I Met My Surgeon To Discuss Stoma Reversal Surgery…

I was going to write a post yesterday but I didn’t really feel in the right mind set to do so. But I’m feeling much better and a lot more positive today and ready to write about meeting with my surgeon yesterday.

Well, actually. We arrived at the hospital for my 9am appointment but the surgeon who was there throughout my surgery was not available, therefore I spoke to a doctor I’d never met before. Not exactly practical as he didn’t really understand everything that had gone on with my procedure, the fact it was emergency etc.

Any how, most of you will know I have an Ileostomy. Although it is not a loop Ileostomy, I was told there was a chance of reversing the stoma. Of course, that may come as good news to a lot of people who don’t like having a stoma. And when I was first told this, it was my end goal to my recovery. But having my stoma has changed my life. I’m in no more pain, I’m more active, I’m putting on weight more easily and I’m not relying on things like laxatives.

So, yesterdays appointment was to discuss a reversal surgery. I had of course researched it myself and spoken to others who have had reversals. As well as people that have actually decided to put off a reversal surgery due to the fact they are now living pain free. My research and conversations had left me feeling a little confused about the whole thing. There are so many risks in the operation, and chances that the reversal can go terribly wrong. There are also chances of having to have a new stoma formed, alongside having further problems with my bowel after it being reversed. I appreciate every case is different. Some people have some of their large bowel left and others have their rectum removed meaning a J-Pouch is formed. For me, my whole colon was removed. And a length of my rectum was kept. Meaning the procedure would entail my small bowel being reconnected to my rectum. Please don’t quote me on this, as I’m still not completely aware of what the whole procedure entails. I’m just piecing together what I was able to take in by the doctor.

Of course, I’d heard some horror stories about the operation. And I questioned these with the doctor. I asked him the pros and the cons of a reversal. I asked him of the main benefits. But funnily enough, although not having to worry about your bag may seem like a positive, that seems to be the only one. The rest just feels like a bit of a downfall to me. He told me the main benefit was that I would not have a stoma, and I would not have to wear an ileostomy bag. That was it. He said that for a lot of people, that is a huge benefit as they really do not like their stoma.

The consequence for me not having a stoma, and to have the reversal, means I would never be able to go to the toilet “normally” again. Meaning I’d live the rest of my life having diarrhea. Controlled by 3 types of medication daily. I’d be at risk of accidents and it would take a while for my bowel to adjust to yet another change in my body. In fact, the bowel may never completely adjust again. There’s a chance I can become worse with a reversal, meaning I’d have to have another stoma put in afterwards. And they would completely cut out my rectum and stitch me up to give me a permanent Ostomy.

The scary part of all of this is that it’s MY decision. When I first had my stoma formed it was by emergency surgery. I had no choice. But now I’ve been given all of this to weigh out in my head to come to some sort of decision of how I want to spend the rest of my life. I have to contemplate all of the risks, and prepare myself to expect a number of situations. It’s completely terrifying.

I have no issue with my bag at all. The only problem I face at the moment is occasional leaks and itchy skin from time to time. All I have to worry about is ordering in new bags and changing them. It feels these are the only issues I’d be getting rid of by having a reversal. It’s a cosmetic choice more than anything. Carry on as I am, healthy, active, pain free. Or undergo more surgery to not have to carry around my ileostomy bag on my stomach. Rely on medication forever, deal with a bad stomach and use the toilet frequently. Risk all of this to perhaps just undergo another surgery for a stoma, meaning it wasn’t even worth the time.

All of this was spoken about in my appointment with the doctor. I felt quite downhearted about it all, I’d hoped there would be a bit more benefit to having a reversal. I know it’s different for everyone. I know some people who have had reversals are fine, I know some people don’t even get the chance to have a choice. And for that I apologise. I don’t want to be selfish nor pedantic but I also have to think about what’s best for me, physically, emotionally and mentally. Everyone deals with things differently and I have been able to deal with my stoma well. I don’t want to fall 2 steps back and make a decision that I may not cope with in the future.

The doctor could see I didn’t know where my head was at, so told me to return in 6 months. I feel happy to do that. I’m happy with my life right now, and how I feel physically. I don’t feel insecure and am learning more and more about myself each day. I owe my life to my stoma and I don’t want to make any rash decisions to change that. I want to think properly and learn more about the procedure and the outcome. I’m not going to change my body to become more pleasing on the eye to some people. I’m more concerned with how I feel inside. Feeling healthy, and good about myself.

I know this post doesn’t explain much. But I thought writing it all out would possibly give me some point of direction. And it kinda has. I just want to stay the same right now. I’m finally healthy. I’m finally non reliant on pills and I’m finally not worrying about being in the bathroom 24/7. Having a stoma has made me so much more open minded and it has helped me embrace my body. It’s helped show me what I love about my body, and has stopped me focusing on the flaws. It’s not worth even thinking about change right now. Not now I’m where I’m happy being. No matter what anyone else thinks about the decision I make, it’s mine to make. And for the time being, that decision is to live my life being pain free, happy and with the world at my feet.

