Three years of hell for Life!
All my life I had been relatively healthy, besides low iron and the odd migraine I had no issues. So to find myself going from that to living in the toilet, being diagnosed with ulcerative colitis (UC), a perforated bowel and an ileostomy within the year was a huge shock to the system. I couldn't understand how I could go from a fully functioning adult to not being able to stand, wash or walk without assistance.
I was living in a waking nightmare. I received a temporary ostomy on December 2007 and was told this would be my saving grace and it was as I was still alive. I know I should have been grateful but I couldn’t see past my self-disgust. I hated myself and I couldn’t look at my body without crying. On more than one occasion I considered what difference it would make if I just didn’t wake up tomorrow.
Regardless of my mental state I improved fast given I was so sick heading into the surgery. I still had at least two surgeries to undergo before getting my reversal and even then it wasn’t certain it would work, not that this stopped me connecting all my hopes to it. My recovery after my second surgery to create the ileal j-pouch didn’t go well, I woke up with staples from my breast bone to my pubic bone and was in persistent pain, finding myself living on Fentanyl patches to get the through day. After several trips to emergency rooms I was admitted to hospital with an infection after some investigation they found a peri-anal fistula.
My reversal surgery was put on hold as I was underwent surgery to repair the fistula in September 2008. From there I rushed through to the third surgery in October 2008 with the hope that a j-pouch would fix everything and I would soon be back to happy and healthy. I was sorely mistaken, soon after getting my j-pouch, I got pouchitis and my fistula returned.
I spent New Years that year in the hospital where I met my newest best friends, laying in the bed next too me. I had another failed fistula repair operation in January 2009. Only to end up with a third temporary stoma two months later. He wasn’t so bad, I even managed to ween myself off the Fentanyl, a whole different challenge, one I have chosen mentally to block from my memory, it only appears as a hazy view of throwing up and withdrawals that made my heart race as through it was going to beat out of my chest.
After six months I decided I could try working again and given Squish 3.0 was being nice I decided to give myself a break from surgery and got a good job as an accountant for a great company. It didn’t last long as more fistula surgeries and wound breakdowns followed, along with the development of Erythema Nodosum, which lead me to using a walking frame to get around before the age of 30.
Lucky for me I met my husband mid-nightmare and while another reversal was an option so removal of the rectal stump and with it all the UC symptoms. I was sick of hospitals and the sheer disappointment I felt after every visit to the specialist.
I wanted a permanent solution and for the first time ever I deliberated living with an ostomy for the remainder of my life. I got a second and third opinion and after some discussions with my hubby, we decided I would do it and in October 2010 I went permanent and had a Barbie butt created. As my fate would have it my rectal wound broke down and a further surgery was required in December 2010 to get rid of the infections.
This left me with a deep wound the size of my fist that needed to be dressed daily for over three months. I thought I would never be able to flop on the couch or ride a bicycle again but as the months passed the wounds healed and over time I could do all I could do pre ostomy and more. I have come out the other side stronger than before and so glad that I didn’t give up on myself. Since getting an ostomy I have married the man of my dreams and together we have travelled the world. I work and am a productive part of society. I run, I hike and I go to the gym. I also volunteer a lot of my time to help others going through the similar trials.
I do get worn-out and there are days where I need to take time for myself but in general I am pleasantly amazed with how my life has turned out and wouldn’t change it as without enduring everything I have, I wouldn’t be the person I am today and I wouldn’t have got the opportunity to meet my amazing hubby @shai-hulud.
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My Lord, what a story! As someone who has dealt with more pain, hospitals and surgery than I ever want to remember (but nothing compared to yours!!), I sit here and marvel at your courage, patience and persistence. (Like what other choice, did you have, honestly ... except the obvious one.)
(Do you think substandard / incompetent care was in any way to blame for this? Just wondering!)
Three years of what you have described does indeed sound like absolute hell. And as for your Fentanyl withdrawal, that sounds like exactly what happened to me the first and only time I took it. I was literally afraid my heart was going to give out before it wore off ... which took more than 16 hours. Double what they told me to expect. Now it's on all my medical records. Don't ever give me that stuff again!!
I am glad you lived to tell the story. But I'm so sorry for what you went through. That you've managed to make lemonade out of these sour lemons is a bloomin' miracle. Good for you!
That made me laugh, you would be surprised how many people tell me that they could never survive that and your comment is spot on, you survive because there is no other viable option.
My first gastroenterologist almost killed me, sending me home just before my bowel perforated sure that I was fine, even though I had lost 20kg and was in immense pain, so I would say yes, it played a part but what happened happened, I'm alive and that's what matters most.
Thanks for taking the time to read and comment on the post, I appreciate that a lot :-)
You Are a strong person. I work in healthcare in PT and can certainly empathize with you. You seem to have really managed to come through the challenges (past & present) and live well!!
It is said one can never really comprehend an experience in another person's live, without standing in that person's shoes.
The closest I ever got to your condition was when my Mom suffered a rectal prolapse nine months before she passed away at 92. I was personally nursing her through her final years and I cannot wish that fate of hers to be that of my worst enemy.
She was too frail by that time to have the condition surgically rectified and it had to be manually addressed, sometimes several times a day.
