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First post, my story, a few questions

 
This is the best website for people with an Ostomy. So much understanding.

Hi! 
I’ve been a member here for a few months but haven’t had the courage to post until today. 
My name is Beth, I’m 26 from England. 
I’m coming up to my first stomaversary next month on the 12th December and i’m very nervous and feel emotional. 
I have diagnosed mental health conditions prior to my surgery and have since been diagnosed with ptsd again from my hospital stay. 
I’d like to tell my story. 
Going back to last year my symptoms first started on 2nd November 2021, I was on holiday and it just started with diarrhoea. I thought I just had a bug and I’d be fine in a few days. But it wasn’t, after 7 days of diarrhoea and some sickness I contacted my gp. I was sent for blood tests and did a stool sample but was told they were fine. I kept getting worse, I was going to the toilet 10 times a day, having a few accidents and every time I ate I was sick. I got nowhere with my GP surgery. 
It came to the end of the November and I was really struggling now, I couldn’t eat anything other than jelly and I was still being sick, I was so weak and couldn’t do much and had so little energy. My stomach was so bloated and I had awful pains,  It came to a weekend and I felt so much worse so I phoned 111. They were going to send an ambulance but I said I could get a lift to a&e. I got to a&e and explained what was happening and I felt the judgment straight away that I was in a&e for sickness and diarrhoea but it had been going on for nearly 4 weeks. I was triaged by a very judgmental nurse. She asked why I had come to a&e for just what I had and I explained I had been sent by 111. The nurse told me well they always send people here that don’t need to be here. She told me she wouldn’t send me through to a&e and I could see an out of hours doctor but “they would just give me paracetamol and send me home and I’d have to wait 4 hours so I was best going home and phoning my gp”. I went home crying and in absolute agony. 
I was back and forth to my GP but still wasn’t able to get a face to face appointment and was just spoke to over the phone. I was given different anti sickness and diarrhoea medication but nothing made a difference. 
Then came the weekend of the 4th December. I was so so poorly and was going grey in the face but I was so scared to go to a&e again and be sent away. I couldn’t get myself up the stairs and had to have assistance, I knew I was Ill but never thought it was as bad as it was. 
I started bleeding when going to the toilet and again called my GP on 6th December. I was spoke to on the phone again but this time they agreed to see me face to face. I had to get someone to take me and escort me in because I couldn’t walk alone. The GP did my blood pressure and it was low and he decided I needed to go to a&e just for some fluids and he would refer me to a gastroenterologist. 
I never saw that gastroenterologist. I went to a&e, I begged for my mum to stay with me because I felt too unwell to get around by myself but it was refused for covid restrictions. I was triaged and as soon as I walked In the room I threw up everywhere. This nurse said I would be taken straight to a room. I was confined to a room in case I had anything catchy. I couldn’t stop being sick and going to the toilet. 
Now from here I don’t remember much. 
I know I was taken to a ward and I was told I had inflammation and would need steroids and fluids. 
I still couldn’t stop going to the toilet and being sick and it was using all of my energy. It came to the 11th December I was going downhill and I was told I was on the verge of sepsis and I could no longer leave my bed. I was told I had to use a bed pan and had a catheter put in. I’m the middle of the night I was taken down for a ct and abdominal X-ray. I was then woken up at 5am by surgeons around my bed telling me I had a perforated bowel and I needed emergency surgery straight away and would have a temporary stoma. 
I was in absolute bits. 
I was taken down for surgery and it was worse than they thought. My large bowel was perforated in several places, I had gangrene and when they tried to remove my bowel it literally exploded and disintegrated it was so diseased. My stoma would no longer be temporary. I had my whole bowel and most of my rectum removed except my rectal stump. 
I don’t remember coming out of surgery, I was in intensive care for a few days and don’t remember much from there. All I remember is meeting a stoma nurse for the first time and being told I would be out for Christmas. Initially I was told I was doing well. However at some point I went downhill again, I’m not sure on the date because I was so out of it. 
I was in hospital for Christmas but I don’t remember it at all. On Boxing Day which again I don’t remember I just know this from being told after, they found out I had a blood infection and an infection in my original incision and I went back to surgery. 
They couldn’t stitch me back up and instead I had a vac machine applied to drain my stomach and close the wound using negative pressure. My stoma retracted and they couldn’t get it to stay up. 
