Stoma surgery? IBD? Low Self Esteem? You’re not alone.

Hi! My names Hattie Gladwell and this blog represents my life with a stoma, and how I learned to live with an Ileostomy Bag. I underwent Ileostomy Surgery following a diagnosis of Ulcerative Colitis in February 2015, and since have spent my time helping myself and hopefully others regain confidence after Ostomy Surgery, whilst writing for SecuriCare Medical.

I have always felt that confidence is a great thing to have; and I understand that a stoma bag can be hard to deal with. I’m still dealing with it, but my aim is to gain my confidence back whilst doing so!

Here I will be posting my experiences and anything I can to help raise awareness for diseases like Ulcerative Colitis. Feel free to submit your own thoughts, stories and photos!

Here’s my story…

On Monday 26th January, when I was 19 years old, I was admitted to hospital with suspected appendicitis. My appendix was taken out in an emergency operation the following day, but it turned out my appendix wasn’t the problem. I had been gravely ill the previous week and this operation had not solved anything, it had merely given me more pain. With severe abdominal cramps and diarrhea still, I was given two colonoscopy’s. The doctors were unable to get into my colon because of the amount of waste sitting in there. They left me for 5 more days on high pain killers, I was pretty out of it on morphine most of the time but it did not stop the screams of pain and constant rushes to the toilet. It turns out the registrar had misplaced some information from my examinations and not informed the doctor of the seriousness of my case, as once aware, the doctor warned my parents of another operation, judging on how I was coping the next day.

Saturday came and nothing had changed except the extortionate amount they had upped my pain relief. I remember my mum telling them “you wouldn’t keep an animal like this, you’d put it down!”. My best friend was visiting as well as my parents when something didn’t feel right. Something alarmed me and I felt a burst in my stomach. “Did you hear that? Something popped! Did you hear? Mum! Something popped inside me! Help!”. My mum screamed for a doctor but the nurse just wanted to up my pain relief again. My mum wasn’t having any of it! “You get me a doctor NOW or I get one myself”. My friend ran out to the front desk for a doctor, and then called my boyfriend.

All I remember from that moment on is a rush of people. A blur. A doctor shoving a piece of paper in my face for me to sign for an operation and my mum squeezing my hand. I didn’t understand what was going on and I was terrified. My boyfriend came and held my other hand, and all I could see in his eyes was fear. My mum explained to me that I was going to be going into theater. Confused, I cried in fear. It was at that point that I was told if I did not have this operation, I would die. It was then I saw the tears in my boyfriends eyes. The heartbreak. And it’s funny, because at that point, I stopped thinking about myself. The only thing I focused on was making sure I told everyone I loved them. Everybody in that room with me needed to know I loved them.The last thing I’m aware of is waking up in pain. Absolute agony. I couldn’t breathe, I couldn’t move, nothing. I felt like a robot. I felt like the life had been sucked out of me. My mum tells me I cried out “Help… Me… Mum” all night long. I don’t know.

The few days were silence. I didn’t want to talk to anyone about what had happened. I didn’t want to know. I just wanted to forget. Then the nurse came round to check on me. A different nurse. And that’s when I had to look. I peered down at my stomach in fear, and saw my worst nightmare. An ileostomy bag, followed by a large scar down my stomach. I pulled my head up as quickly as I could and sobbed, and sobbed.. and sobbed. I couldn’t deal with it. I felt disgusting. I didn’t understand. Why me?

For those of you that don’t know what an ileostomy bag is.. it’s a bag for your stool. During my surgery, I had had my colon (large intestine/large bowel) removed from my body. I had been diagnosed with ulcerative colitis. It had gotten so bad that if they had left it a little longer, it probably would’ve ruptured.. and I wouldn’t be here. I am now left with just my smaller bowel, which is sewn through to the outside of my stomach, the end is called a stoma. As you can imagine, it broke my heart. It scared me. It made me feel abnormal. I can no longer go to the toilet like a normal person, I can’t eat like a normal person, what’s my boyfriend going to think of me? How will I ever look at my body with confidence again?

Over a week since the operation, they’ve finally let me out and I am starting my two month recovery period. I’m in a lot of pain and I still cannot bring myself to look at the stoma beneath the bag. The disease has caused me to lose over a stone in weight and I am struggling to put it back on as I no longer have a proper digestive system I’ve moved back home and my mum is currently my carer. She’s helping me come to terms with it all. I’ve joined some websites to talk to others in the same situation and I’m going to deal with it, I have to. I have to be grateful, this saved my life. I need to be strong and help myself. This is not going to change me. This is not going to defeat me, and hopefully, I will be able to look at myself and feel happiness again. I’ll be able to appreciate myself as much as I should’ve beforehand. I’ll be me.

