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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.

Reply by vanessa1970, on Mon Aug 19, 2019 2:40 pm

My surgeon at the Cleveland Clinic gave me the names of three women to call. The first was unbelievably negative and basically wanted to be dead. The other two were happy and positive. I chose to believe the last two because I had no choice but to have the surgery and be positive. I’m alive! And I have had the greatest years post surgery that I could have imagined!

Reply by looking forward, on Mon Aug 19, 2019 3:01 pm

lucky ( if you can call it that ) i had the best doc around and i knew that. he did an amazing job and except for my depression i made it thru. i have an illeostomy which is by far the worst of the lot. lots of stuff i cannot do and am only comfortable in stretchy stuff--certainly that was never me. but i am alive-- for better or worse  just hang in  that's what they say

Reply by Newbie Dana, on Mon Aug 19, 2019 3:08 pm

Hey, medic361 - I'm right there with you! After cancer surgery, chemo, and radiation, and a radiation-damaged colon that eventually perforated leading to severe peritonitis, I had exactly 1 evening to come to terms with the whole "ostomy or die, we can't get ahead of the infection" (after a week in the hospital with IV antibiotics, drains, and a whole mess that just wasn't working). So I literally had NO idea what after would be like, other than "alive". There were NO botched surgeries involved - in fact I have only the highest praises for my surgeon and everything he did for me from the initial cancer surgery (slice and splice) to the ostomy surgery. And I also have to say that the folks on this site have REALLY helped me get my act together and get my life back on track. I have to say that, especially considering the position I started from, I really have nothing big to complain about with regard to my ostomy and taking care of it and living life with it. I have got to the point where I mostly just don't let it get in the way of my life. Yes, I've had my share of leaks, blowouts, issues with pancaking, or what have you - but over the years I've had my share of non-ostomy issues in life as well. That's what life is, a series of problems and issues that you just have to deal with. Get laid off from your job - deal with it. Start 2 businesses and they both go belly-up - deal with it. Not making enough money to keep up with the mortgage - find a solution. Even if you only consider health issues, I have to say I'm having more ongoing problems with the neuropathy in my feet from the chemo than from my ostomy. (Ah, chemo, the gift that keeps on giving ...)

In no way do I want to sound like I am belittling your problems, Bob. Nor anybody else on this site. I know it is a struggle, especially at first. I know many of you still have issues, even after several years. But I also know that, no matter what situation you find yourself in, you can meet it with anger or with acceptance, with frustration or forebearance. It's not always easy, and I'm certainly no saint either, and the air still turns blue when I have to use up 4 bags of my 2-a-day allotment (thanks, Medicare) in 45 minutes. But this too shall pass (no pun intended) and I can get back to the more important things in my life, like family and friends, pets and gardening, and let my ostomy fend for itself.

Reply by HenryM, on Mon Aug 19, 2019 3:15 pm

Hey Bob:  Once again you've piqued my need to respond.  My doctor didn't tell me squat.  The bad part was...I was so out of it sick after being hospitalized for five months, I hadn't the wherewithal to even ask any questions.  He told me it was the only thing they could do to put an end to the pain and, having just turned 21 a few months before, I signed on the consent line.  I didn't have the foggiest idea what was to come.  Then I had to go thru years of very inadequate ostomy appliances until I finally managed to come across one that improved my daily life significantly.  Plus I had to deal with PTSD from all of it.  In short, my observation from doctors that I've dealt with over decades now is that they don't know much if anything about post-surgery issues for ostomy patients.  My most recent issue, an open, bleeding spot about an inch from the stoma, was solved very handily by an ostomy nurse that I found on-line.  The Pollyannas with ostomies that claim all is like it was are jerks because they were jerks pre-ostomy.  Hang in there, brother.   HENRY M

Reply by Susanne, on Mon Aug 19, 2019 4:30 pm

Hi w30bob

There is no doctor in the world who knows how it is to live with an ostomy - they only do the surgery.

I had ET nurses who were extremely helpful and I could go and visit them any time I had a question, and at the beginning I saw them a lot.  If it wasn't for them, I wouldn't know what I would have done.

