Advice on Living with a Stoma: Support, Resources, and Encouragement Needed

Hi-

New to this situation and found this site.

I have bowel issues from a spinal cord injury 25 years ago.

I have been trying intermediate measures for control, but my colorectal surgeon had a heart-to-heart talk with me today about acceptance of one's personal issues - meaning it's probably time for me to get the bag and move on with my life. (Move past the accidents - fear - depression...)

I'm hoping for advice - input for:

- local support group (Portland, OR)

- a comprehensive guide to everything you need to know about life with a stoma (a book, website, etc)

- Personal testimonials about how the bag has not inhibited your active lifestyle

- A list of preferred manufacturers - products to start with so that I can become familiar with the system before tweaking to my individual needs

- A general "everything will be o.k." message - things that helped you to accept your new situation (speaking about permanent stoma)

Thanks in advance - It's really great seeing you all share in this forum.

Hello David. I had my colostomy because of chronic incontinence and a rectal prolaps. In retrospect, I think I should have opted for the surgery when it was first suggested , some 15 years earlier. There are some  adjustments to be made after the operation, mostly in terms of 'attitude' towards the new situation but I can tell you that my life is immeasurably better now thann it was before.

As for the information you ask for, it would take too long for me to go through all the things on your list in one post so I would draw your atention to the 'CONTENT' box on the left of the screen. if you go down to 'collections', you will find all sorts of information and comments covering almost everything that you want to know.

I hope that helps.

Best wishes

Bill

Hi David, I'm not sure what kind of ostomy you might get, but I've had an ileostomy for 30 years. And it hasn't held me back at all. Once I was healed from the surgery and got my strength back, I was able to do anything I wanted except lift anything heavy due to a chance of getting a hernia. I hunt, ride my 4-wheeler, travel by air and car, and go swimming. Good luck with your surgery.

Hi, David, welcome aboard! I ended up with a colostomy due to a perforated colon and peritonitis from progressive complications from my cancer treatments a few years before. (Cancer gone, woo hoo!) I was a basket case the night before my surgery, so I understand what you are going through. I figured, how could I possibly manage with all the changes it was going to make in my life? I had already lost so much from the cancer and treatments and subsequent complications - couldn't exercise, couldn't deal with the constant pain, lost both the businesses I had, couldn't work anywhere else. I was a basket case, and this looked to be the icing on the cake to totally destroy what was left of my life!

Not so. Turns out, most of the pain was from inflammation of the nerves in my back and legs, and it almost magically disappeared overnight after the mega-antibiotic treatment for the peritonitis. Suddenly, I had my whole life back! I have an entire shoe box of heavy-duty controlled-substance medication that I was unnecessarily on for the previous 2 years, that I don't need any more. I can walk, bike, exercise, whatever, with no problems now. Next month, my husband and I are going to the water park - no problem! I'm going to my niece's wedding 2 hours away with no worries! Life is GOOD again!

Are there issues and learning curves? Of course! But it's nothing compared to what I had been going through.

Your ostomy nurse in the hospital will be your new best friend for a while as you are recovering from surgery and getting used to your appliance. No question is too silly or too "out there" - she's heard it all and probably has run into it with one of her patients. I know mine did. Before the surgery, mine gave me a stack of pamphlets and magazines giving me a LOT of information about what I would be experiencing and just general education. Yours should, too, along with a list of local and mail-order places to get your supplies. Also talk to your insurance company - my insurance actually had a case representative who checked in on me every week or two by phone for the first 6-8 weeks to make sure I was doing OK and to guide me through the whole insurance/medical supply/what's covered issues.

You will also get a whole box full of samples of different kinds of appliances, pouches, powders, pastes, sprays, etc. for you to try out and figure which ones will work best for you. The top brands are probably Hollister and Coloplast, but there's others out there, and many of them will send you samples if you request them.

And don't forget, we here in the ostomy community are always here to help with advice, humor, and whatever it takes to help you get on with the important business of living your life - don't let the ostomy slow you down!

Hi.

I really do agree with most of what has already been written. The one thing I want to add is that it would be worth it to look around and find an ostomy nurse. My ostomy nurse has been more than helpful when it comes to finding the right products to use and continued support. I had my colostomy surgery 1 1/2 years ago and still see her whenever I have questions or need some tweaking with my appliance.

The other part to do before surgery is to ask questions. Ask questions here, ask nurses, doctors. Ask anything you are curious or concerned about. I found that asking more questions and having more knowledge helped me to feel less anxious.

You will get through this. I know the idea of an ostomy can be extremely overwhelming...there seems like an endless amount of things to learn! While it's good to get info before surgery, don't worry if you don't know everything.

You'll likely find that the physical part of getting used to an ostomy tends to be easier than the mental/emotional. It's not really that bad at all...in fact, most people I have talked to said getting the ostomy improved their quality of life significantly. I know it took me a while to wrap my head around the whole thing, but quickly realized that my life is better without having to worry about possible accidents, embarrassment, knowing where every bathroom is. Before surgery, my life revolved around the bathroom. Post surgery, my life revolves around living life to the fullest.