I was kept asleep after surgery and put on a ventilator and in an induced coma in intensive care again where I spent new year. In January I came off the ventilator and then out of intensive care. 
The only memory I have from intensive care is having hallucinations (intensive care delirium) due to infections and morphine. 
When I was in intensive care they noticed my pupils were different sizes. They queried a stroke and did a head ct, thankfully it wasn’t. But it’s only starting to be investigated now. 
I don’t remember the ward to begin with but around mid January I started to get back to me and can remember things. 
I was getting better but still so poorly. I was going down to theatre between every few days to eventually a week in between. 
My stoma was still retracted, stoma nurses couldn’t find the right bag for me and I was having leaks several times a day and waking up every morning covered in poo. 
I slowly started being introduced to foods after about a month of just being fed through a line in my neck. I was on soup and ice cream for a while then I started proper food and still being fed through my neck. 
They decided to start me doing physio, I had been in bed from the 11th December until now around mid January. It was very slow, to begin with I just started sitting up and moving my limbs. At one stage I wasn’t even able to move my own limbs. 
As I started moving my arms and legs I noticed my right leg and foot didn’t feel right. I kept telling doctors and nurses but they did nothing. 
One Friday evening I started to develop breathing difficulties, I thought it was just a panic attack but when the nurse came over and did my oxygen it had dropped a lot. They pressed the emergency button and I had on call doctors come and tell me I might need to go back to intensive care because they thought I had a blood clot in my lungs. Thankfully I didn’t and it was an air bubble in my lungs which oxygen fixed. 
Then a few days later I was told I had caught covid and was going to be put in isolation with 5 others with covid. This time was awful, the nurses didn’t come in the room as often, I wasn’t allowed to see family at all (I was allowed occasional visits from my mum before this because I had been so unwell) and I wasn’t allowed visits from the stoma nurse. 
I was constantly leaking and the staff didn’t want to keep changing my bag (I still hadn’t had training) so just kept sticking extenders round so I was so sore. 
I wasn’t on my proper mental health medication so I was having constant panic attacks. 
Then the worst things happened. 
I had been next to this poorly older lady before we both got moved to the covid bay because we both had covid. I knew she was poorly but didn’t know how bad until I woke up in the middle of the night to them removing her body. She passed away in the night and I was heartbroken. The following morning another lady was put in her bed space, that evening she also passed. But this time I heard it all as her family cried out and when they were preparing her body one of the nurses didn’t fully close a curtain and I saw her laying there. I can’t get that image out my head. 
About a week later I was moved out of covid isolation into another bay. I was put in the corner of the room next to a closed curtain. I thought nothing of it, it happened frequently I’d they had visitors or a doctor but the curtain didn’t come open. Then came 2 visitors who went inside and I could hear crying. They left and then they came to collect her body. I was so upset again. 3 women passed away in just over a week and I was both upset and terrified. 
Another woman was put in the bed opposite and we began talking and we both had a stoma and a vac machine so we spoke a lot. She went downhill massively and was rushed off in the middle of the night to intensive care and I was so terrified she would pass away. Thankfully someone told me eventually she was okay and I was so relieved. 
I began the proper physio sessions and began standing. It was terrifying and my body was so so weak. 
I remember the first day I was out of bed and got to sit in a chair for my lunch. They told me to sit for a few hours and then nurses and hcas would help me back into bed. 2 hours passed and I asked for help to get into bed. 2 HCA’s came over and said they were going to use a rocking strategy, I was so nervous because this isn’t what the physios used and they were using a rotunda. 
I managed to get myself half up with them supporting me but my legs wouldn’t straighten. My legs completely gave way and I fell to the floor. I was in so much pain and crying. They called more nurses and hcas. I was crowded by them trying to help me up. My legs wouldn’t work. I remember one nurse shouting at me telling me I wasn’t trying. Another said I was because I was sweating so much from the effort. They managed to get me back into the seat and said they had to hoist me back into bed. It was mortifying. I was so scared of getting up and sitting in that chair again and it took me days to try again. It’s been 10 months since that and I still have a fear of falling. I’ve only sat on the floor a few times and fear being alone and getting up in case I have a fall.

