Struggling with Isolation After Colostomy Surgery

Replies
22
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1334
shannondaniellegrant
Feb 17, 2023 4:07 am

I had a colostomy placed 3 months ago. I lost a third of my body weight and now look like a walking skeleton. The doctors can't figure out why they had to cut out 9 cm of what they call "concrete," and they say I'm lucky to be alive. Funny, I rarely feel lucky. Three hospitalizations later and running out of medical days, I wonder what my future holds. Will I die early? Will I leave a young child behind? Will I wind up homeless? They say it's reversible but keep pushing the date back. I cry a lot now and hate dealing with the bags, the insurance, the money lost. I get sick of everyone saying I'm lucky to be alive. I know I should focus on the positives, but that's hard for me. I've always been kind of a pessimist and this certainly hasn't helped my outlook. Please tell me I'm not alone. I feel alone.

CrappyColon
Feb 17, 2023 4:37 am

Hey, you're not alone :)

May I ask the reason(s) behind your colostomy?

What is your local support system like?

You've been through A LOT and navigating the medical world can be really hard.

Seeing a psychologist has been so beneficial for me. We aren't wired to do the easy stuff alone much less the hard stuff. I worked with one psychologist in the digestive dept. leading up to and after my first surgery in July. Now I'm with someone new for food aversion therapy. I cried when I realized my favorite pair of jeans didn't fit anymore (down a couple sizes)...in the grand scheme of things it's a pair of pants, but it was another change to my body that I didn't really have control over as it's a battle to want to eat.

It's ok to be upset, sad, angry...all the feelings, but don't ignore them :)

In my humble, non-expert opinion, everyone and their mom could benefit from therapy at different times in their lives.

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w30bob
Feb 17, 2023 4:49 am

Hi Shannon,

Girl, you've come to the right place!!! And you're not alone. Now everyone is different, and you have to remember the ostomy is supposed to be the 'fix', not the problem... so folks on here have a very wide variety of problems, but also that common "fix" that unites us on here. No one knows what any of our futures hold, which is probably a good thing... so I can't tell you yours... but the fine folks on here can and will help you any way we can.

So let's deal with the elephant in the room first. If your doctors really can't figure out what's going on with you... and why you can't gain the weight back... then simply put... you need to find better doctors. People seem to think every doctor is a good one. They are not. Just like anything in life, there's good and bad in every profession. It's your job to sort them out. I think if you can get the weight thing under control and figure out what's going on... your outlook will change.

I don't know where you live in South Carolina, but just type into Google "Where are the gastroenterology centers of excellence in South Carolina" and make an appointment at the closest one. This day in age there's no reason they can't diagnose your problem. Treatment may be more of a challenge, depending on what your issue is... but figuring out what's troubling you shouldn't be impossible.

As far as getting a reversal... if I were you I'd wait until I understood what was going on medically with your bowels before I'd go ahead and get reversed. Sounds like you've already spent enough time in the OR, so you need to figure out what's going on, get treatment, and then get healthy again before you reverse your ostomy. Surgical outcomes are always better when the patient is healthy... so help them any way you can by getting as healthy as you can. Then get the reversal.

Rest assured, you're in good company. No matter what's going on with you... there's folks on here going thru worse... and they should be an inspiration for the rest of us that we can get thru this. And you can too. It's always hardest in the beginning and then you adapt, improvise and get better. But you are definitely NOT alone!

;O)

bob

AlexT
Feb 17, 2023 4:50 am

You're not alone. You've got about 29,000 people on this site that have gone through similar stuff. Do we all feel alone and isolated when we first go through all this stuff? Yep. So, ask us anything you need, one of us will have some sort of answer and welcome.

