Coping with a New Colostomy - Seeking Advice and Support

I underwent an emergent colostomy in April. Depression, anxiety, fear...every day I wake up and my first thought is "Was that a nightmare?" ;Of course, the answer is always the same "No." Every pain frightens me....I am also dealing with a slow-healing incisional infection. I need to shower twice a day, then do dressing changes three times a day. And I have no energy..I feel as if I was hit by a truck. It takes tremendous energy to not fall into a day-long state of depression. And now I am dealing with leakage. I feel overwhelmed. I was hoping that some of you might be so kind to share your stories of how you coped with the initial stages of this new way of living. How long did it take for you to take back your life? Many thanks.

Emra, hi. I have an ileostomy since 10/10/2014. It was totally unexpected as I was in the hospital for a blood clot in my right calf, caused by a routine colonoscopy. An overzealous surgeon took it upon himself to relieve me of my right ovary, gall bladder, and entire lg colon. Pathology later showed nothing other than inflammation from drugs he put me on by IV to which I am allergic for an infection I did not have. Amazing how your world can turn upside down from someone else's screw up!! I try really hard to believe that the actions were not malicious, but lying in bed after the first leg surgery (I required two), I listened to ICU doctors and surgeons complain outside my ICU room door that another surgery had to happen (for revenue's sake?), or I was not able to stay in the ICU room!! Scary and unbelievable, and my husband and I filed a formal complaint at that time, but I ended up with a second clot in my calf from a poorly placed IVC filter along with damaged lymph nodes causing permanent lymphedema in right leg and the roller coaster began. Spent a total of 22 days in ICU, 18 days in rehab, and a wound vac on my leg for another two months at home. Anyway, the point being even though we are all so alike, we are all also so different. We handle things differently, heal differently, react differently, and live and die differently. It took me almost 18 months to be able to even go outside of my house, living in fear of what someone would do to me without my permission. Then I graduated to drive-thru lanes, bank, food, pharmacies, and even my groceries. My appointments with doctors, filled with such trepidation, were dramatic excursions full of fear and tears, shaking and crying, unable to even let a doctor or nurse touch me. My PCP is wonderful and handled me with kid gloves, helping me to come to terms with something over which I had no control. My fear ruled my life for far too long, and I found this site and became a voyeur, reading everything but never posting, until I realized the benefits of being able to have contact with like-minded people. Fear and depression are debilitating. Everyone here is aware and understanding of just what you are feeling now and will feel in the future. How to deal with these feelings is personal, and some people have a great outlook while others suffer longer for various reasons. You appear to have the best attitude because you are determined to take back your life. That is the mitigating factor in recovery.

I don't do things like pretty much anyone else, so my advice is kinda limited. I use a one-piece Coloplast SenSura Mio and only a barrier wipe. I don't need any other supplies, not really sure why, lucky I guess? I also shower naked every day and change my appliance, which many people cannot do because of skin irritation. Everyone that I have heard from on this site has been helpful, understanding, and quite often inspiring, not to mention very willing to offer any advice/experiences that they can. If you are having leakage problems, every ostomy supplier will send you free samples of supplies, so I suggest you try them all to find what works for you. As far as the infection, try to eat good amounts of protein as it is essential for healing. I hope you can find your way to feeling better about your situation, and I hope you know that you can always vent here.

Peace,

Nancy

Emra, the early days can be quite frustrating as we all know. Everybody on this site has been through what you are experiencing right now. Have faith, you will master it just as we all have. I would suggest we address each problem you are having one at a time. The leaks will go away as you find exactly which products work for your skin/body type. Your incision area will "flatten" and smooth out as it heals, there is always a little swelling for awhile. Perhaps you can tell us what products you are using now? Do you use a convex flange? Do you wear a belt with it? Are you prepping the area correctly with a soap that doesn't contain oils/perfumes? You may want to search this forum for "leaks" because there are hundreds of posts on that topic. We are all here to help you. God bless you through these tough times, it will get better!

I agree with MMSH... We have all been there and I too think it's a good idea to deal with one issue at a time... It can be overwhelming in the beginning but one solution to one problem will inspire you to tackle the other ones... You can and will learn to navigate through this new life! Blessings to you Emra :)

hHello Emra. I agree with everything people have said above and I hope you get many more replies. In my own case,  I never wanted to get my life back as it was so awful before. What I wanted was an opportuntiy for a new and different life. Well! this is certainly diferent and , as it turns out it is generally for the better. The first few months take a lot of getting used to, probably because they are the worst and at a time when we have least experience of how to cope with it. However, with patience, perceverance and a positive attitude we come out of the other end hopefully with  a life that's better than it was before. That's my experience and I hope it helps.

