Embracing the Present: Finding Gratitude in Pain-Free Moments

Hi LadyHope, thanks for sharing that. A WOCN with a stoma must be a real expert. She would be great at helping people choose stoma placement. Mine's in a lousy place, and you mentioned that lady who had one right in her belly button. A lot of people really struggle based on placement, because the professionals don't know what it's like to really live with one. I agree, we'll just have to keep hoping for lab-grown colons, gene therapy, and the other things on the horizon. Just gotta get through today, and maybe tomorrow will be better. JP

Yes, I agree with you JP...one day at a time. When I look too far ahead, I get overwhelmed with thinking. Years ago my future looked differently...all in the perception. I was fortunate to be able to meet with an ostomy nurse to determine placement of my stoma. The surgeon said he would do his best to place it at my marked spot. He pretty much did. Location, location, location....for both ostomies and real estate...LOL. I have read that some stomas need to be replaced for a variety of reasons. I don't know who to ask, but is new placement surgery the same as the original surgery?

How are you feeling JP? Any relief from the ongoing cramping and pain? I hope so. I wanted to pass along a new juice drink that I found in the supermarket. It is called coconut juice, not water, and it is delicious....very rich. The juice is pressed coconut, so it has very small bits and pieces and it is organic. Apparently coconut has some health benefits, but I can't eat it today due to my ostomy, so this drink is my replacement. It is also non-dairy. Take care and have a nice week everyone. LH

Hi LH, sorry about the delay in responding, but the site didn't notify me about your post. The coconut juice sounds like a good alternative to milk, especially for dairy-intolerant ostomates. People might also enjoy almond milk or rice milk, which are both low-fiber and non-dairy. All good options for vegetarians or people with motility issues.

My stoma is the same as ever. A liquid diet and two daily irrigations keep the discomfort manageable. It's been like this for two years, and Mayo Clinic says there are no surgical options, so this is probably it from now on. I'm not feeling great, so I'll probably sleep through the evening, maybe fast for a couple of days.

Take care, and hope you have a good weekend.

Hi JP,

It's Marsha again....and I think I'm destined to make you "my project".

You're so young, and you have your whole life ahead of you. Sure, it's different with an ostomy, but for me, I'd sooner have this than all the pain, 20-30 bloody bathroom trips a day, missing out on school, and social life, because I couldn't be away from the bathroom for long. Since surgery.....I've lived as "normal" a life as anyone could. I went to camp, changed my appliance in a stall, without running water, in the dark, with bees buzzing around. I've skied (wasn't good at it), went ice skating, flopped on my belly countless times (not good at that), swam in the ocean, pools, and even the Dead Sea...which was a fiasco. My appliance popped off, and I was a filthy mess. But I got through it all. At 15, I had a determined optimistic attitude, but you should have seen the awful supplies at the time. The wafers were made of rubber or plastic and were reusable. The pouches were rubber, and were also reusable. They did "smell", so I needed to use all kinds of deodorants. I was lucky enough to know many other teens and young adults through the NY Ostomy Association. That was a big help in my developing confidence and a positive attitude. Even at my "ripe old age".... I travel, meet people, snorkel (on the Great Barrier Reef) and won't give up on living a full and interesting life for something that's just different plumbing. If you haven't "had sex" for 10 years, then you're not putting yourself out there, meeting people and being the best you possible. Start with that, and see if it makes a difference. You have a "disability" (and I even hate to call it that) that can't be seen, and nobody has to know about it, until you want to tell. So go out, be social, meet people, give women a chance.....With or without a stoma, one needs to kiss a lot of frogs (or frogetts) before finding that prince or princess. Many people are here on this site to support you in your efforts....but you are the one who needs to step out of your comfort zone, to find what you really want. We all wish that "this hadn't happened to us", and while it may make connecting with others more of a challenge....it's doable. I really do want to hear back from you, and find out you've done something positive... Buy some new clothes, go to a singles event....Make connections on dating websites. Do things you're interested in doing.....and look around for women who are single. I love hanging out in bookstores and libraries.... Pick your interests! I'm thinking of starting to hang out at the local marinas, because I'd love to meet someone who loves the water (sailing) as much as I do.

Best of luck to you.

Marsha

Hi Marsha, thanks for sharing your experience. Must've been rough with the low-quality rubber bags in the 60's. And then you think about the people back in the 20's hand-washing their leather bags, which were anchored to their belt with an iron ring. Ye old ostomy.

Snorkeling over the Great Barrier Reef sounds like a blast. Maybe you could tell us about it sometime, like you did in that fantastic Malta post. Not to blow smoke, but you're a natural travel writer.

I really do smell like crap 100% of the time. It's unmistakable. Family + friends abandoned me 7 years ago, and every time I go out in public I encounter a wave of hostility. I actually ran into an old friend who sort of glared and said, 'you smell.' And I only go out in public after eating nothing, irrigating 2 hours, showering, and new wafer/bag. I have spent on WOCNs + GI docs, no answers. So it's completely impossible to date, let alone go to the hardware store without people glaring and touching their noses.

