I had my colostomy 2 years ago. Colon cancer. My surgery was all laparoscopically, even the rectum and anus. I am an overweight woman in her 70’s and my surgery was agreed by my surgeon and myself. I was lucky. Surgery has given me my life with my family. Getting used to changing my bag was ‘strange’ but what the hell get in with it.. I was given a special cushion for my poor butt. I was allowed home after 5 days and got on with it. I was lucky my hubby gave me all the help I needed. My stoma supplies all arrive on the date arranged. I can’t thank the nhs enough. Thanks Sydney for all your videos.
Hi Catherine. Thanks for watching and leaving a great comment. Isn't it marvellous to have wonderful partners that help. You seem to have a good attitude towards life and I wish you all the best.
After my ileostomy in the summer i was overwhelmed. I opted for the operation for the better quality of life, i cried in happiness , more because i'd woken up from successful surgery. The bag is what it is, and i'm totally glad that i took the decision, get well Sir. I wish you a happy new year too.
My partner is just about to go through this surgery and your informative videos have been so much help for him and me in coming to terms with what is about to happen.You are an absolute diamond bloke .Cheers.
Great video, I love your honesty 👍 I have had my ileostomy for two years and everything you have said is true to my situation I am also very glad to have had it done! I have my barbie butt surgery on Thursday 😬
Thank You for making this Video……In Today’s World we are seeing so MANY People with this and so Many are Young People…. There’s 1 Young Woman called Tiffanythinks she had Cancer and needed this Done and she has a Huge following and had Her surgery done right before Christmas so many people and myself WORRIED because we had to wait until she was able to Make videos again and it felt like forever until she did again…..She is doing so Well but doesn’t talk about it I believe For now it’s hard for her to talk about it…. Watching from Virginia 🌹
Hi. People find it hard to talk about. It is a huge life change. I talk about it with the aim of helping others with awareness, but also showing it's ok to talk about. Thank you for watching
This is really helpful. So many videos are from the USA which has different practices, so it's good to hear what goes on in the UK. I had my colectomy and permanent ileostomy in 2015 after ulcerative colitis leading to colon cancer, and they left a rectal stump. I have had 2 parastomal hernia repairs which both failed (the last one in 2018 led to sepsis and further hospitalisation). I was then referred to a different hospital in another town at the end of 2018. Since then it's been a comedy of errors and I've been waiting over 5 1/2 years for my operation to correct a complex parastomal hernia which is now spreading to my midline incision. They have decided that I need Barbie Butt surgery because there is still inflammation in the rectal stump which continues to put me at greater risk of developing another cancer. Your description of the aftercare in the UK is extremely useful. The next step in my journey is the pre-assessment with the anaesthetist, having seen the surgeon last week, and hopefully I will get a date soon, although I'm not holding my breath as we've been here before. You've given me some pointers to put on my list of things to discuss with the anaesthetist. Many thanks! Good to hear how well you have done, and that you have good quality of life now. IBDs are the pits, aren't they!
Sorry for the delay, how are things moving in terms of having barbie butt surgery? I know how you feel in terms of comedy of errors! I had some awful experiences where I was left in horrendous pain to the point of passing out because of errors, i have been left to dehydrate, oh the list goes on and on! 😂 but i have also had some exceptional care.
@@sydneystoma385 Thanks for your reply. I'm still waiting for my pre-assessment appointment and no date as yet for surgery. NHS is the pits these days here in the UK and I sometimes despair of it ever happening.
I have ibs, nothing else, and I've never had to consider this surgery for myself or anything scary like that, but your video was so comforting and informative that I felt reassured should that ever happen, there's your content to soothe the nerves! So thank you for making this info available to those that need it and those that were just learning! I'm so glad your quality of life is better now post op~ from South Africa
I was in hospital for two months following my abdominal perineal resection. For several weeks the dressing for the vac pump was changed in the operating theatre under general anaesthetic twice a week. Once they able to change the dressing in the ward with little or no pain I was sent home with the pump and dressings were changed by community nurses. Pump’s gone but still having dressings changed by the community nurses 5 months after the operation. Wound is just 2cm now. 😊
Apparently it's in the top five of most painful operations you can have. I can well believe that. The vac pump is superb. It really helps the process. I certainly didn't have mine changed under anaesthetic, having that and the dressings changed was so painful. My community nurse was lovely. It is incredible isn't it the way it heals. Glad you are nearly all healed. Thanks for watching.
Thank you for this informative video. I'm due to have this surgery soon due to advanced rectal cancer. Honestly I'm scared to say the least. I'm in the UK so this is very relevant to me. I will take on board all your advise which you have talked about so honestly. Kindest regards and good luck
Hi Kitty. I can understand you feeling scared and that's normal. It's a big operation which changes our lives forever. But so worthwhile and saves our lives. I am so glad the video has helped. If there is anything else I can help with then please feel free to ask. Wishing you all the best for the surgery and the future.
