Recovering from Colostomy: Seeking Hope & Support

Hi - Eight days ago, I had 15 inches of my colon removed and a colostomy placed due to severe diverticulitis with abscesses. It appears I've had this for a long time and it went undiagnosed, with my first bout in August of 2015. I almost died, they tell me.

Now I have this bag, and I'm overwhelmed.

Aside from being exhausted from major surgery, every twinge makes me anxious.

Has there been anyone here who's recovered swiftly and gone on to lead a normal life after this?

I can't even begin to describe the horror of waking up and learning I have a bag on the outside of my body collecting my waste.

Thank you for any support.

Hi PNWGIRL, I have had my ileostomy for 30 years. And because it saved my life, I accepted it. It was rough in the beginning, but once I learned to deal with it after healing up from surgery, I was able to do anything I wanted. I could travel, swim, ride my 4-wheeler, stuff I couldn't do when I was sick and always in the bathroom. Good luck.

Hey girl, you'll be OK.  You're brand new to this and you'll learn a zillion things from great folks here.  Your life will be way better and, before you know it, you'll be giving advice.  Be patient.  Maybe get something for your anxiety.  Stay in touch and it'll all be good.

Respectfully,

Mike

Every morning you look down at it, just think it's your own contribution to "keeping Portland weird".... You'll be fine before you know it.

-Alistair

April 12, 2012

Eight hours in the OR, removal of 4 masses of colon cancer and after five days I went home as a new ostomate (with an ileostomy), six months of chemo and radiation, I was finished with the interruptions.
During these six months, I continued working, and now except for having this nuisance, I live my life almost the same as before.

You might want to check out the interview a student journalist wrote:

https://theroguemagblog.wordpress.com/2015/10/22/whats-in-a-bag/

If you want help or more info, you can wink at me.
I wish you well,

Cheers

Ed Maste

Hi Ron - Thank you so much for responding. I am grateful I'm alive. Just overwhelmed, I think, and still exhausted from surgery.

I have lots of questions - like what's the best disposable bag on the market in the USA. I began with the one you empty and then switched over to a closed pouch system that's disposable, and I think I'm doing something wrong because I think there's an odor.

Thank you again.

Hi pnwgirl. Really feel for you. It's a long road. Mentally and physically! Very early days for you but you will be okay eventually! Xx

Hi pwngirl,

What you are going through is scary, but you can live as normal as you want to live. At 44, I was diagnosed with colon cancer and when it was all said and done, I had a colostomy. I am a firefighter and I thought my career was over. I researched for about two months before the surgery and by the time I had the surgery, I knew that when I was healed, I would go back to work. I am in my third year as an ostomate and I still hate the bag, but I am alive and still fighting fire and living life on my terms!

That is pretty similar to my experience, abscess in diverticuli with stricture, they tried a stent with antibiotics for a month but that was not fixing it, first they cut much of my colon out, left me with a colostomy. Then during a reoperation to take it down they found more strictures so they cut out the rest of my colon, had an ileostomy, that was the worst, my skin could not deal with the causticity from the poo in the ileum, the bag would not stick properly cause my skin was so messed up., lived with that for six months, dermatologist gave me a prescription for my skin in the meantime. It was hard to work with a bag that did not stick, my employer let me work from home during that period. So almost two years after the stent I was referred to a colorectal surgeon, because I had so little colon/rectum left, they did a reconstruction surgery followed by a total reversal. A year after that I have a Hartman's pouch, take Imodium about once a week when my poo gets really runny, can work at the office. Much better than when I was in pain and did not know about the abscess and stricture.

Still trying to get my energy back up, vitamins are not absorbed as well with no colon, but when I cleaned my mom's house out a few years ago I came across my aunt's death certificate, "rupture due to abscess with diverticulitis and stricture". I would rather live with a bag than that, but glad I no longer have to

I have had my ostomy for a year and a half. At first, it was so overwhelming all I did was cry. I didn't think I would ever get used to it. But now things seem to be going well. I usually only have to change the bag about once a week, and it doesn't bother me anymore. Some of the problems I had before this surgery were much worse than living with the bag.

Hi Pnwgirl

I have had a permanent ileostomy for 5 years, and I can do almost everything that I could do before the surgery. I can eat almost anything as long as I chew it really really REALLY well. I can swim, ride my bike, go to the gym - I just have to be a bit more careful.

I think that the most important thing is that you have a good attitude. Don't feel that you are damaged in some way - you are not. Don't feel that you can't have a terrific life - you can. Yes, you will have some accidents (we all do) - just shrug them off. Hang in there, and don't be frightened.

Best of luck!

Sandi

I have had a colostomy for 15 years due to severe diverticulitis. I ignored the pain for quite a while. I was devastated and cried a lot. I now think some of the crying was due to pain meds and an open wound. I had the best ostomy nurse in town. She helped me with leaks and choosing supplies. She even made me laugh. I am fine now. Everyone who knows me knows about the ostomy. I tell them because I want to help educate. The only things I had heard about ostomies were negative and not true. Take your time healing. You will find what works best for you. Stay positive and keep talking to people who have been there. I called strangers with ostomies so they could tell me I would be fine. Best wishes

Ostomy nurses are the best. When my wound was bright red and totally inflamed because the poo was leaking into it, they not only cared, they tried everything they could think of.