Hi Jpeters, how are things going? I just read the two previous posts, Marsha's and yours. I remember reading that you can't tolerate solid foods because of the awful abdominal pain. I was curious, are you able to tolerate yogurt, yogurt smoothies or frozen drinks? I eat yogurt when my stomach is upset. It seems to help. Also, yogurt, cranberry juice, tomato juice, and apple juice are supposed to help with odor. Parsley is another good odor controller but it would need to be eaten in large quantities. I was thinking maybe pureed with some salt or blended with another juice. Regarding the appliances of year gone by, I viewed photos of them online. Wow... we have come a long way from the early days. I also read about one person who had surgery in the 30s or 40s and was sent home with nothing... no appliances. Ostomy care consisted of what a person had at home such as towels and wraps in order to keep things in place. One person created a metal cup to catch the effluent. Those post-op patients must have been so frustrated with the system as their quality of life was challenged every single day. They were so brave and creative.

Are you still going to attend the UOAA conference in Sept? It should be a good place to find the answers that you have been seeking over the last couple years. With all of those ostomy experts in one spot, my hope is that someone is familiar and can help you with the terrible stomach pain and odor. Also, how is work going? A few weeks ago, you and your team were celebrating a potential new client and product design. Good luck! LH

Wow, home from surgery with no appliance. That must've been incredibly challenging. You have to relearn to do absolutely everything, with no help from anyone.

Thanks for the nutritional suggestions. I can't digest yogurt, but do live on a diet of homemade juice, including cranberry, apple, and parsley. It drastically reduces stool odor, so I walk around smelling like low-odor stool. It's the difference between people sniffing and glaring, and people coughing and looking like they want to murder me. There's a phenomenon described in psychology texts where some people get violently angry when someone smells. We may have evolved that way to drive out sick members of the group before they can spread disease.

I'm planning to attend the Conference, barring a change in our work schedule. Thank you for asking about our project. It's going very well, and we're on track to ship the first units in 6 weeks. How's work going for you? Is your ostomy cooperating?

Yes, so far Stanley is cooperating as much as a stoma can....LOL. Work has been busy for me in addition. Thanks for asking. I am excited about my book too. It launched last week and is now available on the Tate Publishing site as well as Amazon and Barnes and Noble. I am very excited and hope that this short read helps those traveling a similar path. The book is geared toward the newbie and/or someone facing surgery although all of us can relate to the experience. Looking back three years ago, pre-surgery, I felt so alone and loathed that feeling. I would Google information about surgery, living with a stoma, famous people with stomas, how to dress, what to eat....you get the picture. I wish that I had this book as my resource. Anyway, I will see how it goes.

I am sorry that you can't eat yogurt. It is not my fave but I do eat it especially when I am taking antibiotics. Your work project sounds like it is on track. Wow... shipping in 6 weeks is terrific! Congratulations.

I am looking forward to the conference and seeing everyone. I heard that over 400 people are attending so far and the number is growing. It was fun and educational two years ago when my husband and I attended. It should be a good time once again. I am also looking forward to possibly touring around the city. I hope the weather cooperates. I have been there once, but it was a work-related trip - not much free time. Take care. Have a nice week. LH

Congratulations on becoming a published author! That's a nice accomplishment, and it should help people facing an uncertain surgery. It should also be helpful to the people who are less ill and wondering whether to get the surgery in the first place. What's your book called? I'd like to check it out.

Yogurt is a no-go because it's a stool thickener, like rice and applesauce. They're great for an ileo with the runs, but really bad for a colo with poor motility.

It'll be interesting to see who attends the conference, what the age range is, and if anyone is coming from a foreign country. Are you driving out from PA or flying?

Hi Jpeters, thank you so much for the email. Yes, I am very excited about my little book. My hope is that I am able to help others walking a similar path. My book is called Stanley and Me Make Three. You can view it on Amazon, Barnes and Noble, and the Tate Publishing website. It is a short read...basically my journey to gaining an ostomy. The read is about 30 minutes at most. My thought was... make the story a short, inspiring easy read. I also included some ostomy contact information including the UOAA, The Phoenix magazine, and Meet an Ostomate website.

Yes, my husband and I are driving to St. Louis. This should be an interesting 13-hour plus drive. We decided to drive because I have a booth at the conference and did not want to check my books at the airport. The "what ifs" kicked in and I envisioned my box of books sitting somewhere in an airport terminal (not St. Louis) lost. So we are driving...road trip...LOL.

I can't remember if anyone from overseas attended last time, but I know several people were from Canada. It was a great group of people. There is also an Ostomy conference in Canada. Two years ago, I believe it was held in Nova Scotia. I would have liked to have attended, but the airfare was very expensive. No direct flights from where I live.

Thanks again Jpeters. Hope you have a nice weekend. Take care. LH

Stanley Me has a fantastic cover. Really eye-catching. It'd make a good wall poster. Will be interesting to read your book, from the perspective of someone two years out of surgery.

