A little ventilation

Is it normal for people to question your choice to get an ileostomy? I’ve gotten mixed reactions from friends and family. My husband was not on board at first until I started educating him (as far as my education goes), now he wants me to get it. He doesn’t want to see me suffering any longer.

When I tell other people, it’s almost like they think I’m nuts for wanting it. But they just don’t understand, IMO. Unless you have fecal incontinence, painful bms, blood, and torture, how could you?? 

It actually makes me worried for how I will be perceived in the future, assuming I will get the surgery approval.

Anyone else have this happen? Or are dealing with these things?

I should mention I have an ileorectal anastomosis due to colon cancer/Lynch Syndrome.

Hi and welcome to the site.  You are the only one (with your doctor of course) who can make decisions about your own personal health.  Others who have not lived in your body are simply not able to understand what it's like.  My situation is/was different from yours, in that I had to have emergency surgery due to a perforated colon, so an ostomy was not an option, it was a necessity.  It is natural to have doubts and fear prior to this kind of big change in your life, but I would encourage you not to let other's opinions sway you in any way.  Living with an ostomy, in my case an ileostomy, has not only saved my life, but improved it 100%.  I am no longer in constant discomfort and pain.  I feel good in my own body and don't feel like my bowels control my life anymore like they did before.  There are challenges living with an ostomy, but it is so worth it for the improvement in quality of life.  There are lots of people here to support you and help you with questions and advice.  I'm glad you have your husband's support on this.  If you and your doctor agree that an ileostomy is the right thing for you, go for it!  Stay in touch and let us know how things go.

Terry

Thank you, Terry! 😊 I really hope she approves! Is there a reason she wouldn’t?? 

I agree with Terry. This was a life saving  surgery for me and most of the members on here. Your quality of life will improve . Why would you care what others think and feel about you ? You don't need their approval.  Good 🤞luck.

You don't have to explain to anybody why you're getting it done. End of conversation!

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Thank you, everyone. I appreciate your kind words and support. 

My colostomy was a lifesaving surgery (cancer) and I am very open with family, friends & even many of my patients.  No one has been weird about it.  That said,  you deserve to be free of pain and enjoy your life.  Who cares what anyone else thinks, they don’t live in your body!  Anyone you loves and cares about you will be supportive of what you need to be healthy & if they aren’t - you don’t need them!

Had no choice on my colostomy.  Underwent emergency explorarory surgery at 7:00 pm.  Doctors said it had to be done right away.  Prior to this, I was sick as hell for about 3 months.  Turns out I had 2 perforations of my colon due to adhered hernia repair mesh.

Waking up at 4:00am from surgery was....... priceless.  For the first time in months I felt good!  No intense pain, fever, horrible cramping.  Ohhhh, I laid there, staring into the darkness, loving every second of it.

At first... Yeah!  It's tough to look at the little beast protruding from your tummy.  But what a joy to have.  Where would we be without it?

About 6 months later, I was offered reversal surgery.  My wife & I consulted with the Surgeon for over an hour.  In the end, I figured I've rolled the dice enough in my 66 years, decided to keep the colostomy.  

 

Hello Anne Shirley

 

May I suggest you use the top search window of the site to pop your own diagnosis in - for I think there are some very recent interchanges discussing ileorectal anastomosis - but I do not recall the inclusion of Lynch Syndrome.

 

Sorry I have no pertinient experience - but Others will come forward.

 

BW

 

Jayne

G-Day Ann_Shirly,  If your worried about how you will be perceived in the Future, don't worry. Unless you tell people you have a Stoma they would never know. Only my close friends know I have one everyone else have no idea. Ann_Shirly get it done and enjoy life to the full, you will get to love your Ileostomy. Regards IGGIE

Hi Anne Shirlee i,ve had an ilieo. for almost 40 years that saved my life, and in those 40yrs. only my family knows that i have one and i have been able to live a normal life of raising 2 daughters with my wife, working 40hrs. a week, traveling and so on, my ilieo. has caused some problems due to crohns and scar tissue but that has,nt held me back from doing, if you have surgery make sure to tell the surgeon to make the stoma at least an inch long so that it drains into the pouch and not pool around the stoma causing skin issues.  god luck 

It's not that unusual for them to question us especially as lots of us do hide health problems from family and close friends so they don't all know we've been going through I think it's good thing as well as raising awareness for all the different reasons for needing an ostomy it helps us to accept it more the more we talk about it, even more so in cases like mine I didn't feel ill or have any problems but had 1000's of polyps that were turning malignant. I've even had Dr's question me as to why I chose to have an ileostomy instead of J-pouch.  

