Embracing the Present - Finding Gratitude in Pain-Free Moments

I have been seeing a lot of comments these days about living in the moment and I think that I finally get it!

There have been times when I am in pain. But, oh how great I feel when the pain is gone and I realize that I am not in pain anymore.

It's easy to know when I am in pain or discomfort from my ostomy. But when the pain and discomfort is gone, I don't always notice that. So, I have started to ask myself how I feel on a regular basis and when I realize that I feel free of pain, I am so happy and treasure that moment of realization. It's like "hey I am free of pain, Yippee"

I was wondering if any of you out there ever have that time of realization and if you feel grateful for it?

Hi,

I'm Marsha, and I've posted about this a few times. I have my ostomy for more than 50 years, so that's rarely an issue for me. But as I've gotten older (I'm 66), I've developed so many conditions that cause pain, that I was finding it difficult to deal with (kidney disease, arthritis, disc disease/back, sciatica, diabetic neuropathy to name a few). I also can't take aspirin (stomach issues), not supposed to take Tylenol, which can be toxic to the kidney, and Ibuprofen is a "no-no" for another reason I can't remember. So what's the alternative... live with the pain. For a while, it was really getting me down, until I decided to rate my pain from 0 (no pain) to 10 (extreme pain). I realized that all pain can't be a 10... And so when I wake up each morning, I take an assessment... if I get up, wiggle my toes, get to my feet, do a few stretches... and there's no *rateable pain, it's a pain-free day. I'm happy! In the past, one day of pain... or even a few hours, could ruin the day or even a week for me. Arthritic feet, ankles... yes. Pain, yes. Is it going to keep me from going into NYC for a show? No way. I ignore fashion, put on my sneakers and walking shoes, and go out for a good time. I may need to keep my feet up the next day... but that's okay. I'm glad you discovered how to "Live in the Moment". Don't let the few bad days ruin the good days.

Best Regards, Marsha

Hi Marsha

I read your bio and it seems we have many similarities. I am a 62-year-old woman and I had my ileostomy from Crohn's when I was 20, so over 40 years ago. I was married when I was 18 and stayed married with that husband for 18 years. I subsequently remarried and that didn't work out either. Now I have been in a committed relationship for the last 13 years. I don't have any children but I have never let my ostomy get in the way of anything that I ever wanted to do in life. I have worked in executive management for many years and traveled to Australia, Alaska, Europe, and Canada. I love to dance, golf, bowl, and play bridge.

I don't usually have any pain from my ostomy but once in a while it feels like I am having some cramping that normally goes away quickly enough. I sometimes have lower back pain leading to sciatica but thankfully, I haven't had this for the last couple of weeks. It was only yesterday that I realized that I have been pain-free for the last couple of weeks and that's what inspired me to write my last blurb.

It is typical for all of us to ask why we go through our trials and tribulations. Sometimes we come out stronger and more grateful. I pray I will always do that.

Thanks for your words and may you too always stay as positive as you are now.

Many Blessings, Redondo

I have had a wonderful trip to the UK -- would love to share places to see --- I had a difficult time keeping the bag attached to the skin -- like it was replacing every 2-3 hours and I did not have that problem before the trip or once I was there..mystery that I could have done without!!

I found it all very exhausting, but well worth the time and energy. I am planning on another trip over there this coming year to see the grandchildren! If you have a "must-see list" other than London and Nottingham area, I'd love to know some special places or things to include.

Hi Ewesful

There is a little island near the UK called Malta. I was born there. Many think that it is a very pretty little island. Europeans find it to be inexpensive compared to other European places. Google it and if you are interested in going there, let me know and I can recommend places to stay.

Happy travels

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hi, Redondo Ewesful,

Glad the difficulties with your pouch haven't ruined your desire to travel, Ewesful. I have to do 19+ hours of just flying time from New York in the States to see my grandkids in Australia. But this year, they're coming here... in December. Their parents want to show them "snow"! Brrrrr

Redondo, are you sure you mean Malta? I've been there, and it's actually off the "boot" of Italy, and I think a little west of Sicily. I went for a long weekend (yes folks, I travel that far for a 3-4 day trip) and we took a hydrofoil to Sicily for the day.

I had a fabulous trip/tour when I went to England... Started in London for 2 days before embarking on our "travels North... stopping at points along the way. I'd love to go back to the "Lake District/ William Wordsworth's home. We spent one day in Wales (not enough time) and then 3 days in Scotland (not enough time) and then drove down the East side of England on the way back to London. (Went to Cambridge to Oxford) We also spent some really nice time in York and loved the narrow winding streets and the little shops and restaurants. But for the most part, it was a "look/see, get back on the bus" kind of trip. So I'd really love to go back and stay put for a while. I'd like to go to Cornwall and spend some time at the resort/beach towns. So much to see and do... just need the time and the money, and of course good health. To have all three together is truly a blessing. We can meet in the chatroom one night to talk about travel. Anyone else interested, jump right in.

Hi

Sorry that I haven't written in a while. My mother has been visiting me from Canada for the last couple of weeks and she will be here for another 2. So, it is difficult for me right now to keep up with my emails and such.

I would like to chat sometime but I haven't figured out how to do that on this site yet.

And... yes, I definitely know that I, along with the rest of my family, were born in Malta. I know Malta is a little further from the UK but many from there like to vacation in Malta. You are correct about its location. It is 60 mi S of Sicily and 90 mi N of the tip of Africa.