Know that the toughest part will be the first year. The first month even. You will have frustrations, you may have trouble finding the right products for you. It will take a little getting used to. But things will get better. A lot better.

Lastly, I have found that support groups (whether online or in person) have been really helpful. Just knowing that I'm not alone makes me feel better. And having people to ask questions and share trials and tribulations with is comforting.

Write again with any questions or worries or whatever.

Sunny1978

Huillo David -

I had ulcerative colitis, but avoided surgery for about 12 years, instead having huge doses of prednisone, mesalamine, Humira injections, Remicade infusions, blood transfusions, and was sick as a dog through most of that time. Then finally I had explosive diarrhea in the middle of a department store on a Saturday morning, and I said OK - that's enough. I called the gastro doc who set up my surgery a few days later, and I have never looked back.

Yes, there are accidents; you deal with them. They lessen in time. Yes, there are blockages; you learn how to deal with them. Yes, there are times when your bag blows up with gas; you "burp" it. I think the most important thing is your attitude. Do NOT be embarrassed by your bag. It's a lot more embarrassing to have an accident in Macy's.

Support groups are great - Portland has one, according to the Phoenix Magazine - call Caroline Uphill - 503-644-5331. Also, you should subscribe to the Phoenix Magazine. Lots of good information there.

Good luck!

Sandi

David,

Welcome to the site! I know you'll find plenty of information and support here. I found this so you can search for a local support group there. http://www.ostomy.org/Find_a_Support_Group.html

You'll see a link in the center of the page to search for groups in the US. I saw 4 for or near the Portland area although personally I think you will have better support here. I apologize in advance if this seems long-winded but here it goes.

I was diagnosed with Crohn's disease at the age of 14 and tried to manage it with medication. I was constantly in pain from stomach cramps and rectal inflammation. I would have some good days but most days I was running to the bathroom every hour. At age 23, the medication didn't seem to be helping and I had 2 major constrictions in my large intestine so it was suggested that I have ileostomy surgery. I was scared shitless. The doctor sent me home with some pamphlets and a video tape. I remember my best friend was the first person I told and I'll never forget what he said. I was like, "I have to get a bag". His exact words were, "Well.....that's a bitch." I don't know if it was what he said or how he said it but I laughed so hard I almost pissed myself. Making light of the situation helped me out.

I don't want to scare you with the details of surgery because I could write a book so I'll do as quick a recap as I can. I went in for surgery, my ET nurse marked a spot on my abdomen for the location of the stoma, told my family and friends I'll be right back and went into the operating room. I was out of it for a couple of days. But when I woke up, I had a tube in my nose going down my throat, a catheter in my johnson, IV's, etc, etc and of course, a bag on my gut. At the time, my stoma was as big as a plum and it was weird at first. My ET nurse came in and showed me how to drain the bag (as I use a 1-piece system) and they got me up and walking as soon as possible.

Here's what I hated. I wasn't allowed to eat anything or shower for the 1st week. Just ice chips and giving myself a sponge bath. But the nurses would come in and flush my stomach with the tube in my nose with something that smelled and looked like Pepto Bismol so nothing was really being digested. It turns out, they did 4 resections of my small intestine where the Crohn's was really bad and removed most of my large intestine. The 2nd week, they took the tube out of my nose and I was allowed to eat clear liquids. To this day, I hate jello. I was allowed to go home for a few days, incredibly weak on a soft surgical diet. 3 days out of the hospital, I got a fever because of an abscess and had to go back to the hospital for 2 more weeks. To me, it was like being in prison. I didn't think I was ever going to get out. But eventually I did. I was off work for 8 weeks to completely recover. I'd gone into the hospital weighing 140 lbs and came out weighing 118 lbs. I was scrawny. Luckily, Thanksgiving was right around the corner.

As an ileostomate, I learned that I had to chew my food VERY well, learned how to manage certain foods that could cause a blockage and of course, how to manage my ostomy as well as my sanity. But, I was pain-free. I could eat anything I wanted without having to worry about how it would affect my stomach. I didn't have to take any medications anymore. I didn't have the painful cramping, nor did I have the urgency or urge to run to the bathroom. I felt so free!! My confidence when I came back to work was SO much better because I didn't have to worry about shitting myself or dealing with pain!! I felt like a new person and had a totally different outlook on life where as before, I didn't want to go out and do anything because of my Crohn's.

Now, my career has me traveling all over the globe, I exercise daily, I ride my motorcycle, go out and do all the things I couldn't do or was afraid of doing before my surgery. It was a Godsend. My ostomy is a part of me and I'm a better person and I'm alive because of it!

I'm not gonna blow sunshine up your ass but I know my experience was positive for me. But it's different for everyone. I am lucky to have great support from my family, friends and everyone here at MAO, that my illness wasn't NEARLY as bad as it could have been. That I have a positive outlook on life. My advice is to research thoroughly, contact your insurance well in advance to make sure the surgery will be covered, and most of all, BE CONFIDENT!