Thank you so very much for posting your journey…. It’s so very helpful … had my stoma placed In March 2022.. then it relapsed and became necrotic. Had revision. Day after revision , I had a mesentery bleed and woke in ICU with blood transfusions.. during the next year , my rectum and anus became stenotic and ceased to work. My surgeons both recommended the Barbie Butt procedure / this was carried out on February 21,2023. You are so right , it is bloody awfully painful . - 😢 Then on the 10th of March I had just been released from hospital on March 2 to attend physical therapy and have nursing care in a step down medical facility… , my wound dehisced ( opened up ) and then the packing commenced~ May I ask you , or any patients shaving had this surgery to describe your pain ? I’m about to head back to hospital as I can not manage the break through pain and bloody drainage. The nurses that come to my house are indeed wound care nurses however it’s obvious they’ve not had experience with this type of wound ~ one of them “ took out “ way to much of healed tissue which caused a great deal of pain and bleeding ~ the pain and bleeding seems to have changed drastically since he did this ~ I am completely gutted …. Please help 🙏🏼
Hi. So sorry for the delay in replying. How are you now? I agree that nurses have not been trained correctly to undress and repack these type of wounds. They should not be pulling out tissue that is healing. That is completely down to lack of training and that will be very painful. I experienced something similar myself, and then I would be in a state of panic everytime somebody came round to complete the changes. I was fortunate enough that my surgeon then showed my wife exactly what needed to happen. So my wife would then watch and make sure it was done correctly. If you are not comfortable then please go back to your surgeon and ask for help.
@@sydneystoma385 , thank you so very much for your kind words ~ very much needed and appreciated! I wish I had someone whom I could trust to watch and understand how important this wound bandage changes are … so very glad you have your wife’s Kern eye to watch for you ~ I’m thinking of putting up a mirror on the wall near my bed ….. seriously. Here in the states “ any nurse “ can perform wound bandage dressings/changes - it’s like a catch - all phrase and I truly am with you with these types of wounds should require a separate training of experience and expertise… I’ve been in hospital twice since my last writing ~ all commencing within days of having one of these changes. I have fired the one nurse who started the increased pain and bleeding… currently allowing just two nurses to do the changes however still looking for another agency altogether. I have taken your advice and returned to my surgeon and primary care for help … I truly appreciate you sharing your journey and again most certainly appreciate your response. So helpful knowing another person truly understands that of which I speak is not out of the ordinary nor am I a person who attempts going to hospital seeking pain medication- this opioid crisis here in the states has truly created a beast for those of us who truly need temporary medication help ! Meditation and breathing of course do help ~ still tho ~ it’s so disheartening to go to hospital for help and turn ‘round in 36 hours and one is booted out .. Once again, I’m going to have another listen to your videos as I’m finding myself in need of hearing the truth about the facts of this procedure and I’m the face of what we do go through , there is a happier ending in sight ! ❣️. Ps ~ please pardon spelling errors - I can not seem to edit my comment 😂- quite sure you will understand ~ also thank you for asking how I am doing now ~ I have a good attitude and am looking forward to the day I do not think of “ pain “ ! Willing to do everything I can do to make the very best life I can !
After my ileostomy reversed over 1 year ago (actually 13 months) I was overwhelmed. I have had no choice to undergo a surgery to remove a cancer on my colorectal over 1 year ago and now I got a new me and a new life as the cancer is not spreading but I still, am under my surgeon surveillance for 5 years. The stoma did not give me any issue. I used to change it once a day over 4 months. I have had my colonscopy recently included the blood test. All seems clear and my next appointment for colonscopy will be in 3 years time instead of every year.. and my blood test every 6 months over 5 years. I did not want to watch the procedure when they reversed my ileostomy...but not like you!....for that I do admire your courage and strength.
Hi. Fantastic news to hear everything seems clear. I am very happy for you. Thanks for watching and leaving a comment and I wish you all the best moving forward.
Just wanted to say thank you for taking your time to make great informative videos for people in need, its great to see someone just making videos with the purpose of helping others without wanting anything in return 👍 My partner had surgery 5 weeks ago now, her process was very different to yours, she had laparoscopic surgery and her butt wound was already closed when she came out with dissolving stitches. They also already removed her epidural when she left theatre and put her on a morphine pump instead with a button pressed by user. I thought this was wrong as she was in agony but apparently the epidural is only to prevent unwanted movement whilst the robot and surgeon are working near vital organs and nerves deep inside. she had two holes cut through her butt cheeks and tubing about 8 inches deep going into the area of surgery inside and these drained away all the fluid into vacuum pressure bottles for 8 days until it stopped draining and then they pulled the tubing out. From my observations this looked to me a lot less painful process than you've described with the packing and pump method. Also just wanted to point out my partner couldn't wee for 3 weeks after surgery and had to go home with a catheter in her bladder which the nurses came and removed and luckily she could wee at 3 weeks, apparently this is normal due to swelling and damage in the pelvic area. Youve really helped me to learn and help my partner better over the last few weeks and i really appreciate it, thank you. I just thought id post my partners experience which might help other people who are having laparoscopic surgery and worried about the process. As you say at the time its extremely painful and a shock to get used to the bag chages etc... but it soon becomes normal, my wifes currently at tesco with my daughter whilst im making the dinner so it soon becomes manageable, dont hope for too much too quickly though, she cant drive as butt is still very sore and she has to walk very slowly with breaks, we borrowed a wheel chair recently to take her xmas shopping so dont expect loads of long walking at 5 weeks as its too painful and will open the wound possibly. Really appreciate it, thanks again 👍
Thank you so much for the kind words, and thank you for sharing your wife’s experience. I do know they like to get people off epidural quite quickly. On a previous surgery I had the epidural for a few days and i couldn’t stand it. I did prefer the morphine on pump. Morphine is terrible for stopping you peeing, i have been in agony trying to pee but it wouldn’t come out. I once had a bad experience of a catheter so I am reluctant to let them put another one in when i am using morphine. It is a slow process healing, but there is no rush. It sounds like you support your wife well which is great. So many people have unsupportive partners and that must be awful for them. I wish you all well and have a fantastic family Christmas together.