Best wishes

Bill 

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Hi Emra,

As a transplanted New Yorker now living in Texas, it was nice to find you. Don't ask me how I got here 'cause I'm still trying to figure that out. Must have taken a wrong turn someplace, LOL. I'm not big on these types of sites, but I came across it in my email. I know they offer support to many. I find it difficult reading about my problem over and over through other people's experiences. Sometimes you feel bad and wonder why so many others seem like they don't get it. You stay strong. I just want you to know I understand it's not easy, but you hang in there because if I can make it, you can. I'm finding that it takes time to deal with the situation.

IAE

Hi, Emra--

Sorry you are going through such a hard time. I also had an emergency colostomy in April, the end of April, and was in the hospital for 11 days. The first month home was nightmarish. I can totally understand your description. But the nightmare has receded for me. Of course, I don't have an infection, which is adding to your struggle.

Showering twice a day must be quite challenging. Did the doctor insist on an actual shower or can you use a cleansing product? If so, it might be easier to sit and clean and bandage, remembering to clean off all traces of soap or oils before putting on your new bag. I slipped up and used Wet Ones for a few days. The bag started coming off again. Oh, no! Then I re-read the written material I'd received from the ostomy nurses (ConvaTec literature) and saw that they specifically mentioned not using any product like Handy Wipes. Oh, well, lesson learned.

If you are struggling with depression, you may want to ask your primary-care physician to prescribe an antidepressant. What you are experiencing is called situational depression. Which is just as it sounds, depression from the situation you're going through. Therapy can also help, but you've got your hands full with taking care of yourself.

Hang in there. I've come out of the nightmare period and so will you.

Cheers,

Marian

Hi Erma, welcome to MAO! I am glad that you found us. I read your post and wanted to answer your question. It took me about 1 year to come to really terms with my surgery. I returned to work 7 weeks post-op and was able to get back to some type of daily routine rather quickly. Saying that, when I returned home from my work day, I would become very sad and depressed about my situation. I have a permanent ileostomy due to severe UC. I traveled through all of the stages of grief... the loss of my colon, health, and gaining an ostomy. I knew, if I could get through the first year, my perspective would improve. Major life events usually take me about one year to heal. I believe it is the ability to look back one year and see the progress. In the beginning, I really worked the one day at a time program. One day victories and successes gave me the ability to take on "one more day". At first, all I wanted to do was to die and get out of this situation. Let me be crystal clear, not suicide, but to close my eyes and be rid of the deep sadness of loss. Nothing made sense because the year before I was healthy, no UC. Those days were very difficult but slowly my perspective improved because of this site, conferences, and support groups. I worked at getting happy again and being me. I read about so many people living great lives that I wanted my life back and I was ready to face the world with my new normal. For some, it takes time, for others, more time, and some people just accept and continue. Hang in there and keep posting your questions and reading these excellent posts of inspiration and connection. I believe that they will provide strength and hope for you as they did for me. Take care. LH

Initially....who knew the struggle, the pain, the blockages, the frightening reality of no strength and no muscle to hold up this shell. More so, what my husband was going through. Still going to both jobs, taking care of the house, the pets, the bills, the errands, the upkeep, and finding time to bring me encouragement every day. The more I look back, the more amazed I am at the things God can see us through. He kept my husband strong so I would recover, and to this day I know not why. Who am I? Just one small insignificant individual in a large world. My body has healed but my heart will never be the same.

Find your strength in Jesus!

You have all my sympathy. I had my ileostomy 10 weeks ago and every day I wonder if I'm in a bad dream and will soon wake up, but of course it's not. My surgery went well although they did warn my son I may not make it - I often wish I hadn't. My stoma is sitting on top of a hernia the size of half a grapefruit, so sticking the bag to my skin is difficult and I've recently had 3 separate leaks. My Stoma nurse is an angel and is doing everything she can to find the most suitable bag for me - I've had many trials and errors. I find the emotional side of things most difficult to come to terms with - my original plans for the future are on hold, but reading through other posts it seems there is life after ileostomy!

I hope your wound soon heals and life will improve for you. I'm not much help, but I'm always here.