I am now 2 + years after my APR surgery and my permanent ostomy.  LIfe is almost normal again and I am happy that I do irrigate which means I keep dry all day long and irrigate every night which takes about 15-30 minutes.  That is the routine of my life now. I only have a big bandaid on my stoma which works great for me.

Anybody who is a candiate for irrigation, go for it, it is the best and you are much more secure than always wondering if there is something in the bag.  At the beginning after surgery, I had to use bags and they were always leaking, it was horrible.

Now I am a happy irrigator.

Reply by annie2006, on Mon Aug 19, 2019 6:57 pm

My surgeon kept it low key and neutral. Here are your options, choose one. Everything after that was day by day. Fifteen years later and I'm still here.

Reply by Pirrip, on Mon Aug 19, 2019 8:47 pm
bj wrote:

Bo

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.

Bouquet
If only 'it' smelt like Roses
(Horse and Sparrow)
If only 'it' pleased our Noses
(Wide and Narrow)
All the problems that 'it' Poses
(Bow and Arrow)
And all the Worry, one Supposes
(Bone and Marrow)

Would be gone..........

Reply by bryancohnracing, on Wed Aug 21, 2019 2:02 pm

My doctor didn't tell me anything worthwhile and the ostomy nurses weren't very helpful either. Wound care helped a little bit but they too were mostly clueless. 

I was miserable for months, no, make that the first year and a half with constant blow outs, skin irritation to the point of nothing sticking, bleeding skin, massive weight loss because I found the only way to live was not to eat and so on. 

I got lucky one day while visiting The Ostomy Center in Kansas City and met the owner Steve. While he doesn't have an ostomy he knows thousands of people who do and his help, advice and recomendations have been a life saver. 

However in the end having the ostomy (colon cancer after 28 years of ulcerative colitis) simply moved the problem from the rear to the front. i eat a very restricted diet due to over active bacteria in the small intestine and stomach so I've not gained any of the weight back. That'd be great but it was mostly muscle mass that I lost. 

If I had this to do over again I can honestly say I'm not sure I'd go through with it. Complications have cost me the last 3 years of my life in many ways and as a life long asthma sufferer who has serious health issues related to that my life expectancy is in reality another 5-10 years max. As i've already outlived every prediction given to me by various pulmonologists who knows...

Are any of you ever able to not be conscience of the damn bag? I wear a hernia belt as well due to having a hernia at the stoma. There is no getting away from how this thing has effected every facet of my life. 

Sorry this sounds like a downer. I'm not. I still hike, race cars, work out etc. Eating sucks. And I simply can't ever escape the bag, so to speak. 

bryan, Topeka, KS. 

Reply by warrior, on Wed Aug 21, 2019 2:11 pm

Hi man. You're a tough cookie. Doing a heck more than I can do. Sorry about the eating part. That sux. Maybe just finding the right food will help. Hang in there. You will find what you seek here. Just be patient. Good luck.

ryancohnracing wrote:

My doctor didn't tell me anything worthwhile and the ostomy nurses weren't very helpful either. Wound care helped a little bit but they too were mostly clueless. 

I was miserable for months, no, make that the first year and a half with constant blow outs, skin irritation to the point of nothing sticking, bleeding skin, massive weight loss because I found the only way to live was not to eat and so on. 

I got lucky one day while visiting The Ostomy Center in Kansas City and met the owner Steve. While he doesn't have an ostomy he knows thousands of people who do and his help, advice and recomendations have been a life saver. 

However in the end having the ostomy (colon cancer after 28 years of ulcerative colitis) simply moved the problem from the rear to the front. i eat a very restricted diet due to over active bacteria in the small intestine and stomach so I've not gained any of the weight back. That'd be great but it was mostly muscle mass that I lost. 

If I had this to do over again I can honestly say I'm not sure I'd go through with it. Complications have cost me the last 3 years of my life in many ways and as a life long asthma sufferer who has serious health issues related to that my life expectancy is in reality another 5-10 years max. As i've already outlived every prediction given to me by various pulmonologists who knows...

Are any of you ever able to not be conscience of the damn bag? I wear a hernia belt as well due to having a hernia at the stoma. There is no getting away from how this thing has effected every facet of my life. 

Sorry this sounds like a downer. I'm not. I still hike, race cars, work out etc. Eating sucks. And I simply can't ever escape the bag, so to speak. 

bryan, Topeka, KS. 


ininh the right foods will help.

