Surgery Decision?

Any advice on how to navigate the decision to have your entire colon removed and deal with an ileostomy for the rest of your life? Do I want to take such drastic measures for the sake of being alive? Being alive and living are two really different things, right?

Lots of variables answer that question, and it's all an individual decision. Being alive is different from living. However, you have to be alive to live. So, if a person wants to live, they better be alive. What a person decides to do while being alive after the surgery is all up to that person. A person can either get consumed with it or thrive because of it.

Hi B,

Yes…….being alive and living can be two very different things, but they can also only be subtly different or even identical. Just depends on one's circumstances and ability to adapt. How you navigate the decision you're contemplating is to simply become fully informed about both options before choosing the one that appeals most to you, or best fits your situation and belief system.

You're making it sound like losing your colon is the end of life as you know it. I'd say you don't fully understand at least one of the options you're contemplating, as you're on a forum full of people who would wholeheartedly disagree with your assumption. One of your options allows you to still take the other option later if things don't work out to your satisfaction…….the other option does not. Seems like a no-brainer to me.

;O)

You made some good points, Alex. Perhaps I'm already being consumed and can't see the possibility of thriving. Maybe I should approach the decision with an open mind. Thank you for reading my post and replying!

When I first became an Ostemate, I was amazed to hear many people had their entire large colon removed. It was surprising to me that this was possible. Most go on to live a normal life with an ileostomy.

Read all you can about it. Read posts from Ostemates here who have had their colon removed.

Good luck.

My Ostomy Journey: Bruce | Hollister

G-Day Bsnflr2,

First of all, how bad is the situation that's causing you to have your colon removed? I had my colon removed in 2004, and I now have a wonderful ileostomy, yes, wonderful. I had been suffering with ulcerative colitis for many, many years, and now my life is fantastic.

I am now able to do anything and everything I couldn't do before.

The decision is up to you, but are you telling me that at 66 you're giving up on life?

Either decide to stay or goodbye.

Regards, IGGIE

Your life, your choice. Do you want to live or die very slowly, each part of your body falling slowly so you can do less and less by the day? Will you change your mind at the last minute and wish you chose life, but it's too late? Who knows? I chose life 36 years ago; it was the right choice for me. I can't say if it's right for you; only you can.

Choose life.

I'd rather have an ileostomy for life than live like a zombie during the years I had Crohn's disease, a walking dead skeleton who felt and looked like death warmed up pre-surgery; fast forward a few months post-surgery, I transformed into a fully functioning, healthy human being full of energy, with a huge appetite for food and life, able to travel all over the globe without a care in the world.

Choose life, it's f*!&ing amazing! 😊

Bsnflr2, Giving up is a one-way ticket downhill!

Usually, if we write and communicate - even dark thoughts - we are seeking to discover possibilities that maybe we are only in the early process of researching .......

Learn, learn, learn ..... this is a helpful step - become informed and allow positivity to balance an uninformed overwhelm .....

Honestly - please just try it.

Yes, as has been said - a colectomy opens up possibilities ........ but take care in what you wish for Bsnfir ......... cultivate your perception of the liquid layer in your glass ...... when traveling uphill, one needs to tip the sides of your glass in order to maintain the liquid within - for you may like the chance to 'drink' from your cup of tea once you have traveled up the hill .......... [sad to spill it all much up your car and never get drink hey] .... and know too, that we can empathize when we have a bad day, or become consumed by fear of our situation .......... the good news is stuff gets better if you can focus and not give up!

Think about driving up a steep hill with a half-full cup of tea ............

Virtual hug!

Good luck Bsnflr2 .....

Please do your research thoroughly - for you may be rewarded with active participation - rather than depend upon a passive side role.

Life can be good - but we also have the power to be unhelpful -- sometimes we can be our own worst enemy - BUT WE CAN ALSO BE OUR OWN BEST FRIEND and begin by helping ourselves to understand the bigger picture.............

We are all here to help - sometimes we just need specific encouragement at a particular time.

~ ~ ~ ~ ~ BW ~ ~ ~ ~ ~

From across the pond

I had really, really bad UC; it was so bad that I was a few weeks away from my other organs just giving up, and if not them, I was mentally close to giving up. Deciding to have the permanent ileostomy both mentally and physically saved my life. I have no doubts about that at all.

Yes, having the ileo isn't always calm waters, but it can give you normality, and then having the ileo will become normal, giving you the opportunity to love life again. Better energy levels, better mental health because you're not dealing with the condition that led you to need it.

Surround yourself with positivity, and the guys on here will always offer you advice and help. You'll be joining an exclusive community where we've all had similar situations.

Mr B 🙂

I had a similar choice. I had cancer that invaded all of my pelvic organs. I faced a choice between two permanent stomas, colostomy and urostomy, or dying. I very nearly died anyway. But to me, that was the coward's way out. I chose to survive, and I am getting my life back. I'm only eight months post-surgery, so I am still recovering and still learning. But I have never regretted my decision.

Scroll through the photo section of this website and you will see lives lived.

Everything in life is relative, and everything has a good side and a bad side. You have to decide, at the end of your pros and cons list, what will bring you the most peace. If I had been told, as a younger healthy person, that I would live the rest of my life with an ostomy bag, I would have said that was inconceivable. Relatively speaking, my life was unpainful and easy, so the idea of a bag would have seemed drastic. Fast forward, years later, the pain, humiliation, unpredictability, and life-sucking variables of UC and a permanent ostomy seemed so much better than that, and it is. Without sounding like an ad for ostomy living 🤣, I've done more in ten years than I did in the year and a half of UC and five years with a j-pouch. I look healthier, feel better, and am more empathetic and so grateful. Everyone's life and situation are different. I'd say make your pros and cons list according to how your life is now and see what comes up for you.