Eventually I got good with physio, I began walking up and down the bay with assistance and a Walker and then crutches. I kept the crutches for a further 4 months. But when I started this proper walking the physios noticed there was something wrong with my right foot. I knew there was something all along but no one listened to me. It turns out I had foot drop, so I had numbness from my knee to my toes and my foot didn’t lift properly. I was seen by some doctor and given a splint to wear. 
Eventually after 2 months I was allowed to have my catheter removed and go to the toilet. I finally had the line removed from my neck. I was eating a lot better and I was moving around more. But I still wasn’t going home because of the open wound on my stomach. The vac machine was working but the wound was too big to be dressed at home so I had to stay in. 
I learnt to climb the stairs and I was discharged from physio and one step closer to getting home! 
Then the week of the 21st February they said they were looking at me going home. I just needed to manage my vac dressing change on the ward without any sedation. They said it would be painful. I still went ahead with it. They did this on the Thursday and I passed which meant I could go home. 
Then finally on Friday 25th February the doctors and nurses all worked really hard that day to get everything in place so I could go home. I was an emotional wreck and so nervous but so happy to be going home after 11 weeks and 5 days/82 days. I had 11 surgeries in this time! 
I was picked up at 6pm that night and got to finally go home. 
The journey has been slow but I was so happy to be out of hospital. 
When I was in hospital my hair wasn’t washed once when I couldn’t do it myself and rarely brushed. When I started brushing it, it began to come out in chunks. A few weeks after I came out of hospital I had lost 90% of my hair and shaved it off because I couldn’t deal with the bald patches. It’s growing back now but I’m so self conscious about it
I had visits from district nurses twice a week for the next 2 months and then when i started driving again they said I could get them done at my GP surgery. 
I had my dressing changes done for a further 4 months and finally in August my wound eventually closed. 
However unfortunately I’ve been left with a huge hole in my stomach. It’s about 5cm in length, 3cm in width and 4cm deep. I hate it a lot. I don’t mind the scar at the top but I hate the hole but I’m hoping it will be fixed in surgery eventually. 
I still see my stoma nurse when needed and she’s truly amazing. About a month after I came out of hospital they found the right bags for me that reduced the leaks. I used convex bags with paste, barrier strips and extenders but have to change my bag at least once a day. It was recommended twice a day at one stage. 
My stoma is still retracted and I need future surgery to fix this. 
I also need the barbie butt surgery I’m very nervous about. 
I forgot to say, they sent off what was left of my colon to find out what caused the perforation and it came back as between ulcerative colitis and unknown but they’ve gone with uc. I had no idea I had it and was only unwell for 5 weeks before. 
So here I am nearly 11 months since my surgery and I am feeling a bit all over the place right now. I have quite a few questions. 

I’m feeling highly emotional.

1. Does anyone have ptsd from a particular traumatic hospital stay like mine? How do you cope with it? I already had ptsd from a trauma event years prior. I’ve been told I can do trauma therapy once I finish a programme I was in prior to surgery but that will take over a year. 

2. Has anyone had a retracted stoma that surgery has fixed? 

3. How do you deal with the stomaversary? 

4. For the last few months I’ve had this stabbing pain to the right of my stoma. I’m under 2 surgeons at different hospitals and have contacted the one doing ongoing investigations. He left me a voicemail back in September saying it’s a bulge in the muscle, stoma nurse says that means a hernia. I have no buldge and have not been examined. 
The last few days the pain has been really bad with burning at the same time, I have no sore skin where it is. Yesterday I even thought about going to a&e because the pain was so bad but have a fear of hospitals now. Anyone know what this is or what you can do for it?

5. Anyone been left with nerve damage/foot drop, if so did it improve? 

Any other advice or support would be greatly appreciated. Thank you so much for reading! 

 

Welcome to the site. You’ve been thru a lot. Congratulations on your stomaversary coming up, make sure to celebrate it however you feel fit to do. 

MeetAnOstoMate - 28,358 members
 

I wish you were here for a couple reasons.  I wish I could give you a hug.  What hell you've been through.   The second is hopefully better medical care.   