As it happens, I've always wanted to see Nova Scotia. But it's a 50-hour drive from Phoenix, which would take 4 days on a sane driving schedule. So that would be a 12-day fast, which gets a little rough. Still, the scenery would almost be worth it. That place is stunningly beautiful. St. Louis should also be interesting and has a lot of history. You and your husband might enjoy a carriage ride on the river, in the downtown area. It's supposed to be really scenic both day and night.

Thank you, Jpeters. I really like the cover design too. I am now thinking of the next book... my ideas usually come to me at night while I am trying to sleep. Yes, two years post-op. I can't believe two years post-op and then I think, two years have passed.

Yes, we are looking forward to the conference and touring the area. I read about St. Louis on Trip Advisor as I have found in the past the information posted is fairly reliable. You are driving to the conference too? How long is the trip from Arizona if you drive? Also, is your area getting all of that rain? I saw something on the local news about flooding in AZ. What strange weather we have been having this summer. Our area has been experiencing rain and overcast weather... not typical for the Northeast in June and July.

Take care, Jpeters. Have a great day. LH

It's a 24-hour drive to St. Louis, so it'll probably be a two-day trip. Luckily, none of the cities on the way are high-traffic. Driving once from Albuquerque to Cheyenne, the traffic added four hours to the trip.

We're getting tons of rain here too. We usually have big monsoon storms in July-August, so this is pretty typical for us. It causes flash flooding, but here they build the houses uphill from big drainage ditches, so it's not usually a problem. I wonder how the weather will be in St. Louis.

Hope you're doing well. JP

Looks like I won't be attending the UOAA Conference. We've got far too many projects right now, which is certainly good for a small company. It likely wouldn't be relevant to me anyway. Topics like intimacy and cross-country biking. I haven't had sex in 10 years and can't even jog without doubling over in pain. Plus the extreme stress of smelling like crap in public, standing in the corner and trying not to bother anyone. But it should be good for people with more functional stomas.

Also, I liked your book LadyHope. It's very conversational and friendly, and succinctly addresses the fears of people heading into surgery. It'd make a good addition to the UOAA materials that go in hospital rooms. It's also good as a Christmas present to someone facing surgery after the holidays, who would have the same anxiety you did in 2012. Oh, and there's a small typo on p. 18. It says "perfuse diarrhea", instead of "profuse."

Thank you so much, JPeters, for the wonderful feedback. I really appreciate it. I will let the publisher know about the typo too. Only one typo, I am very happy. According to my contract, a few mistakes are common and I should not make a big deal about it, but I am still bringing it to their attention. Maybe on a rerun, they will correct it. I read and re-read the copy so many times that I just overlooked it. The publisher has proofreaders but they missed it too:(

I am so sorry that you will not be attending the UOAA conference. I do understand work demands and other responsibilities. Work has been so busy for me too. It is hard to get away. If things happen to change, I think you would like the conference. I agree, some of the topics do not relate to me either. It was just a nice time to connect with others who are walking a similar path and who understand. I was hoping that one of the wound nurses or specialists there could help you with the odor and pain that you experience daily. I just kept thinking that they would know how to fix the problem... especially with so many ostomy specialists and ostomates in one place.

Thank you again for reading my book and for the feedback. My hope is that my book helps others who are faced with ostomy surgery. Take care, JPeters. Talk to you soon. LH

You're welcome LH. Glad I could spot the typo. Apparently, perfuse means "permeate or suffuse (something) with a liquid, color, quality, etc." Who knew?

Re: the conference, I've already seen so many GI docs WOCNs. It just doesn't seem likely the ones in St. Louis will have any new options. It'll be, yup, you're putting the bag on right, you should smell fine. Have you been tested for C-diff? Etc. But I hope you guys have a good time, and you get a break from work. Let us know how it goes. Take care, JP.

Hi Jpeters, thanks for the post. Hope you had a good week. I am sorry that you will not be able to make the UOAA conference. I completely understand regarding the anticipated comments from the GI/WOCN specialists. I feel the same way about some doctors. I have been seeing a few lately and I seem to be constantly repeating myself to everyone, not once, but over and over again. Doesn't anyone take notes anymore? It is frustrating to say the least. I just can't believe that the conference is less than two weeks away.

I had a thought Jpeters regarding the odor situation. I notice the wafer, after a few days attached to my skin, creates an odor no matter what I do. I use M-9, Na'scent or Safe and Simple to lessen the smell in the pouch but the smell is definitely coming from the wafer as it is breaking down and doing its job. The smell reminds me of the ostomy powder that I use. Do you think that could be happening with you? Maybe the wafer is causing some odor as it is breaking down?

Anyway, I have a busy Saturday. My niece is having her baby shower and she is expecting twins. I am so happy for her and her husband and blessed to be able to attend. Take care and have a nice weekend. LH

You can forget that you have a pouch. Wow! Even when I'm asleep, I am aware of it. Good for you!

Hi LH, thanks for your feedback regarding the old wafers causing odors. I only go out in public after eating nothing that day, irrigating twice, showering and changing the wafer/bag. So old wafers aren't an issue here. But they probably would make the problem worse. Congrats to your niece and nephew on their twins. They'll certainly have their hands full in the near future. Hope you enjoy the conference.

About to undergo an ileostomy. Any help?