10991626_933260466731090_4375024831477500972_o(This photo shows me 2 years before my surgery & now)

Advertisements

12 thoughts on “I Met My Surgeon To Discuss Stoma Reversal Surgery…

  1. Derek S says:

    I’m going to be facing the same decision, I think, in a few months time. Ultimately, it comes down to quality of life. I think you’ve listed out the pros and cons clearly enough to know what each decision entails. I kind of did the same thing, And I *think* I know what my decision will be. This seems like a shameless plug, though I assure you it’s just for informations sake lol, I write about my own experiences, and recently wrote about this very thing –> http://lettersfrompangea.com/2015/04/11/neurology-my-ostomy-and-brain-fog/
    Cheers, and good luck with what ever you do decide ๐Ÿ™‚

    Like

  2. Trudy says:

    This is a great post, I just had surgery two weeks ago and I am thinking like you are. The stoma and bag may come with its own set of issues but nothing comparable to living with the disease and the pain; also nothing in comparison to the issues people have with the jjpouch. I have the j pouch inside but not sure I ever want to use it. Yes there’s a chance I will be one of the ones that has no issues ever, I’m not sure I’m willing to risk it, and have to be on meds again to control the issues; and ultimately having another operation and a new stoma site. Thank you for voicing my exact thoughts and feelings. Feels great to know I’m not alone.

    Like

  3. tbugsy says:

    Hey

    I’m surprised they would even consider not removing your rectum and creating a jpouch as that is where UC is usually it’s worst. I was physically in the exact same position as you after my first op and suffered really badly with bleeding and mucous coming from the remaining rectum until i decided to make my stoma permanent a year later.

    you are spot on with the “benefits” of a reversal. In my head I couldn’t accept that not having a stoma was worth the risks associated with a jpouch so made it permanent.

    All the best ๐Ÿ™‚

    Like

  4. Stacey hyrjak says:

    This blog has helped me over the last week as on the 16th April I went into hospital at St Richards for a removal of a lump in my bowel after a colonoscopy and ct scan could not determine what the lump was, I had been suffering with pain for years and told it was ibs, but after I moved in with my partner they could see the pain I was in and took me on a couple of occasions to A and E, after more visits to doctors finally saw a specialist and that’s when they discovered a lump.
    The op was not as straight forward as they thought my uterus and overies and bladder were all stuck to my bowel with what the surgeon suspects is endemetrious, I awoke 4 and half hours later with a stoma on one side and cafferter on the other, shocked and scared is an understatement it’s been just over a week I just came out of hospital, the stoma is sore at the moment and itchy but told that’s normal.
    Reading your blog and the fact your 16 years younger than mysel has helped so thank you I hope I can be just as strong as you in time.

    Like

  5. Melissa says:

    hey hun.

    I wanted to say such a massive thanks to you for doing this! My story:

    I was diagnosed on and off with appendicitis at the age of 14. Told it wasn’t and to go home it will sort itself out. Then had been told it was a muscle tear from the back of my ribcage to the front of my pelvis which I had extensive physiotherapy on. With a serious appendicitis attack on December 2005, I finally had my appendix removed. This came after all the comments of me being called bulimic or anorexic by multiple people and that ‘it was all in my head’.

    I had complications post op and never really recovered. I was discharged from the children’s hospital but got worse at home. They surgeons had noted that there was some redness around my intestines that would need further work up in the new year.

    The problem was I got worse. I couldn’t eat, was in so much pain and couldn’t sleep. We went away for the summer and I struggled to walk. My family were so supportive at this time and my mum took my temperature at 40 degrees. She put me straight into a cold bath.

    Later that night I noticed an extreme swelling underneath my appendix scar. It looked like I had 3 tennis balls sticking out one side of me. I was rushed to a gastroentologist the next day and was told if I didn’t return to hospital, I would die. That really shook me and off I went. After CT scans, it was revealed I had a double abscess formed in my appendix wall that needed emergency surgery. I was rushed into theatre and it was removed. It burst as soon as the surgeon removed the abscess. I received a blood transfusion and had a stoma made with a colostomy bag put in place and put into intensive care. This was just prior to my 15th birthday.

    After 4 months of living with a colostomy bag and finally being diagnosed with Crohn’s Disease, I had my final surgery. I had 30cm of my intestines removed and the opportunity to have my colostomy and stoma reversed with a chance of them not being able to. I was terrified but my parents had the decision to make with me being a minor.

    I am now 9 years post my last surgery and had the stoma reversed. My appendix scar was left open to heal by second intention and I have a long incision down the middle of my stomach with 28 staple marks. I take medication every day to try and stop my crohn’s from reoccurring and face most complications from crohn’s on a daily basis.

    I learned to live with my colostomy bag but it came with so many challenges such as going to school and people pointing at me saying things such as me being bulimic. I lost over 20kgs when I was ill but have made such progress over these 9 years. I am so thankful to my family and surgeons for making the best decisions to save my life – and in a way thankful to the colostomy bag for what it teaches you about life.

