to get and I lead a relatively full and active life (for my age and other disabilites). The stoma nurses have always listened to my rantings and given me practical advice and assistance. I don't expect anything from surgeons, other than doing their jobs within the very narrow focus of their immediate attention. 

Sorry about the rant, but your question took me back to where I thought I had moved on from.

Best wishes

Bill  

Reply by w30bob, on Tue Aug 13, 2019 5:57 am

Hi Bill,

  Thanks for the reply.  Sorry if I brought back to a bad place. Your reply, and a surprising number of others, mentioned "botched" surgery.  I find it alarming how many folks on here have used that term in posts on this forum.  I realized very early on that the medical surgical profession was no different than any other profession, meaning the talent of those in this line of work varied from true master craftsman to absolute hack. I've been fortunate enough to personally know people in the medical profession who have guided me to the craftsmen and helped me avoid the hacks. But I've always wondered about how those without that insider info made out.  Unfortunately I'm finding out the answer is not so well.

  Knowing what I know now about doctors, surgeons and the medical profession in general, I can say I have very little respect and admiration for the majority of it all. The docs I see currently are top notch (IMHO), but I didn't get lucky......I had to do a lot of research, quickly ditch those who I was not impressed with, and network with nurses and folks in the medical field to find the "keepers".  My point here is not to gloat, but rather to let younger folks reading this know that if you think that you can go to any doc, or just show up in an ER without having the names of a few good docs to drop, you are NOT in good hands. It shouldn't be this way.....but it is. Many learn this too late, but everyone eventually learns it.  If this helps even one of you reading this then it was worth writing. Be proactive in your healthcare because ultimately only YOU are responsible for your care. 

Regards,

Bob

Reply by iMacG5, on Tue Aug 13, 2019 6:10 pm
Puppyluv56 wrote:

Bob, having worked in Oncology for many years , I knew what a colostomy was but zero details and had absolutely no reasons to investigate. I would never in a million years believed that I would be here today with an Ostomy. Because my cancer is so aggressive, and presented in a rare place, the rectum, there are no quidelines for my doctors to go by and they choose to be very aggressive in treatment. Chemo first, then surgery. I had not decided until the week before it was scheduled to actually go thru with it. There are few people to talk to at the hospital about what will happen or what it is like. They really don’t know because they have not walked in these shoes. Yes I was shown how to put on a pouch but that was before an poo started to make its way that far down. Did she mention what to do with it then or how many times you would be cleaning shit up off the bathroom floor because you see clumsily empting the pouch to the beat of your ability! It does not take long to find out what not to do but finding what to do prior to needing the information would have been great. I stumbled upon this website a month or two Into the process and you are usually a pro by then! Most surgeons don’t have time to talk to you in what you want to discuss and refer you to Ostomy Care nurses. I complained to my surgeon about the lack of support there and he was furious to hear it so that tells me he was not really in tune with who he referred me to. I deal with what I have and lead a very full life so it is not all bad and after a year and a half, y Ostomy is not always my first thought when planning fun or vacations. It is what we make it to be and God know EVERYBODY on this site has been through more than they could ever express, we are stronger for it!Unless any one has had family members with an Ostomy and knew the real deal prior to their Ostomy, I think we all went into this clueless. I don’t mean we didn’t know the facts, we just didn’t know 

Hey Pup, it seems like it eventually worked out very well for you as it did for most of us.  Also giving a "thumbs up" to your picture.

Thanks for sharing,

Mike

Reply by iMacG5, on Tue Aug 13, 2019 6:18 pm

Hey Bob, your advice is so valuable.  I don't know what the statistics are but while working at a hospital for nine years I often heard the suggestion to avoid ER surgery at all costs unless the "on call" surgeon is a CR specialist.  There are numerous folks with ostomies because an ER physician slipped, went too deep or just screwed up.  I had the advantage of knowing who the good ones were and was able to choose accordingly.