I donated all my leftover supplies to them a few months after I got my reversal, and I knew it would stick so they could try different things with other patients in distress.

Hi, I'm so sorry you're going through this anguish!

You are not alone - Feb 18, I had surgery to have a complete

hysterectomy because I had ovarian cancer. Unfortunately, it

went into some of my lymph nodes and a very small portion

of my colon near the sigmoid colon. My Gyno oncologist didn't

want to take a chance with healing even on a small portion

of my colon during the chemo, so I have a temporary

ileostomy until August... I cried for 2 weeks prior to the surgery

for a number of reasons - but the main one was the possibility of

an ileostomy.... There was no way to prepare for it - it's such an unnatural

change to become accustomed to... I'm looking as much forward

to the reversal date as I am finishing chemo this summer.

What I'm learning now is there are new "normals" in my life that I'm adjusting to. I'm learning to take things one day at a time and not be too hard on myself.

I'm glad to be alive - and on a road to empowerment and recovery. Don't try to take it all in too much all at once - just take things one day at a time right now.

I had so many issues with my surgery - some of the cancer went into and affected my ureter, so I had a urology surgeon on board as well, to fix that and so I also went home with a temporary Foley catheter for two weeks or so!!! Talk about too much to deal with..

Sending you love and light -

be well - Laura

That had to be an extremely scary experience. I was reading one of your other posts on another thread and I do believe you were near death's door. Your bowel isn't supposed to be leaking into your abdominal cavity.

I have a colostomy due to colon cancer. I had surgery just this past December, so I'm pretty new at this, but I am very happy with things. I don't hate it or hate life, and I am certainly grateful that my surgeon could save me. :) I had surgery on December 14th. I was in the hospital a few days and came home on the 17th. It took a good two weeks before I was comfortable enough to change my appliance without blowing a leak. I remember changing it three times in one day because I had no idea what I was doing. I live in a rural-enough area that there aren't stoma nurses. I gleaned as much information as I could from the stoma nurse where I had my surgery. I am a registered nurse, but it has been at least 25 years since I'd taken care of a stoma or an ostomy of any kind. They sure have changed!

I went back to work on the 4th of January (I'm a nurse educator -- not of stomas). I've done really well and change my appliance about once a week. I've had to try out a bunch of different companies and if you ask them, they'll send samples. Out of all the ones I've tried, I've settled on one that "fits me". I've decided that the ring barriers are wonderful instead of using paste. I use moldable flanges which used to fit around my stoma, but my stoma has since shrunk. Right now, it fits just right without molding. Pouches are a matter of preference. I use one I can empty, and I have a bunch of them, but I've discovered disposable and flushable liners so I'm not messing with emptying my pouch anymore. They are heaven.

There are many threads here that address matters for us newbies. I went to the forum called Tips from OstoMates on your far left. Read through them all and applied a few to my life. It's just something I have to live with and I choose to do it with humor. My husband calls my pouch a Whoopie Cushion because it often sounds like a whoopie cushion when it starts to "talk". It gets more interesting when it starts to talk when I'm lecturing!

Thank you so very much. There are so many unknowns, and a lot of fear. My worst case scared of course is a blowout or a leak. The smell just about kills me.

Thank you again.

Thank you :)

It feels good to know I'm not alone. I'm not normally a crier and I do that a lot. Is your bag disposable or do you empty it several times a day? It's the handling everything that is freaking me out.

Do you have access to the Visiting Nurses?

I had that for the first 7 weeks as well as the Ostomy clinic here in my city so I was lucky. Also, my

Husband, bless his heart, changes the bag for me

He says it's no big deal! Now that's love.

Never had a blowout - those wax rings really stick

Well. Hang in there - one day at a time..

Laura

Hi pnwgirl,
It is a scary and troublesome experience. My first "stomaversary" was February 24, just a bit over a year ago. I had an emergency surgery done for an abscessed diverticulitis and when the doctor made the incision to remove it, the abscess burst. A much larger vertical incision was made so they could clean the poisons from my body. During that, they found a large section of my colon that was discolored and the surgeon removed it and fitted me with a colostomy. The lab report came back positive for colon cancer. I underwent six months of weekly chemo treatments. I have been able to accept the bag because the other option would be to be dead. I prefer to be alive. I have been able to return to a relatively normal life. My current struggle is I am single and would love to date but am uncomfortable with how and when to explain about the colostomy. This has been a life-changing event and although I have accepted it, I don't know if a "significant" other can. I've had experiences with "accidents" because the bag did not adhere to my skin well enough. This can be embarrassing but fortunately, I was home when it happened and alone. I've had to change my entire wardrobe as none of my clothes would fit without interfering with the output. Since the colostomy was not something that was scheduled, the surgeon could not measure for placement. My whole experience last year has changed me but I think for the better. At first, I didn't want anyone to know what had happened to me but now I am ready to share it with the world in hopes my story may help others. Just know you are not alone in this world of "front butt strutters". Be patient, give it time, and I am sure in a few more months you will be feeling stronger and that will allow you to return to more of your normal activities. This is major surgery and for you to have had it just three months ago means your body is still recovering.