Hi B, welcome to the site. Forty years ago, I was dying from UC/Crohn's and on that horrible drug prednisone to try and control flare-ups, but I was tired of doctor appointments and taking medications. When my doctor suggested I talk to a surgeon to have an ostomy, I didn't know what the hell he was talking about—not like nowadays with the internet. When it was explained and shown in pictures, I was horrified, but I realized I would be able to live a normal life—working, helping raise our daughter, hunting, fishing. I agreed to have the surgery and have been living life as close to what my normal is, including having a second daughter and all the good stuff that goes with having kids.

I've had a colostomy for 11 months. Had to make a choice between living or dying very quickly in the ER due to a perforated colon. Like most of us, it wasn't easy for me to adjust to being an ostomate and all that comes with it, both physically and mentally. I can't do all of the physical activities that I used to, but I can do enough to stay relatively healthy. I do have days where I struggle mentally, but I also have a deep appreciation for the simpler things in life that I didn't have before. I hope you choose life. You will get advice, support, and love on here, along with a kick in the ass when you need it.

I am just going to give you a short answer here, as so many others have weighed in with great advice. I had an emergency colostomy at age 67, then an ileostomy around a year later when it was clear that the colostomy wasn't working. I had my entire colon removed shortly after, and so for the last four years, I have been living with a permanent ileostomy and no colon. I have a great life and do all the things I did previously. It does not restrict me or isolate me. I can truly say I have a better quality of life now than I did pre-ostomy.

Terry

I had UC and was sick, sick, sick. Medicines didn't work for me, or my body didn't do well. I had my colon removed. Yes, having an ileostomy can be challenging, but many here just find a new normal.

It depends on your situation and what you can tolerate. All I know is I am grateful to have the ileostomy so that I can still live life. Maybe it's not perfect; nothing is.

Learn about it and make the proper decision for yourself.

It sounds like some members may have read your profile. I thank you for providing all that information because it helps with answers.

You suffer from CD. Me too, since age 25. We are both close in age right now.

Doctors found some cancer in your large intestine. The polyps can't be removed surgically, so they are pushing for the ileo with complete removal of the large intestine. Sounds like a fair life-saving idea to me.

I had no cancer.

Some of us did.

With IBD, as you and I and several members here have it, the consensus is complete removal and sewn-up butt hole.

Speaking 8 years into being ileo, I hate it like your dad did. He was probably more miserable than me, though. He may have felt defeated. He lived only less than 2 years after a colostomy.

I'm very sorry to read that. And you witnessing all this. I don't blame you for having reservations.

But in my 8 years, I came to terms with my ileo. I rarely notice it. It doesn't stop me at all, but initially, it did. No pity parties allowed here, kiddo.

Alex and others have said it's up to you. What kind of person are you when confronted with adversity? You should feel the surgery is not so "drastic" as being 6 feet under.

Yes, you will feel devastated. We are here. Been there.

Yes, you will feel unsure if this was the right decision.

We felt the same. We got over it.

I think you have the stigma your dad left on you.

You are not him. You should not be him.

We can help every day, any day, you need some support.

Because we have been there.

I will bet you in about a year or two, you will be a positive force with what you will learn here from all of us. There are tricks, tweets, hacks, and even healthy laughs.

But it's up to you, hon. 💯%.

You just found the answer sheet to your S.A.T.s. 😆👍

I just stumbled across this site because I'm looking for a “Binky,” as Dr. Rehnke called it, a rubber expander to make the stoma hole larger to insert a catheter for daily intubation (over time, the hole contracts and the tube is difficult to insert).

I had a precancerous, extremely infected, bloody colon that had to be removed. I recall feeling hopeless and helpless when I initially had a colostomy bag; I learned I was extremely allergic to anything remotely related to latex! Life was really rough for a while… the BCIR operation in 2013 was rough, and the first pouch ruptured while I was recovering at The Palms of Pasadena Hospital. It was leaking, and I needed to have the procedure all over again. It was extremely discouraging, and I was riddled with infections. I was convinced that the mesh that was used during the hernia operation was causing massive infections. It literally turned into an open wound (a 6” hole in my stomach). I was told that the type of mesh wasn't the type that everyone was suing over! The type I had was quietly taken off the market (made by Pfizer), and no liability was assigned. I was told there was nothing I could do. I finally started healing when coincidentally the last piece of mesh was removed after six surgeries.
Now it all seems like a bad dream. Life is almost completely normal. I often forget my circumstances. Just learn what triggers gas and take some probiotics; you'll ease into a diet plan and live again! As I stated before, I often forget, my wife forgets all the time, and my 16-year-old son doesn't really even know what's going on with me… the only real tell is the stinky bathroom, occasional gurgling noises after meals, and hiding the catheter. 🤣

I can go all day without going to the bathroom. Life is what you make of it; right now, it's amazing. 😎👍🏽🇺🇸

Hello,

Hernia mesh. Irrespective of the material it's made from, all types have limitations and possible complications. I have a permanent colostomy due to inguinal hernia repair mesh that adhered to my sigmoid colon and bladder. Eventually, it punctured my colon; I got lucky with the bladder. All mesh was removed.

I did a lot of research after leaving the hospital. I learned a basic problem with mesh repair: Mesh should adhere to the hernia, but nothing else. Over time, mesh can adhere where it's not supposed to. Infection can occasionally occur too.

Companies are discontinuing some medical products because of lawsuits... not necessarily because the product was defective; it just wasn't perfect.

Keep enjoying that amazing life. I do.