Mike

Reply by w30bob, on Tue Aug 13, 2019 6:48 pm

Hi Mike,

  Wow.........I knew mistakes were made, but I was under the impression they were far and few between.  Seems I've been a bit delusional all these years.  When I was a kid growing up my neighbor was the head nurse at the local hospital ER, so she knew everyone at the hospital.  When I first got my Crohns (in correctly diagnosed as UC) she got me to the good docs.  Since I didn't have a bad doc I didn't know if she was just bullshitting me or if all the docs were good.  Hey, I was 25 and had never stepped foot in a hospital or seen a doc for anything up to that point.........so I was obviously naive.  Then one year my insurance changed and my good Gastro wasn't in the plan.  So thinking they were all good I went with somone else.  Needless to say my condition worsened to the point where my neighbor noticed, called my old doc, and he called me to tell me to get in to see him ASAP.  I told him I couldn't because he wasn't in my insurance plan and he said don't worry about the money, just get into his office tomorrow.  So I went and saw him and he got me back on meds that worked at the time.  Meanwhile the new Gastro I had been seeing killed a 16 year old girl by prescribing her the wrong meds.  It was at that point that I realized you had to have an "in" with someone in the medical community or you were playing roulette with the docs out there.  That's why I always feel bad when I see folks blindly following what their docs tell them, without at least questioning his reasoning and getting a second opinion first.  Hindsight is always 20-20, but for me I learned my lesson.  I always see at least 2 Gastros each year, one from Hopkins and one from Georgetown in DC.  No more fooling around with the local docs for me.  I don't have any more guts I can afford to lose, so it's entirely up to me to do what I have to do to keep what I've got.  I just wish I was wiser back in my 20's.  If I was I might not be here with you fine folks right now.  Or maybe I would....who knows?

thanks for the reply,

bob

Reply by Pirrip, on Wed Aug 14, 2019 12:01 pm

The first thing when I awoke from surgery, there was the surgeon zooming up to my groggy face with, "i cut the wrong bowel, I'm afraid you have an ostomy. You had a lot of fibrosis" (my fault then)

      But hey, I'm the right side of the grass! Apparently intestines are very fragile, have a thin skin (like sausages), and if only nicked, are fucked. they split! I was told by another surgeon.  All this despite being fitted with a transducer at the site of the cancer, to enable location! ah well..... still alive!

    Best tip I have found (after two years), is to get a bag to stick tight for days and days, clean stoma (no soap) water and muslin is plenty. dry with cloth then continue to rub the skin where you stick your bag. rub rub rub untill the top  dead skin cells come away and form little rolls. you can feel when you are down to good new skin. last wipe over, heat up your appliance till nearly hot, peel off the blanking paper and whack it on. hold it tight for half a minute and your good to go. Ten days later use glue -away stuff, and do over and over and over and over.... lol!   what fun it all is....

Reply by Puppyluv56, on Wed Aug 14, 2019 1:10 pm

pirrip, 

Sounds like you got the whole process down to a science! 

Puppyluv 

Reply by w30bob, on Wed Aug 14, 2019 11:04 pm

Pirrip,

  I always say go with what works.  But if there are any Dermatologists out there reading your post they either just fainted or lost their lunch all over the keyboard. Essentially what you are doing is destroying the outermost layer of your skin, the Stratum Corneum.  It's made up of dead skin cells, as you sort of suggest, and folks spend a lot of time (and money) trying to remove that top layer of dead cells to look more "radiant".  But what's not usually told is that this layer is there for a reason, which is to protect the Epidermal layer just underneath it.  By stripping away the protective layer bacteria are now free to wreak havoc on the unprotected Epidermis.  Again, it if works for you stick with it.  But for others who may want to replicate what you describe I'd suggest they be careful.  Once infected, the Epidermis will have a tough time healing under a bandage and not exposed to the air, so I'd suggest they try it on a small section of skin first and see how it goes.  You don't want to find yourself heading down a slippery slope with the skin around your stoma because your healing options are quite limited if you have to wear a barrier/wafer 24/7.  I can just picture some young ostomate rubbing his skin raw and then trying to get their barrier to stick to that red oozing skin.  Yikes!  Hey, just my 2 cents........so take it for what it's worth. 

regards,

bob 

Reply by iMacG5, on Sat Aug 17, 2019 2:58 pm
w30bob wrote:

Pirrip,

  I always say go with what works.  But if there are any Dermatologists out there reading your post they either just fainted or lost their lunch all over the keyboard. Essentially what you are doing is destroying the outermost layer of your skin, the Stratum Corneum.  It's made up of dead skin cells, as you sort of suggest, and folks spend a lot of time (and money) trying to remove that top layer of dead cells to look more "radiant".  But what's not usually told is that this layer is there for a reason, which is to protect the Epidermal layer just underneath it.  By stripping away the protective layer bacteria are now free to wreak havoc on the unprotected Epidermis.  Again, it if works for you stick with it.  But for others who may want to replicate what you describe I'd suggest they be careful.  Once infected, the Epidermis will have a tough time healing under a bandage and not exposed to the air, so I'd suggest they try it on a small section of skin first and see how it goes.  You don't want to find yourself heading down a slippery slope with the skin around your stoma because your healing options are quite limited if you have to wear a barrier/wafer 24/7.  I can just picture some young ostomate rubbing his skin raw and then trying to get their barrier to stick to that red oozing skin.  Yikes!  Hey, just my 2 cents........so take it for what it's worth. 

regards,

bob 


Hey Bob, your 2 cents would be priceless to anyone who avoided the disasters that might come from parastomal skin problems.  So glad it works for Pirrip but I would be as careful as you suggest.

Respectfully,

Mike

Reply by NancyAnn, on Mon Aug 19, 2019 1:02 pm

Hello again Bob,

 

I had my surgery when I was 2 years old and I am sure my Mother and Father were totally confused about what was going on. I know they now have patien visitors you can talk to before your surgery and I am one of them. They will supposedly match you up with someone who has the same surgery as you are getting so you can prepare them. You can't talk "medical" things because everyone is different but how you felt aftwards and things like clothes and what you can and can't do ect. 

I feel good I have helped a few people in this regard. The problem is the doctors don't check into things likes this. I am thinking of taking my info to doctors offices and letting them know they can contact me.

 

 

Reply by medic361, on Mon Aug 19, 2019 1:19 pm

Simple, colostomy or death.

bj
Reply by bj, on Mon Aug 19, 2019 2:37 pm

Hello everyone! This is my first time posting. Guess this topic hit home - I tend to keep to myself with all this, although I read alot.


"Stella" was the result of a botched hysterectomy. He tore my bowel right at the pelvic floor. About 7 months after the emergency surgery – which, in addition to a surprise stoma, resulted in a large abdominal wound and second fistula (learned to LOVE wound vacs!) - the colorectal specialist took a turn at repairing the tear. It didn't work. A year later, the tear is still there and I am heading to University of Michigan hospital to try again. During the first year, I went to a wound clinic at least once a week and it was the Osteo nurse that saw me for both the wound and ostomy. She was wonderful, and so was the staff. She was there when I first woke up with the ostomy in the hospital and taught me how to take care of the basics, and I've always contacted her with any questions that arise. I've had to figure lots of things out on my own, and have learned to be pretty darn creative with osteo supplies. I've had gaps that I have to fill with pieces of adapt ring, and abcesses that I had to cover with gauze and adhesive before putting on the wafer so that they would close and heal. They were there via text to tell me if I had a good idea, or a really bad one. Even my home health care nurse was wonderfully helpful. She wasn't necessarily experienced, but she helped me troubleshoot! It sounds like I've been very lucky! I can't imagine jumping into this without regular support for the first 6-7 months! I still hope for a reversal as was originally planned, but at this point I have no idea what will happen. This new doctor is thinking that she will remove lots of bowel just to be safe. Ugh.


I am still active, but am ALWAYS worried about how Stella will behave out in public. I am an administrator at a small liberal arts college and my biggest fear is Stella speaking out while at a meeting. I made my first long journey with Stella this summer, and I was definitely anxious. No one can really take that anxiety away when you have an ostomy that is always foremost in your thoughts. Anyway, my daughter decided to get married in Alaska. I live in Michigan. So I took my son and we took a train across country both ways. And also flew from Seattle to Anchorage. It all went well! I did a complete appliance change on the train (had a sleeper) and in the hotel. It was a bit interesting on the moving train, but ultimately worked out fine! It helped me feel more confident with some aspects. I suspect that Stella will change how I feel about dating and relationships, and has definitely made life so much more complicated. But I did - and do - have ostomy support when I need it. I am so sad to hear that so many did/do not. However, I agree that the doctors do the surgery thing, but really know very little about the day-to-day workings of the ostomy. I had one who wanted to see the stoma, so had me lay down, head lower than body, and opened the bag part of my 2-piece system. That was a mess! I had to laugh at how surprised and embarrassed he was a making such a silly mistake. I knew it was coming, I wanted to see if he was really going to do it. He was. Good grief.
Sorry if I got sidetracked. I don't have it all down, but the support I've had has made me a little more comfortable handing my specific situation.

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