Ben,

"I've even had Dr's question me as to why I chose to have an ileostomy instead of J-pouch."

?

BW

J 

Ditto. I discussed things with the cats and dog. They thought to me, Mom! You're so happy now! Don't mess with that!

I have an ileostomy, but cancer was not involved, nor was Crohn's or colitis. So, my first-hand experience is quite different from yours. But, my mother was diagnosed with colo-rectal cancer in the early 90s. She opted for chemotherapy before surgery, as she was revolted by the idea of a colostomy or ileostomy. Unfortunately, that was a mistake. Chemo did not stop the cancer from spreading and by the time she had surgery and an ostomy put in place, it was too late. She died a little more than a year after her surgery. The whole ordeal was devastating, not only for her, but for our entire family. I sat with her in the hospital for 4 months and watched her waste away. Nothing in life prepared me, my father, or my sister for that. We all firmly believed that she would have been with us a lot longer had she opted for the surgery first and, given my readings and discussions here, I feel even stronger about that. She was 69 when she died. Never should have happened so young.

Anyway. That's my 2 cents. :-)

Daniel

Anne Shirley, you hold your head up high with confidence knowing that you and ONLY you knows best how you want your life to proceed, what you’re willing to put up with and what’s best for you. Those who question you have no idea what you’ve been through. 💪 

I guess I was assuming you had already discussed this with your doctor.  No?  Where/how did you come to think that an ileostomy would be right for you?

Terry

Hey Terry, I have discussed it with my surgeon and she wanted to try a couple things first. I was doing Imodium and fiber pills + BRAT diet. Still having crazy bile diarrhea and incontinence. I do have Lynch Syndrome which leaves my rectal stump at high risk for cancer so it was an option to begin with. I denied her initially. But she said more than likely I’d need proctectomy/ileostomy surgery within the next 10 years.

I’d like to get my freedom back a little. Incontinence is horrible and it makes me stay inside constantly. At least with an ileostomy, there would be more notice and more control. 
Thank you for the reply 😊

G-Day Anne_Shirley,  I hope you go for the Ileostomy and that you look on it as a Badge of Honor, your life will be 110% better plus you have a new family here that understands you. Regards IGGIE  

Note to bro...yea u w30bob... i'm not the only one without a butt hole on this site..  but thank u kindly for the mention.

This woman obviously cares what others think.

Your reply, as usual, nails it. 

Momma would be proud. 

Poppa would have said " fudge them nosey pple. Who gives a rat's ass what they think"?.

It's nobodys business what you need done to your body to live.

 

If it seems inevitable that you will need it in the future then what I can say is that I recovered from surgeries in my 40's a hell of a lot quicker than surgeries in my late 50s. We mostly regret the decisions we don't make.

My friends, family and kayaking colleagues know  - but mainly because if we have a rescue situation or I need help it saves a lot of explanations for how I do things!

 I had no choice re ileo and it certainly has given me a lot more freedom, but if you have a choice, it is Your choice.

How long have you had the IRA? I completely read over that bit in my initial response. If it is recent, I can understand your surgeon's hesitancy. I assume she is thinking it can get better. What things are you trying to thicken your stool so more of the bile is absorbed? If it has been a while and nothing is working, I can understand the desire to go to an ileostomy.

What you describe is one of the reasons I elected to not get a reversal. For me, the ostomy is easier to manage. And more surgery scares me almost as much as it scares my wife. Losing your colon is a major life changer, IRA or not.

Daniel

Hi Daniel, I’ve had the IRA since 2/12 this year. I’ve tried metamucil which made me incredibly sick while I was still in the hospital. So they switched me to Citrucel. If I take 2 pills with food, I continue to have bile. 
im essentially on the BRAT diet. Bananas, rice, applesauce (unsweetened), bread. I drink at least 4.5 liters of water a day. I tried Imodium but that made my diarrhea worse!! ☹️

When I left the hospital, I weighed about 155. Now, I’m 145. I’m not really complaining, but I don’t want it to get to be too much. I feel weak and dizzy a lot of the time bc I don’t think I’m really absorbing nutrients. I have no stamina like I used to which kills my social life, on top of incontinence issues. 