It is ironic that you actually visited Malta. I hope you enjoyed it.

I enjoyed Australia as well. For some reason, maybe because of the UK affiliation, many Maltese immigrate to Australia. In Melbourne, there is a "little Malta" and I have relatives there. I also have relatives living in the UK, and I myself was raised in Toronto, Canada. Until 1969, Malta was under British rule and then became independent. So, it was easier for Maltese to immigrate to UK-affiliated countries. I joke that there are probably more Maltese living off of Malta than there are on the island.

Anyway, I hope to catch you back again soon.

Live your bliss and many blessings

I am grateful when, for a moment, I forget I have a bag.

Hey Moonshine

Hopefully you get many more moments to be grateful for. Over the last 40 years, I barely even realize that I have a bag. It's just become such a part of me that I don't even think that way or even remember thinking that way.

Take care

Hi Redondo,

I absolutely loved Malta, and I was only there for a "long weekend". It was a bargain... and one of the first international trips I took. I was surprised because I thought it was going to be more like Italy. Instead, I found it more "Mid Eastern" and so interesting. I loved the geography, the people, the food... I went with a friend, and a group of his friends, but three of us paired off and had a great time on our own. We unknowingly grossly overpaid our taxi driver... to take us on an evening tour, and at the time didn't understand why he was waiting for us in the morning, ready to take us out again. I'm sorry I didn't write a journal of all the things we saw and did in four days. One of the most moving was a group of "holy" people and residents walking through the streets at night. The views of the waterfront areas were fabulous, and we also took a trip to an "old walled city" and did a tour in a horse-drawn carriage. The trip was a long time ago... but was magical. And because we were so close to Sicily, we took a day trip by hydrofoil... left at 5 am and didn't get back through customs until 1 am. But we 'danced' in the craters at Mt. Etna, before it exploded again... and I could go on and on... I guess you can tell, I love to travel. So much to see and do... and so little time money... But I'm grateful I've done as much as I have.

Marsha

Hi Marsha.

I am so happy that you enjoyed Malta. I know the walled city that you mention. It is called Medina. It was originally Malta's name. There is unbelievable so much history for an island that is only 17 mi long. You gave me goosebumps speaking about some of these areas. I too love to see different places and would love to go back to Malta again soon, except I hate the traveling part.

Between you and me though, I think that I was fortunate that I wasn't living in Malta when I had my Crohn's problem and needed my ostomy. I don't know if they would have been able to look after me as well.

Where do you live now?

My entire life revolves around pain/disability; from the ostomy. I have no problem in life that wouldn't be instantly solved by not having an ostomy. I had more fun in a weekend when I was healthy than I do in a year now, and probably suffer more in a week than I did in a year of living normally.

It helps to reorganize your life around the stoma and isolate yourself from other people, but there's only so much you can do.

From your post, it looks like we got opposite results. It raises the old question, how many people end up like you, and how many end up like me? There are so few QoL studies, and most rely on self-reporting from a small group of older patients, who were usually dying of cancer. This, in no way, provides an accurate picture for younger, healthier people considering an elective stoma.

So you end up playing Russian roulette with no idea how many chambers are loaded. And if you lose, you'll spend the rest of your non-life bitterly regretting it.

Hi Jpeters, I just read your post and wanted to say hi. We have not chatted in a while. To comment on a previous post of yours, I often look at ostomy appliance advertisements and wonder, do the models have ostomies? It should be a prerequisite to making the ad... don't you agree? Yes, I can relate to the fun aspect. I went to a baseball game the other day in the city and, of course, had to use the bathroom. What a PITA.... I should use another expression... LOL. I was having issues trying to empty, standing up, in a dirty stadium, well-used bathroom. I managed, but it was not like the old days. I sometimes feel that my life revolves around my stoma. I agree with you about the medical studies. It appears that the medical profession is pleased with the ostomy as it saved a life... these posts seem more accurate about what life is really like living day to day with an ostomy. Will you still be going to the conference in Sept? Take care. LH

Hi LadyHope. It's nice to hear from you. Hope you're doing well, and enjoying your 4th of July weekend. I agree, supply companies should use real ostomates in their ads. They make reasonably good products, but they also have a major financial incentive to convince people to get ostomies. They bombard ill people with ads showing how great life will be when you're wearing their bags. For some people it's true, and for some it isn't. You're absolutely right about the doctors. Do you think they'd feel differently about the stoma if they had to get one? Maybe if surgeons had stomas, we'd see more progress in this field. I am still planning to attend the conference, and looking forward to meeting you and your husband there. Best, JP

Very interesting that you bring up the point about the doctors, nurses, and ostomies. When I was very ill, I asked every single medical professional that I came in contact with if they had an ostomy. None of the people who were directing me had an ostomy. Guess what....finally I met someone at the UOAA conference who was both an ostomate and a practicing wound care nurse. As the saying goes...she talked the talk and walked the walk. I was very happy to meet her. She shared her story with me and assured me that once I got used to the "new normal" I would be okay. The new normal is not as new but I try to take it one day at a time. I keep telling myself, maybe one day a medical genius will develop something to help ostomates...maybe grow a new colon in a lab, repair a damaged rectum, cure GI disease, cure cancer, repair damaged intestines, etc. I keep looking forward with hopeful anticipation. Maybe one day soon.....LH

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