Rose Bud 🌹
Feb 17, 2023 6:05 am

As everyone else has said, you're not alone! I got my ileostomy about 2.5 years ago, and it wasn't planned. I woke up from an emergency surgery 3 months after having horrible complications of gallstones. The decision was made by my sister since it was life-saving, and I was starting to go downhill on the table. I had one thing after another happen: septic shock, kidney failure, mini heart attack, collapsed lung, blood clots, diabetes due to a third of my pancreas dying, and wondered at times if I was going to make it and how much time did I have left, not to mention right before I was released, I got Covid. By the grace of God, in May it will be 3 years since all this started, and I've had two other major health issues since, but am still here! And insurance companies are all going to be a headache... I deal with them billing something wrong every other month. And due to all this, I'm now on disability and was only 42 when all this happened. One day I was fine, then the next felt sick with stomach pains, went to the hospital, and thought I'd be coming home the next day. Well, 2 days later, I fell into septic shock (not clear if the doctor nicked my colon during surgery... that's still under wraps so to say right now), but I spent 6 months in the hospital and lost my house and now live with family in the middle of nowhere. I also went from 245 lbs down to 130 lbs within a year, and my ostomy scar, unlike most, is from under my breast down to two inches above my whoha and is two inches wide because it was left open and had to heal with a wound vac. So as you can see, I've felt and at times still feel depressed, but there are good people on this site that are here for support and any questions you may have or sometimes just to vent because unfortunately some people don't understand what we go through day to day. I hate when people say it, but it's true: eventually it does get better... and just know if people can't accept you for you, then you don't need them in your life!!! And no question is too disgusting or embarrassing to ask!

 
How to Manage Emotions with LeeAnne Hayden | Hollister
AlexT
Feb 17, 2023 7:04 am
Reply to Rose Bud 🌹

I get lost in all this medical terminology that gets used on this site. Can you explain what a "Whoha" is? I just wanna make sure I'm understanding everything correctly.

Rose Bud 🌹
Feb 17, 2023 8:49 am
Reply to AlexT

Ummm Maybe your mommy and daddy can explain that one to you

AlexT
Feb 17, 2023 9:29 am
Reply to Rose Bud 🌹

I guess I'll have to figure it out on my own.

Syd34
Feb 17, 2023 10:38 am

Hi Shannon,

You are not alone. In January 2022, I had a biopsy operation on my sigmoid colon for any signs of cancer. The result was negative, but after 2 days, bleeding CT scan showed the join not healed, leaking, and had got sepsis. They rushed me to the theatre for a second operation in 7 days, and I woke up with a colostomy. In total, 18 cm of my healthy bowel was removed. They say it is reversible, but it requires two big operations to do that. I am just coping, but the indecision 1-whether to go for reversal or leave it as it is. 2-should I lodge a complaint against the surgeon, is messing with my mind daily.
I eat and sleep well but have a problem keeping my weight stable to 70 kg. I was 78 kg before the operations. After all of that, I am kind of happy, and life goes on with tons of unfinished tasks in the house and outside and what to do about the reversal.

I am waiting to see a psychiatrist, hopefully soon.

I hope my story can help you a bit.

NancyCat
Feb 17, 2023 12:39 pm

Hiya Shannon:

You are definitely not alone! We've all gone through all of the emotions and concerns that you are going through now. These days, you really have to become your own advocate! Research, research, research! I have done so much research since I got diagnosed with Crohn's in 1995, after many surgeries and finally my ileostomy in 2017--I had gotten to the point where whenever I would ask my docs medical questions about my condition, meds etc, they would usually ask me if I was in the medical field--lol. Support is always here for you!!! No questions are off limits so please feel free to ask us anything! We are all here to help you in any way that any of us can.

shannondaniellegrant
Feb 17, 2023 1:30 pm

Thank you all for your replies and words of wisdom. I too went septic and am back and forth in the hospital. I feel like the doctors don't hear me when I talk about my symptoms. I'm well educated and they blow me off like I'm a moron that doesn't know my own body. I'm definitely learning a lot of medical terminology but being dismissed as no big deal gets old. I feel like if they had listened to me 2 years ago, I wouldn't be here at all. Does anyone know a good lawyer that will take on the good old boots in South Carolina?

shannondaniellegrant
Feb 17, 2023 1:30 pm
Reply to AlexT

LOL. That's the private parts.

shannondaniellegrant
Feb 17, 2023 1:49 pm
Reply to CrappyColon

You said a mouthful there! The doctors don't know why my guts started to seize up. I hate eating...never liked food in the first place, but my symptoms seem worse when I don't eat. I try to explain to nonostomates that eating for me is like dieting for others. It's a struggle. I never cared for food and more one of the meds I'm own helps me hold the food down but takes all the taste out of it which is only exasperating the issue. I feel sick when I eat. I feel sick when I don't. I return to work next week and I'm terrified because I teach 7th grade in a rather violent school. Plus of course they are adding more to teachers' plate every day. We don't even get a planning period or a break all day due to low scores during covid. I'm terrified to return. Last time I did, I was there for 4 days and then was readmitted to the hospital for going into septic shock with literally no fever or other signs except nausea. I miss the old me...sassy and boisterous and fun. Note I feel like a zombie and have no idea how I going to make it through the rest of this school year.