I supposedly have PTSD.   I am in a small group with others with PTSD.   I say supposedly because my only experience with PTSD is with soldiers and I see my experience as nothing in comparison.  

Before all I went through I liked being home and alone.   I've never had cabin fever even when I lived up in northern south Dakota and got snowed in for a couple weeks.   When I came home I had extreme nightmares and couldn't stand to be alone much.   Night was the worst so a family member stays in my room with me.  I had to have some light in the room.  

I honestly can't tell you why I reacted this way.  I can sleep in the dark again and I rarely have nightmares but that stopped when my family member started sleeping in here.  

I've had some anxiety attacks.  One in the hospital when physical therapy had me stand up and walk one day and I couldn't breathe.   

Some days fear hits.  I try to take life one day at a time to stop a lot of that.   I'm told that's normal at the moment.   

I don't know if any of that is similar for you.  But please feel free to write me any time.   I have strong shoulders, a little bony at the moment but strong.   

I'm glad you shared your experience.   It makes me so mad they turned you away at emergency.  God bless you

 

First I want to send a big virtual hug to you!  Your story is both horrific and terrifying and leaves me shaking my head in the treatment you have received by the medical community and I can relate.  You are an amazing survivor to say the least!!! The fact that you can still tell your story leads me to believe you will work to find the answers you need.  I had a similar “onset” of illness and was misdiagnosed ultimately leading me to become an ostomate.  This site has made me realize there is much to be learned.  I find answers can be found more readily here by other Ostomates sharing similar circumstances resulting in more (immediate) and helpful/useful information than the medical community provides - at least this has been the case for me.  My initial surgery was done out of state while I was on vacation.  Upon returning home I have had to find several different doctors for follow up reasons.  My follow up surgeon (although nice) does not seem to have any interest in any issues I have, his only interest is in doing reversal surgery.  Sounds easy enough but  “au contraries mon ami” my  experiences in hospitals, emergency rooms, an operating rooms would suggest otherwise.  Wishing you the best !  jb 

 