    You are in inspiration Hun, only you know what the best decision is but talk to those that love you. Don’t shut them out. You need these people in your life. It is manageable without the bag but only you know what’s best ๐Ÿ™‚

    If you ever need to chat I’m here knowing exactly what your going through but now as a 24 year old living with crohn’s. xx

    Like

  6. Sarah Melissa Tickner says:

    I have irrital bowels and i’ve had this since i was 12 they said if my condition gets worse i will need a life saving bag for my waste because i sometimes soil myself daily and people make fun of me for soiling myself i’m 18 and have to live my life everyday with trying not to soil myself i just read your story in the magazine pick me up and you have inspired me to show that if i do get bloated because of my irretal bowels that i shouldn’t be scared to show what i’m going through thank you for inspiring me hattie

    Like

  7. Rachael says:

    I am seriously considering a reversal after having a colostomy for 6 years and I would really like to hear from people who had successful reversal surgeries. All I read is negative feedback and it makes me second guess if reversals should even be offered. Please share with me your success or failed surgery story.

    Like

  8. Dianne Mahlert says:

    I had emergency surgery in July 2015 to remove a mass from my intestine. A colon resection was done, there was a malignancy, but 17 lymph nodes were tested and clear. However, the surgeon “nicked the bowel” during the surgery, sepsis set in, and four days later I had additional surgery, resulting in an ileostomy. I was told then that it could be reversed in 3-6 months. I was in the hospital 31 days, rehab 10, and had home health 2 months due to having a would vac. I have now been released by the surgeon, home health,and am on my own! No medication, no Dr.s! I am dealing with the appliance well so far and have started being concerned about reversal surgery. First of all, the surgeon screwed up the first time, so do I want a replay? Even if all goes well, I have read some pretty dire results from reversals from people suffering the consequences forever. My big question is “why not just stay with the ileostomy?” I haven’t read any downside except having the bag. Many say to talk with your ostomy nurse; I don’t have one, and never did. Any insight will be appreciated!

    Like

  9. Isidora says:

    Thank you sharing your post, my older sister was diagnosed with Ulcer Colitis, she had her surgery today, her colon was very damaged, she was in the hospital for over a month doctors trying to heal her, for over a year she’s been dealing with this pain, not one doctor could find a anything wrong with , even her Colonoscopy exam was clear. I was also diagnosed with the same thing, but I will taking medication. Thank you for sharing your post.

    Like

  10. Priscy Wilke (@pjwilke) says:

    My husband had a colostomy surgery this year in May after having Crohn’s for over 20 years. a third part of his colon was removed and now he wears a ostomy bag. He is not on medication at all so his gastro will do a colonoscopy and endoscopy on September 8. The last colonoscopy brought a lot of inflammation after he was “poked” who knows how many times to get a biopsy (his words, he knows his body even better than the experts so I trust and believe that that colonoscopy triggered the dormant pain and landed him in the hospital for the surgery). Anyway, he now needs to do this again and based on this the gastro will advise if he is ready to have the reversal surgery. My husband has been taking the whole situation with courage and getting used to the bag. I know doctors will tell you that you can even “run”, play “soccer” but it depends on the level of the seriousness of this disease, in my opinion. Not everyone may be able to do those stuffs so it is better to ask doctors for the nitty gritty of having a surgery. I personally I wish I could do more to help my husband, all I can do is to support him in his decisions. Like Rachel asked, I am curious to know more about their own experiences from a reversal surgery.

    Like

  11. austinfoodieblaze says:

    Oh my God, thank you so much for this post! I have been absolutely tortured about the possibility of reversing my stoma and the longer I have it and the more I flash back on the way life used to be for the 20 years before I got it the less I want it reversed. My doctor has made it clear that it’s my body and my decision and yet I feel that I am inexorably moving towards the stoma reversal. Fact is, I have to go under the knife in any case in order to fix the temporary herniation that comes with every temporary stoma and also to finally fixed the original surgical wound which I have had to dress everyday for a year and 3 months. I understand there are people that have had diverticulitis like I did but were more or less normal before the attack and have an opportunity to go back to more or less normal after reconnection. But I have had trouble with my bowels in one way or another, sometimes serious, sometimes minor, for at least 20 years if not longer. The last 13 months have been something like heaven. The main consideration that I have, similar to what you mentioned in your blog post, is fashion! That, and some ego and pride issues. Otherwise, I can see little reason for going back. Even if it was only six to eight months of adjustment in order to go back to so-called normal bowel function, even that doesn’t seem worth it at this point. Anyway sorry for the long reply but your post was really what I needed to read. It has been very difficult for me to muster up the courage to go to my doctor and say I do not want to have this reversed. I hope I have the courage to tell him tomorrow morning because the operation is scheduled for Friday. Please wish me luck or pray for me if you are so inclined.

    Like

  12. Stevr says:

    I’m Steve 29 years old I was shoot 9 months ago for trying to help someone. I ended up with an ileostomy and had a reversal operation that almost killed me I have another.go at it in 2weeks I hope.it.goes good and I get connected with no issues so I can have my life back it’s be a tough road btw thank you for all yourbsotries wish me luck

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s