SallyK
Feb 17, 2023 2:13 pm

Welcome. Someone called us 'Plodder-on-ers' in another post, and I guess that is what we are. I am almost 3 years with my awesome new accessory. I used to cry every day when I had to take care of it. Now I don't. One day at a time.

AlexT
Feb 17, 2023 3:00 pm
Reply to shannondaniellegrant

.

Ben38
Feb 17, 2023 3:54 pm

Yes, at times I have depression and anxiety.

I haven't even got a doctor for now. My last one retired a year ago and so far no one else wants as they say I'm too complicated!

It's early days for you and going through a lot. Try and get out more, even if just for short walks, and meet family and friends and talk about how you're feeling, just as you are now with family, friends, and on this site. Talking really does help.

w30bob
Feb 18, 2023 2:30 pm
Reply to AlexT

Alex, I'll send you a personal message and explain it all. Should I include some pics too?

;O)

w30bob
Feb 18, 2023 2:48 pm
Reply to shannondaniellegrant

Hi Shannon,

How doctors respond to you is typical, it's not you. They've been told, and firmly believe, that what they've been taught is the right way and the only way... and the sheer amount of knowledge required to be a doc is just too much for anyone else to comprehend. And to some extent that might be true, but the problem is there's no middle ground. From their perspective you're putting them in charge of your health care when you hire them... which is what we do. So they do what they were taught, and really don't know any other way of doing it. To get through med school, your residency and then work among your peers you have to walk the walk and talk the talk, or you'll instantly become an outsider and cast out of the club.

Trust me, I get as frustrated as you do. But you have to look at it from their perspective too. You'll find the older docs, with the most experience, the most "flexible" for lack of a better word... because they've experienced firsthand throughout their career that what they know and do doesn't always work. So they may be a bit more open to other things. But the young ones are robots. They're going through the motions and will not deviate from what they've been taught. No matter what. Because to do so would be devastating for their career.

On the flip side you have to be careful of letting them think you know too much. As the saying goes... some knowledge can be dangerous. If they think you do know as much as they do they'll start talking to you at a level that's way over your head and you'll instantly be lost. It's a fine line. And it's always good to let your Docs know that you know what's going on, and challenge them on their decisions and suggested courses of action.

As for not listening to you 2 years ago... that's common too. That's a tough nut to crack legally. You'd be putting your medical expertise up against theirs in a court of law. Not saying it's a bad thing to do... but statistically... you'd be way better off playing blackjack at a casino.

Hang in there girl... you're gonna be just fine. Or at least OK! You have to keep your sense of humor through all this... it'll save your sanity!

;O)

CrappyColon
Feb 18, 2023 3:23 pm
Reply to shannondaniellegrant

Women (can be) treated differently and have issues written off because an M.D. may attribute her issues as emotional/mental/psychiatric. I'm not saying that's what has happened at any of your appointments, I obviously wasn't there. And it can really suck until you find a Dr. that will listen to you. I have a friend that has received great care at the hospital she works at in VA, but that might be further than you'd want to travel. I know something I try to do at every appointment and before they put me under anesthesia is I make sure at least one person in that room sees me as a person... a mom of young kids... and not just a patient. Don't feel bad standing your ground, you're fighting for you.

Mark1070
Feb 18, 2023 5:25 pm

You're courageous for reaching out and you're in the right place. Many of us have felt similarly post-surgery. My post-surgery depression lasted about five years until my health returned and I met some great folks (on this site) then picked myself up and got back to the activities I enjoy and even found a few new ones. Work on getting healthy and talking it out for now. You'll feel better soon. Don't wait for reversal if at all possible. Get back to the things you enjoy as soon as possible.

CrappyColon
Mar 18, 2023 8:37 pm
Reply to shannondaniellegrant

I am amazed you work with 7th graders in a school like that in/of itself is stressful. Then add on all the medical issues you have going on. I feel like eating is work, so I think we're kind of on the same page with that one.
I think your sassy/boisterous/fun self is still in there; it's just being pushed down by other things right now. Try and pull one of those characteristics out on a good day and see what you can do with it.

Charlyne
Mar 28, 2023 3:23 am
Reply to AlexT

It's a tutu

Shawn57
Sep 30, 2023 5:11 pm

Clearly, you're not alone. I had this 50 years ago and there was very little opportunity for outreach such as there is now, although I did have a pen pal in Sweden for a couple of years and there were meetings that were put on by the United Ostomy Association (never cared for those, everyone was always so much older than me) and there was a magazine, but I had no people I knew personally. Lots of good advice here. Just take each day and make it your best as you can.