@@terrysmith3537 hi fellow warrior 👋🏼 hope you don’t mind me wishing you the best with your surgery and recovery ~ how is it going if you don’t mind me asking ? I just had the barbie butt surgery February 21 2023 and would like very much to have someone to chat with. It’s such a major procedure and comes with lots of experiences the professionals do not tell you about …. Let me know , I hope to hear from you friend.
Sydney your video is so helpful ! Sharing you experience is giving me courage to have the Barbie Butt surgery. Total colon removal was 2 yrs ago. My surgery will probably be mid July,2022. I didn’t think the colon removal was all that painful. I have been sick since about 1970…this surgery coming up scares me though! Your positive video is a great help.
Thanks for your honest information. You make having a stoma so much more acceptable and very informative. Had my surgery 3 months ago and had little or no information about coping with the stoma and products...had no idea how to order bags etc so your videos have been super informative. Do you do any videos on how you experience and cope with physical changes? I am still having periodical bouts of being sick...with no notice! Also have deep stomach pain when I sit or stand ....very brief. I had a stoma and removal of anus, rectum and sigmoid colon with an exterior flap...huge surgery on my right buttock. Also due to have a colonoscopy through my stoma in the next few months. Is it painful?
Also some of my pelvic floor removed. When do you start doing activities etc...I am a very Ctive person and am having a CT scan in a week for a hernia which looks like it's developed under the stoma... Any advice? Videos?
Hi Hilary. It certainly sounds like you have been through a tough time. I found the medical world really do not provide enough information about life after surgery and living with a stoma. These are some of the reasons I set this channel up. What do mean by physical changes? If I have not covered it in any of my videos I will do one. In terms of colonoscopy through the stoma I have one tomorrow!! 😁
Hi Hilary. Hernia advice is not something I can do. I have not had one, so my knowledge in this area would not be worth sharing. I know there are hernia stoma belts that can assist.
Thanks for this good information had a stoma for 16 years now the rectums had it so painful need the Barbie butt that packing sounds bad. can’t take the pain of the stump no more might have to do it this year I get on with the bag fine my stumps never been great after the first surgery all them years ago tbh.
Not every surgeon uses the packing method, but its only short term pain for long term gain. It sounds like you have made your mind up, go for it and get some relief from the pain!
Many years ago I had a minor operation and I had experience of District nurses. It was not good. If they did turn up they did not know how to change a dressing. Just to let you know if you do need a district nurse make sure you have all of your equipment because the district nurses do not carry anything (or the ones I had didn't).
Sorry to read you had a poor experience. It doesn't give you confidence when a district nurse doesn't have everything needed. Fortunately I had a very good district nurse.
Sounds like a different surgery to mine that was done 6 weeks ago. My bum was done by robotics, but that's very new, I think I was about the 8th for my surgeon. Just amazing technology. No packing. The wound is closed straight away. The drain was in for 5 days (no vacuum machine), and removed before I was released on day 5. 6 weeks in and I'm now pretty active, but the wound is still sore, but I can sit down for dinner, and drive a reasonable distance. My wife called me Mr MonoButt to start with, but now the swelling has reduced I have a normal bum profile. I do get the phantom desire to poo! Getting used to the stoma, a bit leaky, and about to try the convex bag. Thanks for your video on that. Really helpful. You are right, you have to get familiar and confident with the stoma. Great advice. I look at it as a journey. Much more comfortable with it now. Thank you for your videos. They helped me prepare, and now to continue my journey. I do need to be patient, so your 'time' advice is wise. Hope you are well.
Hi David. Wow surgery done by robotics! That's amazing. Technology is incredible. Glad the swelling has come down and you are no longer monobutt 😃. In the early days patience and just taking things slowly is key. Thank you for watching and I am really pleased my videos help people. That's why I do it. I am not here to be a social media star, it's just about helping people for me. That's why I don't put out loads and loads of content. I only ever want to put content out that I think will help. Good luck with your journey and if there is anything I can help with just ask.
hello i envy you right now my Barbie but was done 4 weeks ago by an excelent traditional surgeon. because i hve cancer prob more removed than for people who have chrones im in agony my wound doesnt seem to be closing i have a sealed dressing with a pump changed twice a week and its apparently in great condition but still huge. please some one help
@@leandamobile Sorry to hear this. Despite having the robot surgery my wound has partially reopened. That was in April. Chemo and Radiotherapy have delayed healing. But… it will heal. Stick with what the nurses tell you, eat lots of protein. Mine was rectal cancer so lots of reconstruction. Just have to be patient. My thoughts are with you.