Reply by Simo, on Sun Sep 08, 2019 10:18 am

I had rectal cancer diagnosed 2016 i was told by the surgeon the chemo and radiation would cure it.  After treatment i was told I had been left with severe cell dysplasia nobody explained to me this was just the cancer waiting to happen again. 10 months later I was told the cancer had returned and if need an operation with a bag. 3 weeks later i was in hospital with not much idea of what had gone on, I thought couple of months and they'll fix it. 2 years later I've lost my 30 year career, I sit in the house most of the time. I hate it with a passion i can't accept it and most of the time want to die. Cancer cost me my whole life dignity being the worst thing to deal with. I'm now 57 and if they'd told me it would be like this I wouldn't have had it done. No one i knew asked how I was recovering from cancer Just have you got a bag on.Talk about insensitivity. Needless to say I've isolated myself from everyone. My last appointment with the surgeon. I explained how severely depressed i was he was actually offended saying but I saved your life. They have no idea (or care) how people feel they're just skilled with scalpels.

I'm currently being trialled with anti depressants none of which have been successful. So on it goes in waiting for a euricha moment I think it might be a long time coming.

3 years ago I was a slim attractive woman with a 30 year career with the UK government they dismissed me as an efficiency due to long term absence.

Is this it existing - what s the point.

Reply by Bill, on Mon Sep 09, 2019 3:14 am

Hello Simo. I am sorry to hear about your experiences with the medical staff but I am also not at all surprised at their somewhat callous attitudes to your reactions to surgery and lifestyle changes. 

I am not a great believer in medication for treating social/emotional and psychological problems brought about by the traumas of sudden lifestyle changes. It seems that prescribing medication is yet another way for medics to distance themselves from what is really going on within their patient's hearts and minds. Sure! it can sometimes help some people in the short-term, but, in essence, medication acts as  a temporary 'prop' which, if the underlying conditions are not resolved, will lead to a let-down as soon as it is taken away.

The personal problems you describe are very familiar to me and to many others who have had major surgery that has changed their lives so dramatically. They may be the result of surgery and/or  illness, but the main problems are often within ourselves and how we cope with the traumatic effects of 'trauma after-life', which is often described as Post Traumatic Stress.(PTS) Essentially, this condition can only be rectified by a reappraisal of our own stance towards our new set of circumstances. However, it can often be helped by finding someone else to 'listen' to what we have to say in an empathetic way (something that the medics seem to find difficult to do). Quite often, this listening role can be performed by close friends, but invariably the best solution is to find a professional who is well versed in the art of dealing with PTS. You do not have to continue to suffer in this way as there are a number of modern approaches to this problem which do not involve medication. 

When I was involved in this sort of work I used to encourage people to think about it as a DIY process which can benefit enormously from the input of people who have 'been there, done that and got the teeshirt'.

Many of my ex-clients were reluctant to come off medication because, by doing so, they would lose their welfare benefits  ( what an insensitive and uncaring system we have!). In order to resolve this dilemma I would prescribe 'SOCSAPINE'  at doses of 10ml x2 per day and 120ml when necessary. Nobody ever questioned the 'precription' or the doses so the problem of welfare benefits was resolved and the 'patients' gradually got 'better' by virtue of this regime. 

SOCSAPINE is an anagram for Self-Organised Common-Sense Alongside Participation In Normal Experiences; ml (regarding the doseage) is an abbreviation of 'Minutes Long'. Thus, they were being 'prescribed' a regime of helping themselves to regular doses of 'common sense' and practical experience of social participation.  However, they were not left on their own to undertake this task as I ran individual and group sessions to facilitate their learning in this regard.  They were 'taught' and encouraged to 'think' for themselves in a different way to that normally prescribed. This helped them to take control of their own wayward emotions and decide for themselves what life was going to be like in future, rather than allowing their thoughts and emotions to dictate how their lives would drift or become chaotic becuase it lacked appropriate control and management. 

I have long-since retired from my professional role as a psychologist but I feel sure there will be others still in service who can help you with this sort of problem - even if they do not make up social/psychological 'prescriptions' to help circumvent the ignorance of the benefits system. 

Best wishes

Bill 

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