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162 thoughts on “Stoma surgery? IBD? Low Self Esteem? You’re not alone.

  1. Alexis says:

    Wow, I relate to your story so much. My name is Alexis, and I was diagnosed with ulcerative colitis in October of 2014 at the age of 20 years old. After battling it for a year, I decided to have my colon removed, and had my ileostomy surgery on October 26, 2015. I experienced so much of what you have described here, and I so much appreciate you sharing it. It’s a hell of an experience to go through, especially in your early 20s. I’m here if you want to talk to someone you can relate to:)

    Like

    • Norman Strecker says:

      Wow can I relate to this !!! – in May I suddenly developed a twisted volvulous – after 7 days with no bowel movement they rushed me to emergency where they removed a large portion of my lower large intestine and performed a colestomy on me – the surgeon saved my life because my large intestine was very close to bursting – I have been dealing with a colestomy pouch for 6 months now and I would like to share a few tips – draining the bag is so much cleaner and sanitary if you hold the mouth of the bag upright and pour a small amount of tap water into it – allow the water to saturate the stool first before draining the stool into the toilet bowl – I repeat this irrigation of the bag as many times as necessary until the water draining out is clear – I use the type of pouch that has a front plastic liner that is transparent that way I can tell when all of the stool has been flushed from the bag – when I am away from home I always carry an ordinary plastic medium sized drinking water bottle (the one you buy at the grocery store) – nobody even knows that this is not a drinking water bottle but a handy portable tap water bottle that I can use in emergency situations should my pouch fill up say in the middle of a restaurant while I am having dinner with my friends – this portable water bottle has saved my neck on numerous occasions while away from home – if you constantly keep the inside of the pouch as clean as possible then wearing a pouch is not nearly as bad – hope you find this advise helpful ?

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      • Janet maull says:

        I also put peppermint oil in my last water, just a few drops. I am 75 and still do not like mine. I have had it for 7 months. I get a colonosphy on Jan. 23 Hope it can be reversed. Mine has prolapsed and is so big. If not reversed at least made smaller. I am not young but have always keep myself updated. But I fell so sorry for young people, I pray everyone can adjust and live a full life. I pray a lot for strenth to go on.

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    • Gemma says:

      How I got my ileostomy Is different but coming to terms with it to. I’m 23 but still getting used to it having had it 2 years but I’m now caring for it myself. My diet is back to normal you just learn what to be wary of as activity levels act up. But I’m really happy not and confident of it now. After 13 months of leaks I’m feeling great about it all. So good luck!

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  2. Annette Flower says:

    How wonderful to read your experience – I lost my mum as she was too scared to have a colostomy bag – and my sister too – I will not be following them after reading this if I need one !! My daughter is s beautician and has advised me she has sprayed many ladies with fake tan who have bags ! Not a worry for then or her !!! Well done honey and thank you x

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  3. Beverley says:

    hi, I am on my second ileostomy now, I had UC. I had a reversal two years after my first ileostomy but for two years I struggled with bleeding from the rectum, fistulas, constant pain permanent antibiotics and abcess. then one day an abcess broke through the top of my leg, near the vagina and my Consultant said enough is enough. I went straight in and had my second ileostomy which I have had now for four years now. I sympathise due to your age, I am now 57 and been married for 29 years so it is not so important for me but I feel for young people. There is a website called “Vanilla Blush” that does some nice sexy high waist underwear, have a look. The lady that runs it has an ileostomy and all the underwear contains a lining for the pouch so you don’t sweat. Good LUCK

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  4. Ann says:

    It will be a week tomorrow that I had my bowel removed and am really struggling. I haven’t been able to even look at my Stoma. I’m unable to empty my bag, nearly every time the nursing staff are assisting me I cry, I cry like its the first time every time.
    I had my first attack 16.10.09 and was told by my GP that it was a tummy bug. Between October 09 and February 11 after several visits to my GP and finally a referral to hospital to have an endoscopy that was inconclusive I asked for an other endoscopy and again it came back inconclusive. A friend then suggested That I may have coeliac disease is and the consultant agreed for me to go on wheat free diet to see if that made any difference. Initially did but then my symptoms came back. I was then told that some people just have moved bloody bowel movements and I may be one of those people .
    My symptoms got progressively worse between 2011 and October 2015 when I admitted myself to hospital because I couldn’t take any more than that’s when I was told could have ulcerative colitis/Crohn’s disease.
    They started me on treatment including steroids in November 2015 my body became steroid dependent so the decision was taken in early February 2016 to have my bowel removed.

