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

Hi! My names Hattie Gladwell, I’m 19 and this blog represents my life with a stoma, and how I’m learning 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 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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128 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:)

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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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  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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  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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  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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