Of course the choice is up to you…No body knows what you are experiencing in your body. I have an Ileostomy after having a postoperative secondary infection from my colon resectioning surgery…that has lead to a fistula…The ileostom has saved my life…Mine is temporary…I hope, I’m going through Chemo and afterwards I’m going to have surgery to repair my rectovaginal fistula…if the surgery is successful, I will have reversal surgery. 

But if you have the choice between an ileostomy and a colostomy…You might want to consider a colostomy…You have to empty your Ileostomy about every 3 hours and change it every 3 to 4 days…if you don’t put it on properly, you will be putting a new one one more frequently… It can be a steep learning curve to learn how to take care of an ileostomy…nutrition plays a huge role also! So you will need to give yourself grace and lean on your ostomy nurse at first!

I have been going to monthly ostomy meetings…i have found out that the people with Colostomies only empty once a day and change their bags once a week or even longer….Way more convenient. So, if you have the option between the two that’s what you might consider…bit if the ileostomy is your only choice…you will be freed from pain but you will have to learn a new normal of living with an ileostomy. 

G-Day 91,  You make an Ostomy sound more of a problem that it really is. Most people get along with their Ostomy than don't, and once you have a problem you learn from it and prevent it happening again. Yes it's a learning curve but it also get rid of the pain, saves your life and lets the Sun Shine again. Regards IGGIE

Ahh, you are not alone. I have certainly been there.  Everyone's situation is unique however I made the decision to have my colon removed as an elective surgery (recommended by three physicians treating me, and a fourth from an expert in the field who was a friend's medical school buddy).  After thirty years of low grade, mostly asymptomatic and barely noticeable Colitis, I started having high risk surveillance screening with twice a year colonoscopy, and eventually for underwater colonoscopies (called EMR, endomucosal resection, a relatively new procedure) to remove carpet lesions after long period of inflammation.  Suffice it to say, these procedures were invasive, time consuming and never brought the 'relief' of worrying, plus the samples showed low grade atypic cells, then high grade atypic cells, all felt to be the intermediate steps on the pathway to colon cancer.  

Being a brave (stupid and neurotic to my friendship circle, and an unsupportive boyfriend at the time--now long gone) soul

and a sophisticated consumer, I agreed with my care team that having an ileostomy would be preferable to constant screening and then treatment when I eventually got diagnosed with colon cancer.   Now I am speaking as a patient, but I am also a physician, I became one partly because I did not much like the doctors who treated me as a 20 something when I first got diagnosed with colitis, but also as an activist and huge believer in prevention.   I had friends ask me if I 'could drink bleach' or just kill myself rather than have a permanent stoma.   It really taught me a ton about how people cope, and what projections are imposed on individuals who make personal choices because of one's lived experience.

All I can say to you is this: the individuals that I have met over the years because I have had this surgery, have given me a depth and understanding of the human condition, that fifty-five years on this planet, and thirty years as a doctor did not provide.   I wish you good luck with your insurer and path forward.  Life is a journey in coping with adversity and loss.  Metabolizing that is a gift,

Be well, Lee Ann (in Santa Barbara)

I can understand why you want the ileostomy . I assume you have little to no colon left. And 5 months can seem like a lifetime when you are in agony. If you are going to need an ostomy at some time in the future anyway AND you are at risk for rectal cancer, I fully understand your desire to go to the ileostomy. That would give you more control of the situation and ease the pain of what you are currently enduring. Going to an ileostomy will be a learning curve, but not one that leads to a cliff.

We all want to see you get to a better place. For me, finding this site was a life changer. It has helped me put my own situation into perspective.

Daniel

Thank you, Daniel. This community is amazing!! I’ve learned a lot in such a short time, not to mention the support. I appreciate it.

Thank you 😊

Thanks for your advice. I unfortunately cannot have a colostomy. I have zero colon. No sigmoid, nada. My ileum was attached straight to my rectum, which the surgeon said there was a sufficient reservoir, but doesn’t hold up.

Emptying the bag 8 times a day sounds great opposed to painful diarrhea and bleeding up to 14 times a day. It’s too much. I do understand you have your personal experience, and I absolutely respect your insight.