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    • Beverley says:

      Hi Ann, I know exactly how you feel. I had my large bowel removed some 11 years ago now due to UC but I still vividly remember the feelings you are describing, For the first few weeks I felt faint every time I had to change my bag and did in fact faint on a few occasions, I cried all the time at the unfairness of it all. I used to put off changing my bag for a few days at a time because I couldn’t face it, but that made the skin sore. My advice to you is to get used to it ASAP, change it every morning after you have brushed your teeth making sure the skin is clean and dry, so the bag doesn’t leak, make it a part of your daily routine . The more you do it the quicker you will get used to it, 3 months from now you won’t even think about it, I promise.

      I hope this helps. Personally I did not feel there was enough/any counselling about how one would feel at seeing one’s body looking so different, they just expected you to get on with it. You will feel OK about it trust me.

      Check out an underwear site called Vanilla Blush, they do really pretty Ostomy underwear, or Sloggi do a sensu fresh short which is really good coverage.

      Good Luck

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  5. Cindy Lentz says:

    I am struggling emotionally with a surgery that has left me with a colostomy bag. I am a widow of 32 years. My husband died 2011. I was finally ready to date in 2015. Now who is ever going to want someone like me, big scar and bag. I am 57.
    I am in need of a support group or something to talk with others like me.

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    • securicaremorethanyourbag says:

      Hi Cindy, we are really sorry to hear that you are having such a tough time emotionally. There are lots of online ostomy support communities…and in some a number of the members have even started dating! A few which spring to mind are The Colostomy Association https://www.facebook.com/login/?next=https%3A%2F%2Fwww.facebook.com%2Fgroups%2Fcolostomyassociation2011%2F and #GetYourBellyOut – https://www.facebook.com/getyourbellyout/ . Hope this helps!

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    • Annette says:

      Hi Cindy. I just read your reply and now six months on I do so hope you have found things easier / I list both my mum and only sister to bowel cancer as they refused to have a bag !! If only they had they may still have been here today / I was widowed at age 39 / I was alone for 6 years bringing up my children – however I did find love again and have now been married for 20 years next june / I do hope u decide to date again as it’s you as a person not your physical self that interests people – wishing u well x Annette

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    • Ruthie says:

      Hi. My name is Ruthiemcnulty2. I’m53 years old and 5 weeks into having an ilistomy. I understand that this surgery was neccesary but I am having trouble dealing with it all. I empty my bag but I am unable to deal with changing it yet. My sister is an RN whom I live with. She is not pushing me to do this alone yet, she says caring for the bag each day will get me more comfortable with it.
      I still have some pain and I am terrified of injury of any kind to my stomach or the stomach muscles..I’m just petrified of going back to the hospital..every time a doctor touches me..he hurts me. I have started physical therapy with home health and still I question everything we do. “Work through the pain” it’s easy for them to say that but I’m scared of damaging my insides and going back to hospital or surgery.I’m wondering..does the pain ever go away completely? Even when my bag is empty..I feel it like a weight pulling on me.this is the first time I have reached out to discuss this. I’m sorry if I unburdened myself. What I meant to say was ” hello because we are so close in age”😊

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  6. Jo Burgess says:

    Hi, I had an end colostomy surgery done just over 3 weeks ago due to radiation damage caused from cancer treatment. Basically due to the radiation an ulcer started in my bowel and worked its way through to my vaginal wall, causing a rectal/vaginal fistula. I was pooping through my vagina and the pain caused by inflammation in the bowel was horrendous. While i am fine with the bag being there, and have no problems changing and cleaning it, I am experiencing a lot of pain still and have an awful bearing down feeling all the time. I feel like i want to poop from my bottom but obviously can’t and the pressure in my bottom is terrible. Has anyone else experienced this? and how do you deal with it. I’m at my wits end with pain and fear i will be told that “I;m just going to have to get use to it” I have been fighting cancer for 6 years now and i just can’t go on much longer dealing with this pain. Can anyone help, offer advice or guidance . Thank you Jo

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  7. Willow says:

    Hi all,
    I empathize with all of you. I had my surgery one week ago today. I had very bad diverticulitis or perhaps UC or Chron’s disease. Still waiting for pathology. About a year ago I thought I had a really bad stomach virus. Very high temperature, vomiting, horrible lower left abdominal pain and general weakness. I refused to go to the Dr. Or hospital. I can be very stubborn and rarely get sick with anything aside from migraines and cluster headaches. Months later I was still in significant pain so I broke down and went to Dr. In the meantime I had done some reading and I come from a medical family. I had diagnosed myself with diverticulitis. Upon telling my Dr. I thought I had diverticulitis he said ” no you don’t have that ” I asked why, he replied ” you would be in a lot of pain ‘ I replied but I am in a lot of pain . The Dr. Said I wasn’t in enough pain and told me I had IBS. I was given some meds for IBS and sent on my way. I didn’t get better … Only worse. This was this past December. It took me several more Dr.s and many more tests to find out I did not only have diverticulitis but possibly Chron’s. One week out of surgery I have a catheter bag for my urine and an iliostomy bag for my stool. I’m way to young to have such advanced diverticulitis so the Dr.s are looking into what could be causing this. I cried when I looked down at my belly after surgery and saw the ostomy nag attached. To complicate matters I am allergic to adhesives so when I change my bag a few layers of skin come off with the adhesive. I too had the urge to poop … And I have almost every morning had some liquid come from my rectum. The visiting nurse assured me that was not unusual. Does anyone else have adhesive allergies? If so how are you managing ?

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    • Beverley says:

      I do not have adhesive allergies but, you can get a spray that stops the skin from pulling when you remove the bag. I only know the English version. But basically when you spray around the bag it just slips away.

      Ask your stoma nurse if she knows of anything similar.

      Bev x

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  8. Beverley says:

    Hi Jo

    I had vaginal/rectal fistulas. I also had a rectal fistula that ended up coming through the skin at the top of my thigh so I empathise with you.

    The rectum still produces mucus and sometimes blood and you do get the sensation to poop, it is possible to go to the toilet, bear down as if pooping and you will empty out, mucus but I am sure you know this.

    What it sounds like to me you are experiencing is ‘pouchitis’.

    This is where the pouch becomes inflamed and or infected, you don’t have to ‘live with it’.

    I have had this many times before and my Consultant puts me on Metronidazole for two weeks. It is not the nicest of antibiotics, you cannot drink alcohol, dairy gives a nasty coating on the tongue so best avoid, but it does work.

    For two years I was on a cycle of antibiotics, I would alternate between 5 antibiotics on a monthly basis, thereby only having each one every 5 months.

    It does work I have now not had any antibiotics for 18 months and all is good.

    I hope this helps and I hope you get some relief soon.

    Beverley x

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    • Charlotte Martin says:

      I have peeling skin as well around my stoma underneath the adhesive. When chandigarh the ring, I clean the area with warm water and soap, pat dry, then apply a light dusting of an ostomy protective powder by ReliaMed of Ft. Worth, Texas. I let the powder sit for a few minutes then brush the excess off. It creates a thin gel which fills in the crevices caused by my peeling skin. I get it from my ostomy product supplier.

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  9. Hayley says:

    Hi

    After being ill for around 4 days (constantly at the loo, couldnt eat or drink, fever, stomache cramps) I came to hospital with what I thought was a flare up of proctitis. I thought they’d give me some medication and I’d be on my way home the same day. Then they told me i have ulcerative colitis. they have tried infliximab and giving it this wkend to see if it works but they have scheduled me in for an ileostomy surgery on Monday.

    I really don’t know how to prepare or get my head around it. I’ve read many stories online and the stoma nurses came to see me and suggest i reach out.

    Any support or advice would be so helpful.

    Hayley

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    • Ruthie says:

      Bless your heart..I was going to leave some thoughts\ advice but I see your post is from May. I hope all went well and uou are healthy and well both physically and mentally😊

      Like

  10. joseph henry says:

    I get very emotional whenever i hear stories about colostomy and how it change their lives. My sister was diagnosed with Liver Cancer stage 4, her colon was highly infected by the cancer cells and caused a total obstruction on her colonic wall, they performed a traverse ex-laparoscopy on her ending up having a stoma with a a plastic hose inserted in it. And as days to months gone by, her condition gone worse since it was alreadly on stage 4 when she waa operated, Im taking good care of her, attending her needs, giving her medicines and even changing her colostomy bag and cleaning her up, it is easy at first especially i have to bear the smell but i get used to it, im just thinking that im doing it for her, to make her feel safe until her last breath.