I take my hat off to you and your hubby for coping so well with your condition. My best advice is to optimize your diet so your body can best repair itself.
God bless!!
Thank you for your kind words. I am a permanent ostomate now so I don't have any flare-ups from UC anymore which is helpful. My hubby and I are pretty healthy these days because we feel better. :)
I am sorry you had to see your mom suffer through the last nine months. I feel for the support people as it must be very hard to see and not be able to help with the pain and frustration. I am sure she appreciated all your help.
It was a privilege having the opportunity to show gratitude - no way could I ever compensate for what I only much later in life started to realize a Mom has to go through raising a brat like me!
Haha yes hindsight is a wonderful thing.
What a great inspiration! I had mine reversed when I had my tumor removed and I'm glad for that, I'm not sure I would be as strong as you if I had to keep it. I'm so glad for people like you out in the world sharing your story and your hope and confidence. I know it's not always that way on your side of the fence as this could plague your mind on occassion. Thank you for sharing and encouraging others.
Thank you for reading. It took me ten years to accept it fully and even then I do still have days where I'm not overly impressed with my bodys performance but all in all I'm very happy I survived. As for not being as strong. I never thought that I would order could be either but when required I think we surprise ourselves because we have very little other choice.
O, what an inspiring story, i can imagine all what you have been through and am so happy you had the strength to move on. You have really endured much and its great you came through. You have a bright future ahead of you. Thanks for sharing your story and hopefully it should inspire others passing through same at the moment.
Thanks @frankabelle I hope it helps others too. It's hard but survival is worth it. 💜💜💜
Damn... Erin, you've probably heard this a thousand times and are perhaps sick of it but you are one huge, incredible, walking inspiration. Continue sharing your story across the internets! I'm sure that every sick person who reads it will be encouraged, even if just a little bit, to persevere through whatever personal hell they're going through.
Also, btw, Iit seems you made a mistake with the very first date mentioned... (December 2017 supposed to be 2007?) .. Not sure it's worth correcting seeing as it counts as an entire repost on your bandwidth.
Thanks @mandelsage i have corrected that now. I have zero bandwidth issues these days so that's a win! As for inspiration I hope I am insuring others to just keep swimming as there will be an end. Thank you so much for reading and commenting. It means a lot.
I love your resilience and tenacity, refusing to ever fully let self pity creep in and get the best of you. Thrive On :)
I am without words,
I wish you all the love and success of the world.
@ shai-hulud continues to take care of her you have a woman in gold!
I hope you already got over those three years of nightmare.
I am happy for you that your husband showed up at the right time and location and has given you countless emotional support along.
I'm wishing your husband and you good luck. Stay strong :-)
Thank you, yes I have got over those three years now, I even help others do the same which is nice. My hubby is pretty amazing, I am a lucky wife. :)
Proud of you, ma'am. Stay positive and strong :-)
Wow, what an amazing story! I'm glad to have been a part of you sharing it. Thanks for reminding me. Keep at it! You're up to 24 votes! With 130 views, so you've got an audience, you just have to reel them in.
Thanks, I know why the views are high with low upvote. I have about 3500 readers from other SM sites, I have been sharing these ostomy related stories and they have been coming through to read the articles but can't upvote.
Gotcha. Well, it happens just inside Steemit some too. Wow 3500 readers? What sites?
Split between, Twitter, Facebook, Instagram and my blog Insideout Ostomy Life. I have been a bit slack and need to get back to posting there as well lol. Steemit is too much fun, so maybe just slowly slowly bring my followers here. A lot are chronically ill so not interested in money but have time when well so its a possibility.
You might try snippets. Post here, then build a paragraph intro and link I the blog. If there was any easy rss feed you could even automate it.
Nice, I will add that to the learning list, I only just figured out how to get my google adsense back up and running and I am not sure how well that is working yet lol. Time will tell.
Haha, side note you have replied under alt account, you did that once with he whom shall not be named too. I found that using different browsers or front-end applications can help separate and stop the issue.
I'm purposely connecting @dolphinschool and @markrmorrisjr to try and overcome the low rep score.
And, if you really want to put your blog on steroids, go to IFTTT.com and learn how to use an RSS feed to broadcast it instantly. I've got stuff about it on markrmorrisjr.com if you're interested. I get about 30 backlinks on every post I put up there. I need to get in the habit of linking my stuff from here to there.
Upvoted ☝ Have a great day!
Thank you.
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Thank you that's awesome news.
Man, there is so much I can relate to in this post. The fistulas, wound breakdown, erythema nodosum, fentanyl and more. I am so grateful for the increase in ostomy and ibd awareness and resources like this that have happened in recent years. I remember when I was first diagnosed, it seemed like there was nothing other than a disappointingly uninformative webmd entry on ibd. Posts on social media, similar to the one you made here, were integral in easing my mind before having my own ostomy surgery. Thanks a lot for sharing!!
Thank you for being an awesome positive healthy ish... lol ostomate ! It's a challenging journey but I think we come out the other side stronger. I wish there had been more information when I first got sick as being young single and having an ostomy is a huge challenge and it's very isolating in the beginning, I have a good crew of friends now which is awesome!