Hi Bethany,  Thank you for sharing your story..   This is a wonderful site, and y ou will  find many helpful people, with personal experiences, and suggestions of ways to cope..  Never be afraid to post questions of  all kinds  even  " sexual" when y ou're ready for that... My name is Marsha, and I'm  74  years old..    I hav e my ileostomy, for almost 60 years.....from the time I was 15...  What you went through in a few months.....I went through over 4 years...   In the month of June , ( when I w as 12)   I got my period for t he first time....   Then got it again, in  July, and then again, in July...and then a few  weeks later...    That made me t ake a mirror and " look" below..   I was bleeding from the wrong place ( t he  rectum)...The pains/ cramps I had might have been from my period, or might have been from the onset of Ulcerative colitis...   By  Oct.   I had a  diagnosis...   The rectal dr. I had been taken to, recommended and ileostomy immediately,   but  my parent s were adamently against it...  Instead, they f ound an upscale, NYC Gastro dr. willing to treat a " child"  ( UC was considered an old age disease, back in the 1960's)    I was p ut on steroids,   still was in school, but had begun vomiting, and had bloody diareah...   By Jan .  I was hospitalized  as an emergency.....adn was there for 6 months...   Ii was on an adult ward,   confined to bed,  slept on a bed pan, developed a stomach ulcer from the medications....and was finally sent home at 70 lbs ( down from 120_   " to die"..  That was  what I thought..  I was home for about 10 weeks,   and then back in the hospital for more tests, experimental treatments   , in travenous feeding etc...   I was taken out of school, on home instruction, and was in and out of t he hospital until I was 15...  By then, I had osteo porosis, was in a back brace, had to go off t he steroids, and was " bleeding to death"..   I went into shock, and they  couldn't finish the first surgery..   Just did the ostomy, but left all the disease bowel in, until I could go t hrough further surger....   That was from Sept, to Dec...   Had my second  surgery, and they removed t he  diseased colon, but left t he diseased  rectal s tump.....just in case...    It took another 6 months for me to get out of t he back b race, and b ack to school.....with my ileostomy...   I had accepted it readily, learned how to manage, with the help of other ostomates  ( no stoma nurses back t hen).    I was glad to be alive, and back to being in school, and even started to date...  It was only then,  that I began to question the path my parents took.   They were willin g to let me suffer, and be experimented on, and treated with debilitating drugs.....isolating me from school and friends/ peers because of their fear of the surgery....     those feeling simmered under the surface, but it affected my relationship with my parents..   In the meantime, I was in a rush, to catch up with friends......met and married another ostomate, and 4 years later had my first child...  Two  years later....my second son w as born...   I'm going to fast forward.....to say, that both children inherited  our " bad genes".  On e  had  UC, the other had what his father had....Crohn s...   Both are grown  & married now,   and have managed their conditions medically,  no surgery needed....    The common  " ostomy" did not keep o ur marriage together.....and my ex and and I div orced after 24  1/2 years.....     I was relatively well......from my thirties to my 60;s  ,   but withh all the damage done to my body in those early years, I started to develop  other medical issues....   Diabetes, liver disease ( had Hep C from transfusions)   kidney disease,   asthma,  arthritis.....feet,  knees, hips, hands neck.... .    For one of my kidney stone operations,  they had difficulty intubating me, and my throat swelled up.....I  needed to be on a b reathing tube/ while awake for  5 days..   That was traumatic, and I had a bout of PTSD....waking up at night, not being able to breathe....   Shortly after.....my neice blessed my " bed" with bedbugs when she took a  nap,    and I had to have my whole room :  Purged"...  Alon g with that came nightmares of being eaten by giant bed bugs...   I had a bought of vertigo  (  crystals in the inner ear  were o ut of place)...    Although t hat w as cured with vestibular   ( motion) therapy,    it left  me  with a fear of  walking, going down steps..   I lost sense of balance, and that still is not  " normal"..   Don't think it will ever  be....   My newest ailment,  is   breathlessness...... either due to lung issues, or back flow in my veins...   I have more than  10 doctors/  all specialists..  One for each body system...   At 74,    I mourne my lost  yoouth,   but am grateful, that I survived, and managed to live and do a ll I  ever wanted to do..   I  had my babies,   completed my college education as an adult,   made wonderful friends, and after t he divorce ,   travelled the world,   and worked as a teacher....     With hard work,    you can overcome the horrors you went through, adn while the PTSD may last awhile.....it will lessen over time...    The most difficult thing for me was body image...  not due to t he ostomy, but to my stretched out ( stretch marks) and  scarred body...    I have a  deep hole as well....at t he base of my incision, just above the pubic bone.....when the drain had b een  for 3 surgeries.... It's shaped  like a  big smile....  :>)

 Those early  years really did impact, the person I became...    I set goals for my self,   I worked hard, determined to make the rest of my life matter......    It was easier years ago, when I had  more faith, and "perceived" time....    I feel  that I don't have that much to look forward to these days.....but every day that I wake up is a gift and a blessing..   I lost a lot of friends due to covid.....and I'm grateful, that so far I've avoided that..   I w a s at high risk...    Freel f ree to write and ask any questions you need answered..   For t hose of you who have  read it before,  I apologize for retelling my story......     I wish everyone the best of luck...... managin g their life, their ostomy, and keeping their motivation to enjoy each day as it comes...     Best  regards,  Marsha....

 

Just adding one more t hing......   By the time I was 1 8, and the  rectal st ump hadn't healed, I pleaded with my parents a nd doctors to r emov e t he damn thing...   the doctors said that eventually, with a " healed stump"  they  could rehook me...   I told them  in no way, wo uld I ever agree to risk that surgery..  I was content  having an ileostomy  .....for life..   So  when I was 19,  the stump was removed, but they also damaged my bladder, and I have lived with " no sensation to have to pee" for all these years..    I pee by the clock...every 3 to four hours, unless I've had a lot of water.....which I need to do for hydration....      I healed well, and never  regreted that decsion....   Marsha

 

Marsha again.....   re""   retracted stoma...  It's not unusual for t he stoma to " pull back" into the body over time...    Mine use to protrude ab out an inch..  These days, it's almost flush with  my belly.. on top...   The belly underneath t he stoma has pulled  back, and formed a depression, which often causes leaks..   I have been using convatec's   2 piece convex system, and also use 1/2 of a seal t o build up the area under t he stoma...    I generally get 5-7 days of wear.....when the o ut put is normal..   But I now also have an IBS conditions (  liquid acidic output/ lots of gas),    which eats through the seal  in a few hours or a day or two..    For now,   diet control ( avoiding some types of foods)  is t he only thing t hat seems to help...   I use to be able to eat just about anything.... Not so anymore..   Life changes..    I'm still learning to accept things I can't change...  best of luck..   Marsha...