We are all here to support you David. Hope this helps.

Bain

Your life will be so much better. I'm in the same situation. Life will only get easier for you. It's better than sitting in poop. If you don't like it, your doctor can always fix it back.

Thank you all-

Your kindness and willingness to help is amazing to me.

After I posted here, I watched many hours of YouTube last night... teenagers with incredibly positive attitudes describing situations / demonstrating techniques baring it all to the world without hiding behind anything. The internet is truly an amazing resource and I'm feeling so much better.

What about hernias? Can you really no longer do any heavy lifting? Will this mean that I can't climb mountains and ski down them anymore? Will I have problems with strenuous exercise?

What about sweating profusely during exercise? Will I be constantly battling the seal between skin and bag and having accidents that way as well?

As I'm technically a paraplegic (foot drop, leg braces, limited lower leg function), the gains I have made in my activity levels over the past 10 years are extremely important to me and my self-image. I have developed techniques / improved to the point that I can ski and bike race with any "normal" person my age - and I love that! I'd say my activities that I can do are even more important to me than the fear of finding a partner someday that will accept "the bag", even though that scares the hell out of me as well...

Hello David. Thanks for your posts as they are interesting and enlightening. The main thing about all the activities you mention is that having surgery of any kind weakens the muscles and makes them prone to hernias during the initial post operation period (and sometimes beyond) abdominal muscles are no different in this respect. However, on the bright side, If you are patient and adhere to a reasonable regime of abstinence during the early phases of post op recovery, there should be no reason why you should not gradually work your way back to your normal levels of activity. Think of it this way, we all have 'problems' with strenous activity in one way or another. climbing mountains and skiing are both activities that I once enjoyed taking part in but no longer do - partly because I'm now too old, but partly due to the accidents and injuries sustained whilst doing those activities. As for sweating, I have always suffered with this problem and my wafers do come off from time to time but that issue can be lessened with some of the suggestions that people have made in other posts.

reading about you perseverance and achievements so far, I cannot see any reason why you will not quickly adjust to having a stoma and after the convalscent period simply get on with your life as you were before.

Best wishes

Bill  

Welcome, David!

I woke up after ovarian cancer surgery to a colostomy bag. Surprise! It's fortunate that you get a head's up.

Yes, sweating can affect the seal, but you can foresee sweaty situations and prepare for them. I think this is harder for guys as they don't grow up having periods. And as a mom, I've carried around tissues and wet wipes and bottles of water and you name it for years, so now I just have them handy for me instead of for the kids!

It's a learning and growing curve, so it gets better. The curve goes up. And it's an easier slope than a mountain so you'll do really well at this!

Hi Dave, I wanted to welcome you to MAO. I joined this group 3 1/2 years ago when I was facing ileostomy surgery because of severe UC. I was also very frightened as I did not know anyone with an ostomy. I also knew that if I did not agree to the surgery, I was most likely going to die. Things have changed some since surgery (I don't sleep on my belly any longer) but nothing too drastic. Funny, the foods that are suggested either to avoid or eat in smaller quantities, I never really liked in the first place. I continue to work full time, vacation when I can, and live life. It did take me some time...about 2 years to really recuperate and gather my strength back. UC is an autoimmune, so today instead of the bowel issues, I experience inflammation throughout my body. I traded one PIA condition for another. I do my best to live each day to the fullest and I intend on living the best I can until I die. As for the products, try lots of different ones and find the one that works the best for you and your body. You mentioned sweating and wafer sealing....the summer months here in PA are pretty hot. This summer, in fact, we have been having temps over 90 degrees. I find that I itch underneath my wafer. To help with the problem, I found a different skin barrier wipe that caused less irritation. This process is trial and error. Keep an open mind and be gentle on yourself. It takes time to learn everything and after 3 1/2 years, I am still learning new tricks of the trade. Finally, you spoke about gas build-up and odor. I use an ostomy deodorant the majority of the time as well as a pouch with a filter. Yes, the filter clogs usually after one day of use but it helps with the pouch ballooning. There are many different brands of ostomy deodorant. I like M9, Safe and Simple, and Na'Scent. M9 and Safe and Simple are blue (tidy bowl in my pouch) and Na'scent is clear. For me, they are helpful. Take care and keep posting your questions. Everyone here is so helpful and a true blessing. LadyHope

David...you can and will adjust to the bag. It's obviously different but it's life-giving...once you can accept that it's giving you something...not taking away...that will help. For me, I was really having no symptoms...problems...etc. and just went from normal to "life is about to be very different" (!)...but for some people, they have struggled so much that by the time they get the colostomy, they are so grateful and life is much better! The site is full of supportive people who have experienced so much...I'm glad you're here asking for help and support...that tells me that you will do great! Blessings...CH :)

Hi David,

Welcome to MAO! I don't think there is really anything I can add, everyone has said it so well. Your life if given proper care and following the doctors advice will be by far better than it is now, patience and postitve attitude are two of the keys to get you where you need to be.