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  11. Claire says:

    Hi hattie, im just wondering what site is better to set up a blog? And if a free one is worth it or not.id like to do one from a mum and familys point of view of children with health problems and stomas, but im not sure where to start. Xx

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  12. Felicia says:

    Hi.. My name is Felicia. I’m 27 with two kids.. I was diagnosed in 2008 with crohns was weighing 230 lbs. I had a part of my large intestine removed in 2013, went on with my life.. Started experiencing more problems, even ended up with fistulas which isn’t good. It spreaded all through my rectum. May, 8, 2016 I had a major surgery. They removed my whole colon n scrapped out my rectum and closed it. I now have a permanent colostomy bag and it drives me crazy.. I have no confidence at all within myself. Keep having to change my bag everyday n is now laying here with no bag on at all because I ran out.. My kids are worried but at the same time run away BC of the smell I ask myself daily why me.. I never looked at life like this.. But I see this is how God wants me to be.. I need some comfort and understanding

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    • Beverley says:

      Hi Felicia

      I am so sorry that you feel so bad. I don’t have a colostomy, I have an ileostomy but with no chance of a reversal having tried some years ago and being so poorly as a result it is a lifelong thing none the less.

      I actually saw this ileostomy, (my third) as a lifesaver. I was happy to have it and be out of the pain the fistulas and abcess’s brought and the general feeling of being so ill and incapacitated. I was happy once I got past the 2 months healing stage to get on with my life again.

      It is essential, I believe to change your bag daily, to keep the skin fresh and to stop it getting sore around your stoma. There should be no reason at all for any smell, unless colostomy bags are different, or unless you experience some leakage, sometimes if you don’t clean out the entrance to the bag it can leak a little but get some tissue down there after emptying and give it a good clean round and there should be no smell. I have discovered through trial and error that I never let myself go below 20 bags. You never know what is going on at the doctors so always get your order in early.

      As time goes on and you become more used to living with the stoma, bag changing etc, it will become second nature to you. My kids although older than yours sometimes forget I even wear a bag and I know most of our friends (not the close ones of course) have any idea.

      It does take some time to get your head around it and it is a big life changer, however, I think you need to be kinder to yourself, and allow your self more time to heal, not just from your surgery but from the trauma of the colostomy and all that it brings with it.

      I really hope you feel a little more positive soon, don;t be depressed about it, the other option is not very attractive !!

      Beverley

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      • Felicia Reynolds says:

        I thank you. I’m actually coming along much better now.. I’m eating everything I get the craving for . I haven’t even been crying lately.. Only problem I have now is I been expericing a Lil soreness over my whole body . my nurse discharged me at first I didn’t feel comfortable knowing that I was about to be on my own but since I have found the right bags I haven’t been having any leaks and my bags even last the whole 3 days

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      • Beverley says:

        Hi Felicia,

        I have been wondering how you were getting along so it was good to hear from you. I don’t know how you manage to get a bag go for three days, mine only last 30 hours max.

        Just be careful of the skin around your stoma. As the output is so acidic you might have something going on and if you are only changing your bag every three days you could cause a lot of damage to the skin.

        When I had my first ileostomy I left my bags for 3 days partly because I couldn’t bear to change them and developed an horrendous ulcer, around 6 centimetres long and 3 centimetres wide, the bag wouldn’t stick to the ulcer and I ended up having another 6 hour op to put my stoma on the other side it was so bad.

        So please be careful and try and change it more regularly, just to be safe.

        Beverley

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  13. Steph says:

    Hi, I don’t have a colostomy or anything like that but my heart goes out to all of you who do. I’m here on behalf of my boyfriend.
    He has always lead a really active lifestyle, martial arts, running etc and has always been super self sufficent. A month ago he started to have pain and was told the usual, stomach bug etc. But when he couldn’t even leave the house for 2 weeks I snapped and called the NHS helpline. Unfortunately he didn’t listen to me then and only went into hospital after the bleeding started.
    He has since had a part of his colon removed and may only have a temporary colostomy. But what I want to know is how to support him? I’ve never seen him cry but he broke down and said he no longer feels human, he is so weak he can’t climb the stairs without help… are there any good blogs or tips or websites anything for young men with colostomys? He’s only 25. I think he needs some help seeing the humour and reading about like minded people.
    I wish you all the best of luck, and as I’ve said to him many times, a bag will never be all you are, and the people who love you will never think twice about it -and they are the only people who matter.
    Steph X

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    • Janet maull says:

      My heart goes out to your boyfriend, I have had mine 2 months now and we finally got it to stop leaking by using barrier strips where it was leaking. I pray a lot for God to give me strenth. I pray that it can be reversed for him and I. I also have a urostomy had that for 4 years it is nothing compared to the poop bag. I tell my mom No one should have to go threw this. It is getting better I will go out to stores and dinner now. Just pray for strenth. I really think his will be reversed. Just show him love as I know you do. Janet

      Like

    • Beverley says:

      Hi Steph

      I remember not being able to climb the stairs, but after about 8 weeks you normally feel a lot better. I always feel colostomy/ileostomy surgeries are far worse for young men, and I feel for you. You can only be supportive, make him feel that his ileostomy does not stop you finding him attractive etc.

