Struggling with Colostomy: Need Support & Advice

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VeganMidiMan

2 months since colostomy after 5 months of being unable to eliminate due to what was ultimately determined to be a problem with the sigmoid colon. Was needing colon cleanser 2x a day just to eliminate, which created a drastic weight loss. Some days are good I have good eliminations, other times, like right now, I feel blocked, bloated, nothing moving and I want to scream - or die.

Doc told me I would be healed in 6 weeks, I'm nowhere near that, although some days are better than others. My job/career is that of a performing musician and band leader, I've been unable to work for 2 months, going to try to get back to it this weekend but I am scared, if this doesn't go well, it's over. I will lose the band, due to the nature of the music business, I will lose my career.... and my income.

Then there's the loss of body image, the embarrassment for how I look, trying to figure out my options in this morass of ostomy products with virtually no help from the doctor and his office.

I don't sleep much, either out of fear and worry, or the colostomy deciding to start working at 3 in the morning, or the pain and discomfort. Doc told me there would not be a chance of hernia, yet I have a swelling on my abdomen where the stoma exits (CT says not a hernia, yet it is there, and it hurts). I am in pain, fearful, despondent. I often take anti-anxiety meds, and occasionally couple that with Percocet (only occasionally) to dull the pain and allow me to get some sleep, from which most of the time I hope I don't wake up.

Grateful for any support/insight/encouragement.

Bill

Hello VeganMidiMan. Two months post op. seems no time at all as it takes time to ehal from these sorts of things.  I find it hard to believe that a doctor would tell you that there is no chance of a hernia becasue the statistics do not bear out that view.  Anxiety could be at the root of some of your problems as it often results in some of the symptoms that you describe. This aspect needs a different approach to a 'cure' than the more practical management issues involved in the stoma itself but seeking to reduce anxiety is just as important. Loss of body image also falls into the category of a 'psychological' rather than a physical problem - which is of course the same underlying source as that feeling of not wanting to wake up. If you cannot tackle these issues for yourself I would suggest that you get help sooner rather than later.  Whoever helps you with the anxiety could also help with the other psychological and emotional aspects as well as they often emanate from the same source.

Two months post op should be enough time for you to be considering irrigation - if it is suitable and works for you then many of the problems you are having might well disappear and you could get back to a relatively 'normal' life - if you can describe a performing musician in terms of 'normal'.

Best wishes

Bill

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LadyHope

Dear VMM, welcome to MAO! Glad that you found this site. I am sorry to hear that you are having troubles with your colostomy. Please be gentle with yourself and give yourself time to heal from this major surgery. It is not only the surgical site that one needs to heal, I believe. It is also the emotional aspect as Bill described previously. Our body image has changed and although we have life, the body image change is difficult. As time passes, you will find clothing that better accommodates the stoma and some of your clothing post-op will be just fine. I found that my belly was really swollen for months and it took me about 6 months to really begin to feel better about the entire idea of having an ostomy. I wrote a short book about the journey in order to help others walking this path. Feel free to check it out. It is titled "Stanley and Me Make Three". It will post if you Google it. Also, I found taking baby steps in the beginning was helpful. I would accomplish small tasks and then work my way to larger ones. It will be three years for me with my ileostomy. It can't be reversed. One thing that I see as positive with a colostomy is irrigation. I can't perform the task with an ileostomy, but those with a colostomy who can are very happy with the results. Again, I will give myself some time to learn about all of this new stuff. It is a lot to absorb. Three years later, I am still learning new things about caretaking of my ostomy. Good luck to you and keep posting. Everyone on this site is so helpful. BTW - there is a regional ostomy conference being held in April. For more information, please Google the United Ostomy Association of America website to review the details. The site is also a very good reference piece as well. Sincerely, LH

Cuppatears

Sorry you are having such a hard time adjusting, just know that that is the only thing that is "normal" now. I hate the expression "the new normal" but it certainly fits. I am 17 months post-surgery, and have just in the past 6 weeks discovered a pouching system that is working for me. My cancer diagnosis came out of the blue (thought it was hemorrhoids) so, unlike many who suffered for years before the surgery, I had little time to prepare for it, and at first refused to have the surgery. I just could not see how I would be able to live a life, any life with a "bag" hanging off my belly. I started seeing a psychologist to help make the adjustment.