I have 5 more chemotherapy treatments then I get an ileostomy. I am in stage 3 cancer plus I have crohns, plus ibs. In all honesty I'm terrified, i just turned 41 march 2nd. I found out I had cancer this past Christmas morning. After surgery how long will I expect to be in hospital.
Hi. Sorry for the delay in replying. You should be out of hospital within the week from surgery. Home is the best place to recover. Hope all goes well for you.
i have cancer but the result is the same my rectum and anus is removed 4 weeks and im struggling with a huge horrible wound. the colostomy is fine but i hve a huge hole which is difficult to dress an seal and i hve a pump. im so much discomfort and pain please help
Hi. Thanks for watching. Ok so in terms of dressing the wound do you have a nurse that comes and does this for you? I had a nurse that came to my home every few days to change the dressings. The pump should really aid the healing process, is the pump the one that is sealed over the rectum area and pulls out any unnecessary fluids? This really helped me. It is very painful and you should be being supplied with good pain relief medication. After four weeks there should be a noticeable change in the wound. If there is not you must go back to your medical team. I really hope you are not being expected to change the dressing yourself. Tell me more about that. Are you in the UK?
thank you for replying and apologies for my late reply. ive been in and out of hospital with infections and stuff. i wont go on about the other things not fair to take up so much of your time. I do have a portable pump, its 3m activ.a.c, a heavy thing to deal with with everyday. My 'hole' gets dressed twice a week, i go to out patients. Yes I'm on pain medication oxycontin ect. the meds make me constipated so of course i take laxatives every day i now have dioreah most days with horrible nausea and colicky feelings and so on back to the massive wound. yes of course its healed up a bit, but it seems that its going to be many more months until its healed. i don't know why its so slow? Im advised to cut the sugar and carbs and to eat as much protein as possible, so i eat eggs for breakfast and a large amount of meat in the evening. the issue is that its so sore and uncomfortable. perhaps its because i have Cancer that healing so slowly. is there any thing else that you can think of that i should do. i love your videos, your voice is calming and you are practical as well as having a great sense of humour. Thank you for doing them, you help a lot of people. best wishes Leanda oh yes i live in London.
@@leandamobile How's your wound doing. I had to have the whole barbie butt surgery September of 2021 due to colon cancer. My wound just now started healing up completely. It sure is a slow healer. Drink premier proteins once in the morning and once at night. I was putting this sort of silver dressing to absorb any moisture, however, it was keeping the wound very moist and I noticed significant improvement and healing washing the area in the morning and drying it and then washing it with cold water and night and drying it. Letting the natural air and moisture heal it natural. It's very frustrating waiting for it to heal and it can take a long time but it will get there. Hang in there and if you have any questions feel free to reach out.
Hi Roger. I wasn't impressed with their customer service and there reluctance to let me sample other bags without my stoma teams consent. I have charter very good, Respond are outstanding, Respond seem to really care about people and provide so much help. I just didn't get that feeling of care from Fittleworth.
@@sydneystoma385 i do use them and im finfing there customer care great howver their relationship with my gp id difficult and often my order is delayed i gather because the gp hasn't signed off on it so i dont know.
Do you ever have rectal discharge ? I have had the same surgery as you 5 years ago but still have slight discharge even though I don't have a rectum or an anus. I was told it is normal in some people but it is very inconvenient. I use panty liners which contain it. Just wondering if it will ever stop?
Hi Rosemary. No I don’t have any discharge as there is nothing there for discharge to come out off. My rectum is completely removed and healed up. The easiest way to explain it is say it looks like a barbie doll butt hence it’s often known as. Barbie Butt surgery. The rectum is completely sealed.
I have had a joupuch for 25 years, i have had qn ileostomy b4 now my quality of life is gobe so having the op to remove it and barbie butt in 6 weeks... its the barbie butt op that is daunting now. I dont mind the ileostomy at all and yes its like an alien 😂😂 😂😂
I had my colostomy 2 years ago. Colon cancer. My surgery was all laparoscopically, even the rectum and anus. I am an overweight woman in her 70’s and my surgery was agreed by my surgeon and myself. I was lucky. Surgery has given me my life with my family. Getting used to changing my bag was ‘strange’ but what the hell get in with it.. I was given a special cushion for my poor butt. I was allowed home after 5 days and got on with it. I was lucky my hubby gave me all the help I needed. My stoma supplies all arrive on the date arranged. I can’t thank the nhs enough. Thanks Sydney for all your videos.
Hi Catherine. Thanks for watching and leaving a great comment. Isn't it marvellous to have wonderful partners that help. You seem to have a good attitude towards life and I wish you all the best.
After my ileostomy in the summer i was overwhelmed. I opted for the operation for the better quality of life, i cried in happiness , more because i'd woken up from successful surgery. The bag is what it is, and i'm totally glad that i took the decision, get well Sir. I wish you a happy new year too.