 


Immarsh wrote:

Hi Bethany,  Thank you for sharing your story..   This is a wonderful site, and y ou will  find many helpful people, with personal experiences, and suggestions of ways to cope..  Never be afra...

Hello Marsh

I remember previous posts you have written and I am always amazed at your wonderful attitude.  You have been through so much in your life and survived it all - and still have a grateful heart!  I, on the other hand tend to be negative to this day about my situation. I struggle to get beyond decisions, regrets and blame but each day I give it my best shot.  As a parent, I can relate to your parents.  I too would probably have tried to save a child from the ostomy surgery if there were choices - especially back in the days when ostomies must have been “top secrets” and I am guessing something to create fears unimaginable and no internet to research the procedure.  I had a career and was “out in the world” and yet, believe it or not, I never even heard of an ostomy until I was in my mid forties!!!  How is that even possible?  I wish there was a symbol (picture) of a person smacking another upside the head because I would surely deserve to received a few of those from you and other ostomates on this site !  Thanks for your story, because of it I will go forward today with a softer heart ! jb

 

Hi Beth,  I just want to welcome you to the site.  I'm so glad you found us and I know you will find answers and support here.  I am horrified at what you have experienced so far.  That terrible nurse in the A&E should not be working in the healthcare field!  You have come through so much and I admire your courage and strength.  I don't have specific answers for some of your questions, but will say you should celebrate your 'stomaversary', because you made it out of that terrible time and are alive to tell the story.  Believe that things will continue to improve and keep being proactive.  Continue to do what you need to, to get the attention you deserve and don't let the medical professionals push you around.  Don't give up.  As far as the pain you are having right now, I don't know what it might be from, but if it gets really bad before you see your surgeon again, do go to the A&E.  Best of luck, and make sure to keep in touch with us all.  We are all here for you.

Terry

 


AlexT wrote:

Welcome to the site. You’ve been thru a lot. Congratulations on your stomaversary coming up, make sure to celebrate it however you feel fit to do. 

Thank you so much. I definitely will find a way to celebrate just undecided what I want to do right now

 


gairdinspreagtha wrote:

I wish you were here for a couple reasons.  I wish I could give you a hug.  What hell you've been through.   The second is hopefully better medical care.   

I supposedly have PTSD.   I am ...

Thank you so much. 
I’m hoping I get good care from now. The surgeons I’m under now have been good so far. 

I know what you mean about the lights. Some nights I struggle if I haven’t got some noise to fall asleep to. The quiet freaks me out. Sometimes I play a tv programme on my phone so it’s not silent because I hate the silent now. 
I also had a massive fear of being in a room with the doors locked to begin with. That’s not as bad now but I think that came from when they would shut the curtains around my bed and not come back for a while and I felt so trapped behind them. I had panic attacks over that. 

I will be glad when I get to work through it all properly by talking through it. I talk to my mum and she’s great but she doesn’t understand what it was like. 
Thank you 

 


Justbreathe wrote:

First I want to send a big virtual hug to you!  Your story is both horrific and terrifying and leaves me shaking my head in the treatment you have received by the medical community and I can relat...

Thank you so much, that’s really nice to hear. 
There definitely is so much to learn, I want to try and raise more awareness but I wouldn’t know where to start. 
I’m under 2 hospitals regarding my stoma, one is where I had my stoma made and another is about half an hour away with a more specialist doctor. However he seems very keen on pushing a pouch option on me something I’m not keen on from what I’ve read. I have an appointment with him next month where I hope he drops that idea. 

 


Immarsh wrote:

Marsha again.....   re""   retracted stoma...  It's not unusual for t he stoma to " pull back" into the body over time...    Mine use to protrude ab out an inch..  These days, it's almost f...

Hello!

replying to all 3 posts in 1. 

Thank you so much. Wow that’s definitely a story, I’m sorry you had to go through all that. 