Well after surgery, the physical recovery went well, but the smell, the fear of leakage, and the many times the adhesive on the wafer failed, the constant checking to make sure everything was intact, quality of life was sorely lacking. Not knowing what food might set Il Disgusto off, no warning, just boom! At first I felt like every person passing could see, smell and hear that I had an ostomy, I slept fitfully afraid there would be an incident during the night. Somehow whenever there was a leak, even a small one, the wafer would separate at lightning pace, but the rest of the wafer was stuck as though it had been superglued. The result? Tears while I parted with yet another layer of skin, then developed an allergy to the adhesive remover I was using. So in addition, not just pain, itching like crazy!!! Many many trying days, some days changing the whole kit up to 3 times!

The one recommendation I have is to keep trying different products, not necessarily different sizes, try different brands until you find something you can be comfortable with. I'm telling you, it's made all the difference. On the day I was having my chemo port removed I told my surgeon "I may be able to live the rest of my life with this after all", (he said he always knew that I could), I showed him the product I'm now using. The new product (Coloplast Extra Convex Light), eliminated the pain, smelling the output constantly (near time to change it, after about 6-7 days I can smell it), faster change time because I'm not having to clean my whole peristomal area for 10 minutes (stool winds up IN the pouch, not backed up behind it!). So far the only problem I've had is that two of the wafers didn't stick, period, but that was from the moment I applied them, not a sudden displacement. The skin beneath the wafer is intact, not angry and irritated. Keep trying products until you get something that works for you, it will help so much with your body image.

And take it easy on yourself, this is a new phase of life, and it WILL get better, one of the best things you have done is to discover this site! Wish I'd found it before surgery. Something else that also helped me was seeing videos of children with ostomies, I felt like if they could handle this, for the rest of their lives, I surely could too, eventually.

Welcome to the site and even though my username is Cuppatears, the cup is just damp on the bottom, no longer overflowing.

Mrs.A

Hi VeganMiniMan,

Welcome to MAO. Two months is not very long in reality. Not everyone heals at the same pace as well. Given the doctor expected you to be healed, I too am sure he/she was meaning something other than what we know as all-over healing. Physically, it took me many, many months to heal. I also had much physical therapy to get my muscles strong enough to even hold the less than 100 pounds of flesh I was left carrying. Needless to say, I had a lot of muscle to build up and get back.

Please, please, please give yourself a break. It is not as easy for some of us as "they" say.

As far as your needing to get back to work, as we all have to, prepare yourself with a change of supplies and clothes to take with you. I hope getting back into your work will help you see that you can manage your ostomy without too much worry as long as you have found some products that work well for you. There are many places that will send you free samples to try their products, even from overseas!

I learned about many of them from this site and another site as well. I don't have any idea why you are in pain and having so much swelling, maybe you should get a second opinion.

I have to agree with the other posts that once you can lessen the anxiety, the idea of an ostomy will get easier.

I know all of us wish you the best in your recovery. Keep posting and we will keep trying to help.

 
How to Manage Emotions with LeeAnne Hayden | Hollister
veejay

Some helpful advice to Cuppatears....and anyone else with a colostomy, (if indeed you do have a colostomy and not an ileostomy)

Please do yourself a favor and look into irrigation. Once you get it mastered, you will wonder why you didn't do it sooner.

There will be "no more tears"....guaranteed.

V.J.

Cuppatears

Indeed, I have a colostomy. However, irrigation does not appeal to me at all, and I have no desire to 'master it'. Perhaps someday I'll have a change of heart, but it is not on my radar. I'm glad you found something that works for you, but it's not for everybody.

Immarsh

Hi, my name is Marsha, and I've had my ileostomy for more than 50 years, since I was a kid of 15. You are in the process of adjusting to this change of life, and I'm sure it's been a frustrating journey. This is the right place for you! There are several ways to manage a colostomy. Without irrigating, your body will find its natural rhythm, and you will eliminate when nature demands. That can be awkward, interfering as it does with a work situation. If you haven't yet done so, try to Google YouTube, to see what's involved with irrigation. I believe it takes about a half hour - an hour... first to put the water in (the stoma) and then for it to 'irrigate' the feces in the colon... and make its way out. You would be wearing a large pouch (a sleeve) that will catch the output... which you then empty. Some people irrigate once a day... others every other day. It's according to your body's needs and your preference. There should be minimal if any leakage from the stoma in between irrigation, but most people wear a small pouch, just for protection. I'm not an expert, but many people on this site are. It will take a while for your body to acclimate, but from what I hear, irrigation is a way to regulate your output. Body image is another thing. When dressed, no one else can "see" what you know lies underneath, so who knows who you tell is up to you. Learning to accept the changes in your own body can take time... I adjusted... as a kid, but as I've gotten older... (I'm 67) I've had to adjust to that process as well. As others have said before... be kind to yourself, read profiles of members, and reach out to the ones you think can help. Keep posting with questions... and people will respond. This is a journey... and a practical approach will help you through the most difficult times. Problems to solve... which pouch system, irrigation or not, find someone to talk to (a local ostomy group perhaps). Take a friend shopping with you and purchase some new clothes. The best gift you can give yourself is the gift of time. Best wishes... Marsha