Happy new year Paul, thanks for watching and really pleased you are happy for making the decision.
My partner is just about to go through this surgery and your informative videos have been so much help for him and me in coming to terms with what is about to happen.You are an absolute diamond bloke .Cheers.
Thank you very much. I hope everything goes well for your partner.
You have my deepest respect, my friend, my deepest respect.
Cheers Kenny. Thank you very much.
Great video, I love your honesty 👍 I have had my ileostomy for two years and everything you have said is true to my situation I am also very glad to have had it done! I have my barbie butt surgery on Thursday 😬
Good luck with the Barbie Butt surgery! Hope it goes well.
Thank You for making this Video……In Today’s World we are seeing so MANY People with this and so Many are Young People….
There’s 1 Young Woman called Tiffanythinks she had Cancer and needed this Done and she has a Huge following and had
Her surgery done right before Christmas so many people and myself WORRIED because we had to wait until she was able to
Make videos again and it felt like forever until she did again…..She is doing so Well but doesn’t talk about it I believe
For now it’s hard for her to talk about it….
Watching from Virginia 🌹
Hi. People find it hard to talk about. It is a huge life change. I talk about it with the aim of helping others with awareness, but also showing it's ok to talk about. Thank you for watching
Thanks so much for sharing your story, I’ve had my stoma for 3 months now and everything is going well ⭐️
Thanks for watching and glad to hear everything is going well.
This is really helpful. So many videos are from the USA which has different practices, so it's good to hear what goes on in the UK. I had my colectomy and permanent ileostomy in 2015 after ulcerative colitis leading to colon cancer, and they left a rectal stump. I have had 2 parastomal hernia repairs which both failed (the last one in 2018 led to sepsis and further hospitalisation). I was then referred to a different hospital in another town at the end of 2018. Since then it's been a comedy of errors and I've been waiting over 5 1/2 years for my operation to correct a complex parastomal hernia which is now spreading to my midline incision. They have decided that I need Barbie Butt surgery because there is still inflammation in the rectal stump which continues to put me at greater risk of developing another cancer. Your description of the aftercare in the UK is extremely useful. The next step in my journey is the pre-assessment with the anaesthetist, having seen the surgeon last week, and hopefully I will get a date soon, although I'm not holding my breath as we've been here before. You've given me some pointers to put on my list of things to discuss with the anaesthetist. Many thanks! Good to hear how well you have done, and that you have good quality of life now. IBDs are the pits, aren't they!
Sorry for the delay, how are things moving in terms of having barbie butt surgery? I know how you feel in terms of comedy of errors! I had some awful experiences where I was left in horrendous pain to the point of passing out because of errors, i have been left to dehydrate, oh the list goes on and on! 😂 but i have also had some exceptional care.
@@sydneystoma385 Thanks for your reply. I'm still waiting for my pre-assessment appointment and no date as yet for surgery. NHS is the pits these days here in the UK and I sometimes despair of it ever happening.
I have ibs, nothing else, and I've never had to consider this surgery for myself or anything scary like that, but your video was so comforting and informative that I felt reassured should that ever happen, there's your content to soothe the nerves! So thank you for making this info available to those that need it and those that were just learning! I'm so glad your quality of life is better now post op~ from South Africa
Thank you for your kind words
I was in hospital for two months following my abdominal perineal resection. For several weeks the dressing for the vac pump was changed in the operating theatre under general anaesthetic twice a week. Once they able to change the dressing in the ward with little or no pain I was sent home with the pump and dressings were changed by community nurses. Pump’s gone but still having dressings changed by the community nurses 5 months after the operation. Wound is just 2cm now. 😊
PS the district nurses in my part of Australia are fantastic.
Apparently it's in the top five of most painful operations you can have. I can well believe that. The vac pump is superb. It really helps the process. I certainly didn't have mine changed under anaesthetic, having that and the dressings changed was so painful. My community nurse was lovely. It is incredible isn't it the way it heals. Glad you are nearly all healed. Thanks for watching.
Thank you for this informative video. I'm due to have this surgery soon due to advanced rectal cancer. Honestly I'm scared to say the least. I'm in the UK so this is very relevant to me. I will take on board all your advise which you have talked about so honestly.
Kindest regards and good luck
Hi Kitty. I can understand you feeling scared and that's normal. It's a big operation which changes our lives forever. But so worthwhile and saves our lives. I am so glad the video has helped. If there is anything else I can help with then please feel free to ask. Wishing you all the best for the surgery and the future.
Thank you so very much for posting your journey…. It’s so very helpful … had my stoma placed In March 2022.. then it relapsed and became necrotic. Had revision. Day after revision , I had a mesentery bleed and woke in ICU with blood transfusions.. during the next year , my rectum and anus became stenotic and ceased to work. My surgeons both recommended the Barbie Butt procedure / this was carried out on February 21,2023. You are so right , it is bloody awfully painful . - 😢
Then on the 10th of March I had just been released from hospital on March 2 to attend physical therapy and have nursing care in a step down medical facility… , my wound dehisced ( opened up ) and then the packing commenced~
May I ask you , or any patients shaving had this surgery to describe your pain ? I’m about to head back to hospital as I can not manage the break through pain and bloody drainage.