      Check out a website called Vanilla Blush that does really nice underwear and swimwear for men and women with ileostomies. All the models on the site have them and there are some pretty big beefy guys there that might make your boyfriend feel that nothing is impossible. It is just getting your head around it that is the biggest hurdle.

      Good luck, keep in touch

      Beverley

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  14. JC says:

    Hello. I am a pouchie and I’ve had it for 25 years. I had an iliostomy constructed in 1991 when I was 12 because o severe ulcerative colitis. Things get better folks… I would recommend counselling, appointments with stoma care nurses and dieticians in the first year of having an iliostomy or pouch construction as its a major transition. I have been taking a multivitamin and B vitamin compound prescribed by NHS along with a probiotic to help my gut health for most of my twenties and thirties. Egg white on sore skin is the best in my experience, its cheap too! It was the only thing that cooled my skin around the iliostomy and was fab when cooled in the fridge. Calendula cream or calendula ointment is also fab but I’ve never tried it with an iliostomy bag. My best advice is: Love who you are and who you will become, tomorrow is another day where you may achieve what you believe (or hope for). I hope this helps someone. Xxx

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  15. Janet maull says:

    I am 75 and have a stoma also, I also have a bag for urine, I got the urine bag 4 years ago, believe me it is nothing. I have had a hard time getting use the stoma I have had it for 2 months we finally got it not to leak. Mine is up high so my poop is liquid. I empty it as soon as it has any poop in it. My husband changes it every other day, he really figured out so it will not leak. We use lots of barrier strips all around the pouch. Skin is in good shape, when it leaks it can really make your skin sore fast. I also pray a lot after it is changed we pray that it will not leak. With out the Lord in my life I would have never made it. My prayers for all that have a stoma.

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  16. Julius says:

    I was diagnosed with diverticulitis and had 3 feet of my large intestine removed. Pain after the surgery was unbearable. My large intestine had 3 perforations and I developed peritonitis.
    Now I’m wearing a colostomy bag and also on a special diet (no red meat, no lactose products, no fast foods, no green vegetables, no spices and no fried meals).
    Surgery was performed on August 7, 2016 and I lost 26 pounds the week I spent at the hospital. I’m on my recovery period but I still have to go every other day to the clinic because there is a blood-like-liquid coming out of the surgery scar. I feel they squeeze the life out of me, because the nurse has to press very hard to get all of the liquid out.
    This just puts me down knowing that I have to go to the clinic and have a 15 minute pain session of squeezing and more squeezing.

    I have a 19 month old daughter that I can’t play much with her because I can barely stay on my feet for 30 minutes max. Same thing if I’m sitting down, no more than 30 min. Unfortunately I can’t help much with the household chores and my wife doesn’t seem to understand that.
    It’s not that I don’t want to, it’s just that I can’t lift heavy stuff, I can take out a small bag of trash but I can’t lift a big bag of trash and take it out. I can’t bend over to pick something from the floor or bend my knees because it hurts!
    Basically a lot of things with which I helped around the house I’m having a lot of difficulty doing because I barely have 17 days since my surgery, but my wife doesn’t seem to understand that, the Doctor explained my condition to her.
    I feel SO ALONE, she gets mad at me because I can’t help around much, I can’t play with my daughter like I used to, I still can’t use my car to drive, I’m having trouble sleeping because of my back pain.

    Anyone has this kind of issues? Any advice, recommendations? Please help.

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  17. Lene says:

    Hi Hattie, I hope all has been well since your ileostomy reversal.
    I’m 21, live in Australia and have had a j-pouch for around two and a half years.
    I was diagnosed with a severe case of ulcerative colitis very suddenly in 2013, and only a few months later I had a total collectomy. My surgeon said my colon was one of the worst he’d seen. Nine months later, I had my ileostomy reversed and things have been great ever since. Absolutely zero problems with controlling bowel motions or pouchitis and I have never had to take any medication. Although I do try to take probiotics every day and I am very mindful of my diet. I try to avoid processed foods and alcohol to maintain the remaining normal flora in my small intestine. There is a lot of research at the moment on fecal transplants improving the symptoms of UC, but whether it is effective in the long term only time will tell. There is definitely some evidence that suggests abnormal flora in the large intestine may be one of many components contributing to UC.
    Everyone has a different story, so I thought I’d share mine as well if anyone is looking for help.
    For anyone struggling with Chrones, UC or a stoma stay positive and try to make the most of every moment. Don’t let anything hold you back from living life. We’re lucky to live in a time when technology and medicine advance so rapidly.