mild_mannered_super_hero

Irrigation lets you be in charge of your ostomy. As it is now, the ostomy is in charge of you. I would remind you that there are many on this site who would love to irrigate, but simply cannot because they have no colon remaining. The choice is yours, but I assure you that you are missing out on a better quality of life. But hey, if you like stress and spending lots of money on medical supplies... well, just let your ostomy be in control!

iMacG5

Hey VMM, you've been offered some good advice from some kind, caring, knowledgeable folks here.  I'm not sure about the quality of advice from your surgeon.  A colostomy is a major medical procedure and six weeks is not enough time to completely heal.  A hernia IS very possible and you should do all that's necessary to avoid one. Percoset WILL constipate us and taking a stool softener with it can help. Take the anti-anxiety meds as needed and please understand your whole being went through and is going through a traumatic bunch of stuff.  Physical healing takes time and patience.  Our ability to cope has become compromised.  We now have new emotions and don't know how to handle them.  Healing our psyche could take longer.  The good news is you will be better.  An ostomy nurse could be a great help; way better than the Doc.  Keep in touch with us here.  There are so many of us who felt just like you and don't feel anything near that today.  We want you to be at least as good as we are and want to help you get here.  Keep reading and keep writing.  You'll find your way to where you want to be.

Respectfully,

Mike

LadyHope

Cuppatears, what a great post and an inspiration that things do improve with an ostomy. I am so glad that you found a pouching system that is working for you. I believe that finding the best pouch is the biggest hurdle for all of us. I also change up products too. Thanks again for posting. Have a nice evening. LH

Cuppatears

Thank you LadyHope, in my long-winded post I forgot to mention that when the psychologist told me that "it will get better" I told her that I knew that. I absolutely knew that it would get better, but it wasn't better THAT day. And many other days, I'm truly truly grateful that yes, it got better, and so much better so recently.

Sometimes hope is all you have to hang on to, so hang on tight to it!

LadyHope

Yes, I felt the same way. I needed hope that one day it would get better again and feel emotionally stronger. I did feel better eventually, although I still 'hope' for a miracle surgery or involving growing a brand new colon. Your post was so honest and moving, and I could relate to it so well. Thank you for writing it! I am coming up on 3 years for my ostomy surgery. I remember, all too well, how terrible and compromised I was during my 5-month flare. Ugh! I pray that I never go back to that time. My body was alien to me. Since surgery, I have had a few ups and downs but overall living each day to the best of my ability. My husband and I often discuss how some people are not familiar with illness as they are pretty healthy. So having a conversation about being sick and chronically is foreign to them. I am a communicator, but communicating illness is difficult. I find people so quick, and without thinking, begin to list reasons why the sickness occurred. I chuckle when someone tells me to change my attitude - the power of positive thinking. I am pretty positive. Oh well, they will never understand our medical journey until they walk in our shoes. Thank you again for a wonderful post. Take care and have a nice week. LH

blueonthetyne

Hi all,

What an interesting and familiar thread. Reading Cuppatears' addition, I worked out that I am now 22 months post-op and am in the same mindset. I was pushed in the direction of medical psychology at my worst point. It takes a long while, but a quick evaluation I made last week was the fact that I took my 4-year-old granddaughter to soft play ON MY OWN in the car when, after surgery, to get out of my dressing gown was a challenge, let alone leave the house and the safety of my own bathroom.

Nobody who does not have this unique thing can ever understand the fears and phobias attached. It's why I love this site. It may never change, but you will crack it and never be afraid to ask.

I know I'm rambling on now,

With fear of repeating myself, my motto:

I don't wear this because I'm unwell,

I wear it because I used to be unwell.

Take care all.

Mrs.A

I like your motto