The nurses that come to my house are indeed wound care nurses however it’s obvious they’ve not had experience with this type of wound ~ one of them “ took out “ way to much of healed tissue which caused a great deal of pain and bleeding ~ the pain and bleeding seems to have changed drastically since he did this ~ I am completely gutted …. Please help 🙏🏼
Hi. So sorry for the delay in replying. How are you now? I agree that nurses have not been trained correctly to undress and repack these type of wounds. They should not be pulling out tissue that is healing. That is completely down to lack of training and that will be very painful. I experienced something similar myself, and then I would be in a state of panic everytime somebody came round to complete the changes. I was fortunate enough that my surgeon then showed my wife exactly what needed to happen. So my wife would then watch and make sure it was done correctly. If you are not comfortable then please go back to your surgeon and ask for help.
@@sydneystoma385 , thank you so very much for your kind words ~ very much needed and appreciated! I wish I had someone whom I could trust to watch and understand how important this wound bandage changes are … so very glad you have your wife’s Kern eye to watch for you ~ I’m thinking of putting up a mirror on the wall near my bed ….. seriously. Here in the states “ any nurse “ can perform wound bandage dressings/changes - it’s like a catch - all phrase and I truly am with you with these types of wounds should require a separate training of experience and expertise… I’ve been in hospital twice since my last writing ~ all commencing within days of having one of these changes.
I have fired the one nurse who started the increased pain and bleeding… currently allowing just two nurses to do the changes however still looking for another agency altogether. I have taken your advice and returned to my surgeon and primary care for help … I truly appreciate you sharing your journey and again most certainly appreciate your response. So helpful knowing another person truly understands that of which I speak is not out of the ordinary nor am I a person who attempts going to hospital seeking pain medication- this opioid crisis here in the states has truly created a beast for those of us who truly need temporary medication help ! Meditation and breathing of course do help ~ still tho ~ it’s so disheartening to go to hospital for help and turn ‘round in 36 hours and one is booted out ..
Once again, I’m going to have another listen to your videos as I’m finding myself in need of hearing the truth about the facts of this procedure and I’m the face of what we do go through , there is a happier ending in sight ! ❣️.
Ps ~ please pardon spelling errors - I can not seem to edit my comment 😂- quite sure you will understand ~ also thank you for asking how I am doing now ~ I have a good attitude and am looking forward to the day I do not think of “ pain “ ! Willing to do everything I can do to make the very best life I can !
After my ileostomy reversed over 1 year ago (actually 13 months) I was overwhelmed. I have had no choice to undergo a surgery to remove a cancer on my colorectal over 1 year ago and now I got a new me and a new life as the cancer is not spreading but I still, am under my surgeon surveillance for 5 years. The stoma did not give me any issue. I used to change it once a day over 4 months. I have had my colonscopy recently included the blood test. All seems clear and my next appointment for colonscopy will be in 3 years time instead of every year.. and my blood test every 6 months over 5 years.
I did not want to watch the procedure when they reversed my ileostomy...but not like you!....for that I do admire your courage and strength.
Hi. Fantastic news to hear everything seems clear. I am very happy for you. Thanks for watching and leaving a comment and I wish you all the best moving forward.
Just wanted to say thank you for taking your time to make great informative videos for people in need, its great to see someone just making videos with the purpose of helping others without wanting anything in return 👍
My partner had surgery 5 weeks ago now, her process was very different to yours, she had laparoscopic surgery and her butt wound was already closed when she came out with dissolving stitches.
They also already removed her epidural when she left theatre and put her on a morphine pump instead with a button pressed by user.
I thought this was wrong as she was in agony but apparently the epidural is only to prevent unwanted movement whilst the robot and surgeon are working near vital organs and nerves deep inside.
she had two holes cut through her butt cheeks and tubing about 8 inches deep going into the area of surgery inside and these drained away all the fluid into vacuum pressure bottles for 8 days until it stopped draining and then they pulled the tubing out.
From my observations this looked to me a lot less painful process than you've described with the packing and pump method.
Also just wanted to point out my partner couldn't wee for 3 weeks after surgery and had to go home with a catheter in her bladder which the nurses came and removed and luckily she could wee at 3 weeks, apparently this is normal due to swelling and damage in the pelvic area.
Youve really helped me to learn and help my partner better over the last few weeks and i really appreciate it, thank you.
I just thought id post my partners experience which might help other people who are having laparoscopic surgery and worried about the process.
As you say at the time its extremely painful and a shock to get used to the bag chages etc... but it soon becomes normal, my wifes currently at tesco with my daughter whilst im making the dinner so it soon becomes manageable, dont hope for too much too quickly though, she cant drive as butt is still very sore and she has to walk very slowly with breaks, we borrowed a wheel chair recently to take her xmas shopping so dont expect loads of long walking at 5 weeks as its too painful and will open the wound possibly.