Hi, my name is Marsha, and I had my ileostomy surgery done more than 50 years ago when I was only 15. I'm 67 now... and I know how those first months dragged by... the healing, dealing with ancient products... and feeling out of control of my own body and life...

But I'm here to tell you, to assure you... that life does get better. You will get over the anxiety and fear (of pain, the unknown). In a way, it's like having a new baby... with no baby experience. You don't know if what you're doing is right or wrong. Most of what doctors advise... is not personal experience. And if I've learned anything, what works for one person doesn't always work for another.

Back in my first days, we didn't have ostomy therapists... and supplies were limited. If you have questions, find an ostomy therapist/wound care nurse you trust...

There are also a myriad of companies out there that will send you sample supplies.

After you've healed some, you might want to consider irrigation... look online (Google/YouTube) or ask for advice on the site. People who irrigate every day or two generally do not have leaks in between.

If you're not already using an open-ended pouch, you might want to consider that temporarily. That way, you can empty waste (as people with ileostomies do) several times a day. Depending on how much of your colon was removed, it will determine the density of your output.

Some people find the waste is often too dense to pass through the stoma without pushing off the wafer. If that's happening, then irrigation is for you... when you're healed.

Some people (like me) shower with my pouch on. I have sensitive skin, and the oils in soap prevent the flange/pouch from sticking. I never use soap under the flange... or around the stoma. I just use hot water and cold water, and then a skin prep.

But there are others who shower and even bathe without the wafer on. Again... personal preference.

This is a time for you to relax, get to know the new you... and your new body (part). Pamper yourself. If one thing doesn't work, try another. Except for cleanliness... everything else is "hit or miss". Try not to measure success by "time". One day, I promise, you'll look back and realize how far you've come. Be kind to yourself and find someone you trust to talk to... someone who understands... You might want to "name your stoma". I never thought of doing it... but my friend named hers George... Lady Hope has Stanley... and another calls herself "Rosie's mom". For me, my stoma is my badge of survival and I'm forever grateful for the full and active life I've been able to have because of it...

Best of luck to you...

Marsha

Emra

My colostomy was done in March, so I am just a little ahead of you, and struggled mightily, just as you seem to be. Unfortunately for me, I got out of the hospital the Monday after Easter, which was a school vacation where a ton of nurses apparently take the week off.

My WOCN was out of town, and the home care nurses were short-staffed, so nobody showed up to get me going for three days. I had not just leaks, but full-scale blow-outs every day starting the first night. I was depressed as well, but had already started on Zoloft while in the hospital.

I was able to get back to work after a week at home, which is apparently lightning-fast from what I have heard, and I credit a small list of factors. First is great nurses. I had a great WOCN in the hospital, and the home-care agency had one on staff as well. Constant training on the equipment was vital in gaining the confidence to get out in public. I still have an occasional leak, even a blow-out once in a while, but now that I know the signs and what to do, they aren't nearly as stressful. At this point, it boils down to cleaning up, changing up the set-up, and getting on with the day.

The second thing that helped was the kindness of friends and co-workers. I live alone and work for a hotel, so I got a room for my recovery in order to expand my support network. I can't tell you how great it was to have people stop by and visit. Only a couple people knew about the ostomy, but everyone knew how sick I was when I went in, and they were all concerned. And having people stop by kept my spirits from staying low. An ostomy is a lonely proposition at the beginning, but basic human interaction and kindness helped tremendously.

Despite the fact that I was a lapsed Catholic (I was extremely disappointed in the sex abuse scandal and response), I had a contact at the local Catholic church who was a regular visitor at work through his outreach program. He and his wife visited and prayed with me, brought food when I couldn't get out to go shopping, and took me to church when I felt good enough to get out. They had the pastor call and visit as well, which I found amazing. It may sound crazy, but prayer provided an almost instant boost in my attitude every time.

And as in most things, time heals all wounds. With an ostomy, it was all about confidence, and that takes practice. I hope this was helpful, and I wish you all the best in your recovery. Feel free to contact me if you need to talk.

Ed

I had a colostomy 1 1/2 years ago. I understand the first month(s) are rough. Mine had been planned for about 6 months, so I had extra time to prepare myself. I can't imagine it being a "surprise" to you. Because of that, you need to give yourself extra time to heal, mentally and physically. A surgery like that really takes a toll on you, as you well know. Frustration is so common, I think we all face it after an ostomy surgery.