Hi, the same thing happened with me 6 years ago, and I know how you feel. The way I looked at it once I felt better and you will feel better, I promise (I was alive) and 5 months later I was swimming in Crete. It will take you a while to find out what works for you, but if you have a good stoma nurse, she or he will be invaluable. Also, the internet is great. You can look at different companies and send for samples to see what works for you. It just takes time, and you will be fine. I am still finding out new things.

It will get better, I promise. I knew I was going to have a ileostomy because I was in so much pain and confined to my room so I could be right near the bathroom and had no life, and as I found out after the surgery, I would have been dead if I continued to go the way I was going. It has been 4 months now and I am out and about and went swimming this week, so much better. Yes, it is a pain having the ostomy bag. I cried a river and had several leaks to deal with, but every time I was in that situation, I could get home quickly, so I was lucky. Still searching for the right fit but have a good ostomy nurse to help. One of the things that helped was my support system. Every time I tried something, like going for a walk, grocery shopping, getting my nails done, etc., everyone would tell me how great I was doing and that really helped. I felt like a milestone every time. Hang in there, it will get better.

What's normal? Lol. Yes, you can and will have a life, a different one perhaps than you thought you were going to have, but a life that can be full and rewarding. I lost my entire colon 25 years ago and had several revisions since, but I go on because the alternative wasn't something I wanted. PNW means Pacific Northwest? I am in California near the Oregon border. I often go to Medford/Ashland area for shopping. Are you near?

Judi

Thank you all for your help - I don't feel so alone. I hope in a week's time I'm more comfortable.

Hello,

As far as bags go, it all depends on your body type. It will have to be a trial and error type of thing...for me, Convatec was the best as it is moldable and moves with your body. I didn't have a flat tummy, so these bags worked best for me...good luck on everything, it is overwhelming at first but everything is better with time...one day at a time and before long, you will be a pro...

It will take some time to become acquainted with your "new Friend", the bag. I have had mine for 3 years now, and still have some moments. My husband has been very supportive, and he always helps when I apply the appliances. Best of luck to you - it will get better - I promise!

Hi,

I too am new at this. I've had my bag since July 17, but they woke me up to tell me about the procedure and I agreed. I had a bowel blockage that perforated, and I was septic when I got to surgery. They said I died three times on the table.

I'm getting ready for a reversal much sooner than I expected, but it's because I'm having such problems with my stoma. It is inverted, and nothing I do keeps the bags sticking. I still have bleeding and pain. I've had corrective surgery, but no help there.

It's scary to go under the knife voluntarily again, but no, I don't want to live like this.

Scary too, what if it happens again?

I know what you mean about being jumpy. I hardly leave the house at all. I have to change my bag twice a day sometimes, and my skin gets so sore.

I use the crusting method to protect my skin because I'm always exposed to fecal matter.

Good luck,

CharK

Hey Clark, I'm so sorry to read about your situation but I think there's lots of reason to be optimistic.  Living with a stoma is far from the worst thing in the world but it's got to be a good stoma, properly placed and protruding enough to set the appliance without concerns about damaging the skin.  Sure, a complete reversal would be good but I wouldn't be too quick to get that done.  Eight months is not a long time and, if you have a recessed stoma, maybe you'll never get comfortable with it.  My suggestion is you get a second opinion from the very best CR surgeon even if you have to travel some distance and stay in a hotel for a day or two.  We need only the very best surgeons relocating our pipes.

Wish you the very best.

Mike 

I feel for you. I went to the hospital with a stomach ache last December (2015) and woke up with a colostomy bag. Granted, it saved my life, and I was grateful....all of that good stuff.....but it was no less of a shock, and scary as hell to even think about being responsible for taking care of "it" and that huge stapled up stomach on my own.

Side bar: My ostomy was the result of a blockage due to adenocarcinoma of my sigmoid colon. I was lucky, no lymph involvement and a clean liver biopsy. Bloodwork has been good so far, knock wood.

I think a lot of the emotional aspects at the beginning were also due to the anesthesia. I was pretty much a basket case with huge ups and downs....crying a lot. My poor husband was a real trooper.

I wish you well, and hope you have a speedy recovery.

It is very overwhelming in the beginning....but here's the takeaway....it gets easier, mentally and physically. The first morning I went and took a shower it took me two entire hours from start to walking out the door. Now it's second nature, and even though I'm still not a fan of wafers and bags....it's very easy to get it done.

I had my ostomy surgery in August 2015. I had perforated diverticulitis. I had no idea that's what happened. I was in the hospital for 13 days, then had to go to rehab because I was so weak. I left rehab in the second week of September. I too have to thank my surgeon; he saved my life. I was so upset when I woke up after surgery to find out I had an ostomy bag. I'm still trying to get used to it. I can't leave my house until sometime after 10 am because my pouch fills up in the morning, and that's when I change it. I was using Convatec products, but recently tried Coloplast products and I like them better. My surgeon told me he will reverse it in August if all is healed. So I'm scared but excited about that.