Really appreciate it, thanks again 👍
Thank you so much for the kind words, and thank you for sharing your wife’s experience. I do know they like to get people off epidural quite quickly. On a previous surgery I had the epidural for a few days and i couldn’t stand it. I did prefer the morphine on pump. Morphine is terrible for stopping you peeing, i have been in agony trying to pee but it wouldn’t come out. I once had a bad experience of a catheter so I am reluctant to let them put another one in when i am using morphine.
It is a slow process healing, but there is no rush. It sounds like you support your wife well which is great. So many people have unsupportive partners and that must be awful for them. I wish you all well and have a fantastic family Christmas together.
@@sydneystoma385 thank you, we appreciate it, merry Christmas to you too 😁
Great video mate. I have my barbie butt surgery next Wednesday.
Hi Terry. Thanks for watching. I hope the surgery goes well.
@Sydney Stoma Thank you mate, pretty nervous but I'm sure it'll work out well
@@terrysmith3537 hi fellow warrior 👋🏼 hope you don’t mind me wishing you the best with your surgery and recovery ~ how is it going if you don’t mind me asking ? I just had the barbie butt surgery February 21 2023 and would like very much to have someone to chat with. It’s such a major procedure and comes with lots of experiences the professionals do not tell you about …. Let me know , I hope to hear from you friend.
I’m having my done in 2 weeks finally!
I hope it goes well!!
Great video!!! Thank you.
Thank you for watching.
Sydney your video is so helpful ! Sharing you experience is giving me courage to have the Barbie Butt surgery. Total colon removal was 2 yrs ago. My surgery will probably be mid July,2022. I didn’t think the colon removal was all that painful. I have been sick since about 1970…this surgery coming up scares me though! Your positive video is a great help.
Bless you. Thank you for sharing.
Thanks for watching!
Thanks for your honest information. You make having a stoma so much more acceptable and very informative. Had my surgery 3 months ago and had little or no information about coping with the stoma and products...had no idea how to order bags etc so your videos have been super informative.
Do you do any videos on how you experience and cope with physical changes?
I am still having periodical bouts of being sick...with no notice!
Also have deep stomach pain when I sit or stand ....very brief.
I had a stoma and removal of anus, rectum and sigmoid colon with an exterior flap...huge surgery on my right buttock.
Also due to have a colonoscopy through my stoma in the next few months.
Is it painful?
Also some of my pelvic floor removed. When do you start doing activities etc...I am a very Ctive person and am having a CT scan in a week for a hernia which looks like it's developed under the stoma...
Any advice?
Videos?
Hi Hilary. It certainly sounds like you have been through a tough time. I found the medical world really do not provide enough information about life after surgery and living with a stoma. These are some of the reasons I set this channel up. What do mean by physical changes? If I have not covered it in any of my videos I will do one. In terms of colonoscopy through the stoma I have one tomorrow!! 😁
Hi Hilary. Hernia advice is not something I can do. I have not had one, so my knowledge in this area would not be worth sharing. I know there are hernia stoma belts that can assist.
Thanks for this good information had a stoma for 16 years now the rectums had it so painful need the Barbie butt that packing sounds bad. can’t take the pain of the stump no more might have to do it this year I get on with the bag fine my stumps never been great after the first surgery all them years ago tbh.
Not every surgeon uses the packing method, but its only short term pain for long term gain. It sounds like you have made your mind up, go for it and get some relief from the pain!
Many years ago I had a minor operation and I had experience of District nurses. It was not good. If they did turn up they did not know how to change a dressing.
Just to let you know if you do need a district nurse make sure you have all of your equipment because the district nurses do not carry anything (or the ones I had didn't).
Sorry to read you had a poor experience. It doesn't give you confidence when a district nurse doesn't have everything needed. Fortunately I had a very good district nurse.
Excellent 👍. Thank you
Welcome 👍
By the way thank you for the mattress company.
No probs. Repose is the name of the mattress.
Sounds like a different surgery to mine that was done 6 weeks ago. My bum was done by robotics, but that's very new, I think I was about the 8th for my surgeon. Just amazing technology. No packing. The wound is closed straight away. The drain was in for 5 days (no vacuum machine), and removed before I was released on day 5. 6 weeks in and I'm now pretty active, but the wound is still sore, but I can sit down for dinner, and drive a reasonable distance. My wife called me Mr MonoButt to start with, but now the swelling has reduced I have a normal bum profile. I do get the phantom desire to poo! Getting used to the stoma, a bit leaky, and about to try the convex bag. Thanks for your video on that. Really helpful. You are right, you have to get familiar and confident with the stoma. Great advice. I look at it as a journey. Much more comfortable with it now. Thank you for your videos. They helped me prepare, and now to continue my journey. I do need to be patient, so your 'time' advice is wise. Hope you are well.
Hi David. Wow surgery done by robotics! That's amazing. Technology is incredible. Glad the swelling has come down and you are no longer monobutt 😃. In the early days patience and just taking things slowly is key. Thank you for watching and I am really pleased my videos help people. That's why I do it. I am not here to be a social media star, it's just about helping people for me. That's why I don't put out loads and loads of content. I only ever want to put content out that I think will help. Good luck with your journey and if there is anything I can help with just ask.