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  18. Lucinda WIMMER says:

    i have a new( 10/17/16) permanent colostomy(LUQ)….My issues are 1. i never know when i will be evacuating all that soft stool…so i really dont want to go anywhere or go to bed if i might go soon. 2. there is a frequent odor so i wont even go down and visit my great grandbabies. i am suppose to change my apparatus every 3 days, sooner if needed.

    Like

    • ADAM says:

      Hello Lucinda, I have a ileostomy and had the same concerns as you when I had mine. To be honest even though you don’t know when it is going to start filling up, you will learn to gauge when it will. For example mine starts to fill about one hour after breakfast and a cup of tea. I know if I drink alot of fluids it won’t be long before it needs emptying. As for bed time try not to eat of drink to much after 8pm as this will help too. I guess what I am trying to say is that your body and mind adapts and it will become normal. I just wake up once in the night now to go to the bathroom, it used to be three or four times. I do worry about it smelling but as long as you manage it right and get a good seal you won’t get any smells. I check the size of mine often as it does change when you lose or gain weight, and the stoma nurses are great as they have lots of good tips. If you ever find the out put is too watery, marshmallows are good to bulk it up, and you can get small taps that obsorb output that go in the bag, saved me a few times during the night from leaks. I also have a waterproof bottom sheet as I have had to replace the mattress once already 🙂 as for seeing family don’t be put off, my nieces and nephews are really understanding, the younger ones wonder what it is but soon get bored and ignore it. If you have any more questions just let me know I have been there and had all manner of issues but there’s always a fix and support out there.

      Adam

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      • Janet maull says:

        i have an ileostomy so my output is liquid. It leaked at first but we use bravo strips around it now. I also put peppermint oil in last rinse of bag. I have no leaks or odor now. We change it every third day. We also pray afterward that it will hold and not leak. Hope this helps.

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      • Beverley says:

        If you keep your bag on for too long, the output disintegrates the wafer, which leaves you more open to leakage as it weakens the wafer.

        When you take your bag off look at the area that was around your stoma. If it is pale and raised from the output, it is on too long and this leaves you prone to leakage and to getting sore skin.

        I’ve said before on this blog, I don’t know why people don’t change their bag daily you change your underwear daily. Why wouldn’t you change a bag that holds your waste !! Then there will be less risk of odour and of leakage.

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    • Beverley says:

      Hi Lucinda

      I change my bag daily and I have no odour, so I suggest trying that, also it keeps the skin fresh and it won’t get sore, three days is too long.

      As a rule of thumb, eating triggers the vega nerve and that gives the signal to empty so generally, once you have eaten something it starts to come through.

      When you empty, open the end of the bag and wipe around the inside so that when you reseal there is no residue as it is that which can cause odour.

      Good luck

      Bev

      Like

  19. Char Thomas says:

    Hey! I’m a 66 year old woman and had 2 “strokes” of the large intestine 5 years ago. I got up one morning and had pain in my back. But no big deal…I’ve had 2 back surgeries. But within a hour I was on the floor screaming for my husband to call an ambulance.
    2 1/2 months later before I remembered anything and 4 months in the hospital. There was 2 blockages in my large colon. Emergency surgery to remove the large and about 24″ of the small. My body was septic (rotting), my kidneys shut down, I was on a breathing machine, I quit making blood (7 units) and most of my top teeth were knocked out from the multiple tubes having to be inserted down my throat. My belly wound had to be open (18 months), to be cleaned and packed each day.
    12 years my husband had his 1st emergency surgery and colonostmy. He has now had 19. All from diverticulosis and fistulas. So caring for him I was already familiar with the bags, skin problems, diet, etc.
    We have cried together, laughed together and Cussed all that would stop to listen! I have read everything tried new products (most all makers will send you samples). It’s a learning experience day by day. But I have never written to any sites.
    It overwhelmes me ! Even after all this time. But I will continue. There is so much more to tell.
    But my first suggestion, give this animal that’s attached to your belly a name! It took me 3 years, my Illestomy is “DARIS”!! He does what he wants and when he wants! I’m just along for the ride. This life experience is one of GODS funnies !!

    Like

  20. ADAM says:

    Hello, I really feel for you after reading your story. I have only had a ilostomy for the past five years but spent the whole of my 20s in and out of hospital with colitis. In the end surgery had to happen for me as I have crohns now too. Although I have been in a relationship since surgery I have just started to except my stomach now. I feel the best way forward is to not let this disease beat you and fight on. You will find out who your true friends are and anyone who doesn’t except you with it is not worth knowing. In my case I have this for life so going to make the most of it.