I can reassure you though, that the infection, although a real pain in the butt now, will heal itself. I had one too, with all the packing and stuff. Really frustrating, isn't it? I promise it will heal in time, making things so much easier.

As far as the leaking goes, very common at first until you are able to find the right pouching system for you. Are you working with an ostomy nurse? If not, see if you can find one at a neighboring hospital. They can be enormously helpful.

Give yourself a break and take a deep breath. It will get better. It will get better. It will get better. It took me longer to deal mentally than physically. I still have a rare day when I want to rip off the pouch and just say "screw it, I quit". But, that's not an option. Instead, try to find some support, like on here or an in-person support group if there's one in your area.

Write whenever you want. Vent. Ask questions. Whatever you need.

Welcome aboard, I call myself a fairly newbie (colostomy 22 months ago). Only in the past 6-7 months have I found the right system for me. I cannot stress enough to keep trying different products until you hit on something that works better. Note my screen name, I cried daily for months! It was so hard to adjust, felt unattractive and sad. Frustrated with my "appliance", often said it may as well have been a toaster for all the good it did me.

Learned a lot here though, thank goodness for the support and information! It will get better, in its own time, every few weeks I discover something new that makes my life with Il Disgusto a little easier.

Take today for example, got up, cleaned up, inspected and thought I might have a teeny tiny possible breach. Well I used the toilet, washed up, got dressed and went to work. Couple of hours later "what's that smell?" OH NO, of course I'm wearing white sweatpants! I grab my emergency kit and run into restroom. Ok, not too bad, this can be fixed, wth? I've grabbed the wrong cosmetic bag, have to reassemble everything fortified with tissue and run back to my desk. A few months ago, the wafer would have cut loose with such velocity there would have been a humiliating catastrophe. Not that I wouldn't have dared to wear white (especially after what happened in Bermuda, but that's another story)!!!! But today I was able to repair and contain and survive another 5 hrs til end of my shift. BTW, a coworker was asking around about a hand mirror found in the restroom (in the stall where I left it). She said they were wondering why it was sitting so low (on the handrail), "were you looking down there?" "Uh yep." and left it at that. Be prepared!! Some day you will even see the humor in some of the situations we find ourselves in.

Some days are better than others, take it one day at a time, keep your chin up, survive!

Thank you all...your words of encouragement helped me more than you can imagine. I am scheduled for my pre-reversal colonoscopy week after next....the incisional wound is closing finally....it's been a long road. As sad and down as I was that day in June when I initially posted, something in the universe guided me to you folks. Your responses and the other stories I read here have been incredibly enlightening and supportive. I cannot thank you enough.

We will see what happens after the colonoscopy - I am trying to regain my stamina and strength - still not back to where I was preoperatively. I want to go into the reversal surgery as healthy as I can be - physically, emotionally and, yes, spiritually too. I am not what one would consider to be a very religious person, but something pulled me through - it wasn't my time to go. That has been a lot to deal with...but...acceptance of my situation has been the first key to getting on with my life. I no longer wake up and think "was that a nightmare" because it isn't a nightmare it just is what it is. If I cannot have a reversal, I am fully prepared to deal with that too. Actually, part of me is pulling to not have the reversal at all...I guess that is just normal preoperative jitters. I am finally feeling better and to now go under the knife again...well I frequently think "is it really worth it? Things are going OK now...why put yourself through that again?"

I am thankful for many things...one of which is finding this spot to share how I really feel. I know that many of you out there are thinking "I know how that feels."

Thank you again. I will be back with further updates - there might be others out there who are now "walking the walk" too...maybe I can help them as you have all helped me.

Hi Emra,

Such a nice post. We will be looking forward to your updates. I'm sure you have already helped others who have read what you have posted already. But, yes keep coming back whenever you want, there always seems to be new folks who will benefit from you and your experiences.

Hello Emra,

Thanks for coming back to us and sharing how you have been feeling on your journey. It is so important to capture these thoughts as they happen because later down the line our perspective may change. Sometimes slightly , sometimes drastically but as different things happen and we gain more knowledge and insight, we are able to see things differently. Reading your posts gives us that feeling of being in the here and now rather than coming from the depths of historical time and experience. This keeps the subject alive and relevant for those who are going through or have been through similar psychological, emotional and sometimes physical experiences. I've enjoyed your posts and hope that you continue writing to keep us informed

Best wishes

Bill