Which hospital did you go to?
Gloucester Royal.
hello
i envy you right now my Barbie but was done 4 weeks ago by an excelent traditional surgeon. because i hve cancer prob more removed than for people who have chrones
im in agony my wound doesnt seem to be closing i have a sealed dressing with a pump changed twice a week and its apparently in great condition but still huge.
please some one help
@@leandamobile Sorry to hear this. Despite having the robot surgery my wound has partially reopened. That was in April. Chemo and Radiotherapy have delayed healing. But… it will heal. Stick with what the nurses tell you, eat lots of protein. Mine was rectal cancer so lots of reconstruction. Just have to be patient. My thoughts are with you.
Which hospital did you have it done at please?
Luton and Dunstable University Hospital
I have 5 more chemotherapy treatments then I get an ileostomy. I am in stage 3 cancer plus I have crohns, plus ibs. In all honesty I'm terrified, i just turned 41 march 2nd. I found out I had cancer this past Christmas morning. After surgery how long will I expect to be in hospital.
Hi. Sorry for the delay in replying. You should be out of hospital within the week from surgery. Home is the best place to recover. Hope all goes well for you.
i have cancer but the result is the same my rectum and anus is removed 4 weeks and im struggling with a huge horrible wound. the colostomy is fine but i hve a huge hole which is difficult to dress an seal and i hve a pump.
im so much discomfort and pain please help
Hi. Thanks for watching. Ok so in terms of dressing the wound do you have a nurse that comes and does this for you? I had a nurse that came to my home every few days to change the dressings. The pump should really aid the healing process, is the pump the one that is sealed over the rectum area and pulls out any unnecessary fluids? This really helped me. It is very painful and you should be being supplied with good pain relief medication. After four weeks there should be a noticeable change in the wound. If there is not you must go back to your medical team. I really hope you are not being expected to change the dressing yourself. Tell me more about that. Are you in the UK?
thank you for replying and apologies for my late reply. ive been in and out of hospital with infections and stuff. i wont go on about the other things not fair to take up so much of your time.
I do have a portable pump, its 3m activ.a.c, a heavy thing to deal with with everyday.
My 'hole' gets dressed twice a week, i go to out patients. Yes I'm on pain medication oxycontin ect. the meds make me constipated so of course i take laxatives every day i now have dioreah most days with horrible nausea and colicky feelings and so on
back to the massive wound. yes of course its healed up a bit, but it seems that its going to be many more months until its healed. i don't know why its so slow? Im advised to cut the sugar and carbs and to eat as much protein as possible, so i eat eggs for breakfast and a large amount of meat in the evening.
the issue is that its so sore and uncomfortable.
perhaps its because i have Cancer that healing so slowly.
is there any thing else that you can think of that i should do.
i love your videos, your voice is calming and you are practical as well as having a great sense of humour. Thank you for doing them, you help a lot of people.
best wishes
Leanda
oh yes i live in London.
@@leandamobile How's your wound doing. I had to have the whole barbie butt surgery September of 2021 due to colon cancer. My wound just now started healing up completely. It sure is a slow healer. Drink premier proteins once in the morning and once at night. I was putting this sort of silver dressing to absorb any moisture, however, it was keeping the wound very moist and I noticed significant improvement and healing washing the area in the morning and drying it and then washing it with cold water and night and drying it. Letting the natural air and moisture heal it natural. It's very frustrating waiting for it to heal and it can take a long time but it will get there. Hang in there and if you have any questions feel free to reach out.
Why did you change from fittleworth, just asking as I use them
Hi Roger. I wasn't impressed with their customer service and there reluctance to let me sample other bags without my stoma teams consent. I have charter very good, Respond are outstanding, Respond seem to really care about people and provide so much help. I just didn't get that feeling of care from Fittleworth.
@@sydneystoma385 I was surprised I got through to them so quick yesterday I am usually on the phone about 20 minutes
@@sydneystoma385 Yes I had that problem when I wanted anoth extra adhesive remover and I am still waiting for it
@@sydneystoma385 i do use them and im finfing there customer care great howver their relationship with my gp id difficult and often my order is delayed i gather because the gp hasn't signed off on it
so i dont know.
Do you ever have rectal discharge ? I have had the same surgery as you 5 years ago but still have slight discharge even though I don't have a rectum or an anus. I was told it is normal in some people but it is very inconvenient. I use panty liners which contain it. Just wondering if it will ever stop?
Hi Rosemary. No I don’t have any discharge as there is nothing there for discharge to come out off. My rectum is completely removed and healed up. The easiest way to explain it is say it looks like a barbie doll butt hence it’s often known as. Barbie Butt surgery. The rectum is completely sealed.
Hi i had it done due to racial cancer..and they just stitched me up. This was in Northern Ireland.
Yeah it does vary from hospital to hospital and different surgeons.
I have had a joupuch for 25 years, i have had qn ileostomy b4 now my quality of life is gobe so having the op to remove it and barbie butt in 6 weeks... its the barbie butt op that is daunting now. I dont mind the ileostomy at all and yes its like an alien 😂😂 😂😂
😂😂 you will smash it!