    All the best

    Like

  21. luuk says:

    I’m researching the internet because my father of 82 has been diagnosed with a tumor in the colon and will end up with a stoma. We are currently going through all the hospital visits preparing for the surgery. I’m concerned because he’s so terribly depressed and disappointed that he can barely talk about it. He could survive the tumor but will he survive his depression? He’s never been a man to talk about difficulties and quite honestly, he’s a bit of a fatalist but not in the good way. It’s comforting to read all these stories and I applaud you for your openness. I agree in that it helps to talk and find comfort in each other’s story. My heart breaks when I think of the fact my father probably doesn’t even want to know about blogs like this.

    Like

  22. Annette Peters says:

    Hello, My name is Annette and I am a registered nurse. I have had a permanent ileostomy for 5 years now. I teach ileostomy care to nursing students at the local college. I have a ton of information on this subject and would love to answer questions or talk more about my own personal experiences living with a ileostomy. I have lots of information on appliances, the differences and helpful hints on how to care for the stoma long term. I read on a blog about the embarrassment people feel when in a public situation where the ileostomy gas is expelled and can be heard by those around you. It is especially problematic at work for many. I did research on devices that would help silence the gas sound but all were cumbersome and very expensive. Since I wanted to resolve this issue for myself I invented an appliance with memory foam the covers the stoma but yet allows it drain and silences the noise. I have been using it for about a year now and it works perfectly and easy to use. I would be glad to answer questions about this as well. Thank you, this is a great site. Support is so important.

    Like

  23. Janet maull says:

    praying for all people with a stoma. I am having a hard time adjusting to a stoma. We did find use bravo strips where leaks are. I have no leaks now. My output is liquid, I put peppermint oil in my water to clean my bag out. Bathroom smells like peppermint when done. Bag never smells bad. I change my bag every third day . Hope this helps.

    Like

  24. ruthie says:

    5Weeks post iliistomy.just had my first leak/accident at home. I hate this. I hate everything about it. I hate the gp that suggested a prevenitive colonoscopy. I hate the surgeon that did it. I hate that I woke up in ICU with a shit bad attached to me!! I can’t even look at it. When my sister changes the bag I need a valium and I just cry. I stayed up all night Praying that Jesus would just take me home. I don’t want to be here and I don’t want to live like this. Everything still hurts! It’s all just so stinkin disgusting. I would rather be dead in heaven and remembered well then laying here in pain and complete disgust.

    Like

    • Beverley says:

      Hi Ruthie
      Trust me it does get better. I think your thoughts are perfectly normal, I remember feeling the same.
      I just felt I had been given a second chance to see my kids grow up. I too hated everyone, but you know what, ten years down the line, I don’t even think about it. It does not effect my life one iota. In fact when I had a reversal 5 years ago and had to have an ileostomy again two years later I was relieved.
      I could eat and drink whatever I liked. I love chilli but couldn’t eat it as it burnt my bum !!!

      Give your self a break it takes at least 3 months to feel panfry, get used to changing the bag yourself, you might be out and have a leak and need to be able to do it yourself. I remember fainting the first month but that passed.

      Enjoy life again

      Like

  25. Janet maull says:

    Prayers for you. I was in the hospital for two weeks I would not agree to the surgery. The 14 day I got so sick and vomited all day and night. I gave in. I still hate it and do not go to dinner with friends just my husband because I poop right after eating. I do take care of myself but hubby changes it I take bag off and shower and make sure it is clean. I also put peppermint oil in last bag of water. Never an odor. We also use bravo strips to keep from leaking. Also use hair dryer to make sure it is dry before wipes to make bag stick are used . Hope this helps

    Like

  26. Stewart Nicholson says:

    Hi I have just had a illostomy reversal operation four months ago I’m going up to forty times a day to the toilet other days I might go only ten it’s driving me up the wall does any body no does it get any better can’t stand much more of this

    Like

    • Beverley says:

      Hi Stewart

      I too had a reversal and was very unwell.

      It might be an idea to eat foods that thicken the stool particularly white goods, by that I mean white bread, white pasta, potato, peanut butter etc. You don’t want to be eating ANYTHING healthy so no fruit and I would also do minimal veg. Keep your diet very bland, you might find it is not so liquid. Also there are drugs that can slow down the bowel movement.

      Look at a blog written by Annette Peters dated 20 Nov 2016. She teaches stoma nurses, so she might be able to really help you.

      Good Luck

      Beverley

      Like

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