I’m glad things have come on since those times. 

I have no experience of the other physical health problems you’ve wrote about other than vertigo. I had vertigo for about 3 weeks the year before my surgery and it was an awful time. 

I’m currently at 4 specialists and my GP surgery, I’m hopng that doesn’t grow.

I have scars from my drains too! One of them is properly dipped in. 

I’m definitely thankful I’m alive and was saved. My goals have been put on hold for now but I will definitely get back to them when I’m ready. 

I’ve been told I could go for a pouch option either a j pouch or IRA but I’m very against it from speaking to people that had regular accidents. The sort of work I did before my surgery I wouldn’t be able to run off to the toilet when I needed. 

How did you find the surgery to remove the stump? 

I’ve been told I’ll need it but they want to hold off for me to decide if I want children if I can. I have no idea if I want children. I’ve been told my fertility has likely been affected my 11 surgeries and a lot of scar tissue. 

My stoma has been retracted within the first few weeks and has never come back out. I can only just see my stoma it’s sucked into the skin. It causes a lot of problems with permanent sore skin and leaks but I’m hoping my next surgery fixes that. It will be nice not to change my bag at least once a day. 

It’s been 3 times in the last 24 hours. So it would be nice to keep it on for a few days. 

I should find out the plan next month.

Thank you so much. 

 


delgrl525 wrote:

Hi Beth,  I just want to welcome you to the site.  I'm so glad you found us and I know you will find answers and support here.  I am horrified at what you have experienced so far.  That terribl...

Hello!

Thank you so much.

The nurse really shouldn’t. I’m hoping when I feel able to review what happened with them they take action and it never happens again. 
Thank you I really need an idea for my stomaversary just not sure what to do! 
I’ve spoke to my stoma nurse about the pain again and she said it’s definitely internal because she looked for any signs on the outside and there was nothing. She’s recommended visiting a&e if it gets really bad again before my next appointment. I think I will have to if it gets as bad as it did a few days ago. I just worry they won’t take me seriously again. 
thank you! 

 

Hi Beth:

First of all, thank u so much for sharing your story, as you have found, you have a lot of support here! Looking back, my story is radically different from what you experienced. I was diagnosed with crohn's disease in 1995, after several years of discovering that I had allergic reactions to have drug on the market for crohn's disease, the only med that worked to control my flares was prednisone--so yes, I was on prednisone from 1995 until 2017 when I had my ileostomy. I had a major surgery in 2000 when they removed 50% of my colon and also gave me a partial hysterectomy (as my colon had attached to my uterus). Several surgeries for fistulas--even had a recto-vaginal fistula (which was downright awful). Luckily for me, I had a great gastro doc and a truly gifted surgeon (the same surgeon did all of my surgeries). Then in Septmeber of 2017, my surgeon told me, we've really got to get that colon out of you and give u an ostomy. I didn't get a "barbie butt" but he did a fabulous job as I also had a hernia that needed to be repaired at the time. The surgeon ended up meshing the hernia and then he pulled my stoma through the mesh--to avoid the chance of future hernias. Hernia's, as I'm sure you've been told, are very common with us ostomates. After my surgery, I went back to see my gastro doc, and he told me how wonderful I looked and he also shared with me, that if I didn't have the surgery, I would have probably been dead by Christmas! Talk about a wake up call! Here I am 5 years out, and Louise (the name of my stoma) and I still have a Love/Hate relationship--lol. But I'm still alive and life is good. Please feel free to message me if you have any questions or are in need of support. I truly care.

 


Bethstanley wrote:

Hello!

Thank you so much.

The nurse really shouldn’t. I’m hoping when I feel able to review what happened with them they take action and it never happens again. 
Thank you I really need an id...

Hi Beth,  I'm glad you are planning to address your terrible treatment and lack of care with the hospital, when you are feeling up to it.  There should be consequences for that nurse who treated you so poorly.  The fact that you were not even able to see a doctor is inexcusable.  You should have been given an Xray right away, and a lot of the Hell you endured could have been avoided.  I came by my ostomy the same way as you did.  I had unbelievable abdominal pain and was taken to the ER, where they did an Xray immediately and discovered I had a perforated bowel, but it was discovered quickly and was still small.  I had my surgery within a few hours and there was no opportunity for infection to set in, unlike the horror you went through.  I mean, you almost died!  I really hope there is a way for you to lodge a complaint and have an investigation into how you were treated.  It would probably give you some satisfaction too, going forward, to know that someone was held accountable and that the same thing doesn't happen again.

Terry

 


gairdinspreagtha wrote:

I wish you were here for a couple reasons.  I wish I could give you a hug.  What hell you've been through.   The second is hopefully better medical care.   

I supposedly have PTSD.   I am ...

I’ve had my stoma redone because of it shrinkage. It was done approximately 5 years after original surgery.

it was such a blessing! No more leakages! I still wear a convex barrier, paste and barrier ring though…just in case, LoL!  I was in hospital about 3 days with no problems. It was a God sent to finally have a stoma sticking it’s head out of my belly. I named it, Lucy!

 


gairdinspreagtha wrote:

I wish you were here for a couple reasons.  I wish I could give you a hug.  What hell you've been through.   The second is hopefully better medical care.   

I supposedly have PTSD.   I am ...

I agree totally! I want to hug and cry for her. I definitely feel PTSD from this as well. I'm going to be saying prayers for her. 

 

I'm so sorry you went through so much...for someone with ptsd, hospital stays can definitely add more trauma.  I received my ileostomy in October, it was a scheduled surgery so I knew what to expect and was looking forward to feeling better after decades of motility issues. Over those decades, no one did the imaging procedures to find out why stool wasn't moving normally until this last year. But I had a weird complication that doubled my time in the hospital and caused me to have many other procedures to figure out the problem. I have complex ptsd, so the hospitalization triggered it. The complication? A few weeks before surgery, my neurologist injected botox into tight muscles in the back of my neck so I could lie more comfortably. As my surgery date neared, I started having trouble swallowing. The botox had drifted into the muscles that controlled my swallow on the right side. But until it was confirmed as the cause, I couldn't go home. Even after going home, I had home health care to hydrate and monitor me. But the good thing is we got through it!!! We're still here, trying to be ok! I'm new to this site, so hope I'm posting and replying as I should. Good luck to you and I hope you're a little better every day.

 


NancyCat wrote:

Hi Beth:

First of all, thank u so much for sharing your story, as you have found, you have a lot of support here! Looking back, my story is radically different from what you experienced. I was dia...

Hello, 

Sorry for the slow reply. 
I haven’t figured out this website yet! 
I’m glad you got your stoma in time. It’s a huge wake up call isn’t it. When I found out I wouldn’t have survived more than a few hours it was a huge shock. 
Things are still difficult for me. I’ve come out with a lot more issues than I had previously and even though it’s nearly been a year since the surgery I’m still adapting to my new life.

Stanley is my stomas name and he’ll be 1 year on the 12th! 

 


delgrl525 wrote:

Hi Beth,  I'm glad you are planning to address your terrible treatment and lack of care with the hospital, when you are feeling up to it.  There should be consequences for that nurse who treated ...

Hello, 

sorry for the slow reply. Haven’t figured this website out yet! 
I am definitely going to be following up with what happened now. It’s very hard some days to come to terms with what happened because things would have been so different if they had just sent me for a scan and through to a&e. 
Thank you so much 

 


vanestag wrote:

I’ve had my stoma redone because of it shrinkage. It was done approximately 5 years after original surgery.

it was such a blessing! No more leakages! I still wear a convex barrier, paste and bar...

Sorry for the late reply. Haven’t figured this website out. 
I’m so glad you got your stoma sorted. Can I ask how long the surgery took? And how long your recovery was afterwards. 
I’m assuming mine will be a bit longer because they are going to open my huge incision again and stitch me up properly. 

 


Renfromtexas wrote:

I agree totally! I want to hug and cry for her. I definitely feel PTSD from this as well. I'm going to be saying prayers for her. 

Thank you so much 

 


Daria Luna wrote:

I'm so sorry you went through so much...for someone with ptsd, hospital stays can definitely add more trauma.  I received my ileostomy in October, it was a scheduled surgery so I knew what to expe...

Oh no I’m sorry you went through that! 
Thank you so much, I hope you’re doing better 

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