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Wannebe ostomate

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Cat momma
(@cat-momma)
Joined: 12 months ago
Posts: 94
Topic starter  

Hi there,

I am single, live in the EU, and have two (black) furbabies named Rufus and Mickey. I work full time as an income consultant for a local government body. My team and I provide housing and income for refugees that have received their residence permit, and we help them to become financially independant.

I was born with anorectal malformation (arm) 47 years ago and have dealt with fecal incontinence all my life. I have an appointment with a surgeon in April to discuss colostomy options.

I already have the go ahead to get a colostomy from the pediatric surgeon. My next appointment is with an adult care surgeon, since the pediatric surgeon is not allowed to actually perform surgery on an adult. But she will be present for consultation during the surgery. Sounds complicated, but this is the way it's organized in my country as part of the 'transitional care' scheme for adult patients born with arm. 

I have been watching lots of ostomate youtube videos, but I've noticed most are from people with ileostomies. Which are still quite helpful, by the way.

I am very happy to have stumbled upon the Vegan Ostomy channel, I became a vegan around 2015-ish. Things are not very well organized for vegans who are admitted to a hospital where I live. Vegan meal options are usually extremely limited, which makes me a little apprehensive about my post-op stay. I will request a pre-op consultation with a hospital dietician, but any tips on how to survive as a vegan during a hospital stay are welcome!

 

Incontinent in a better way, since 12 July 2023


   
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(@john68)
Joined: 6 years ago
Posts: 2018
 

Hi Cat Momma, Welcome to the forum. Many thanks for sharing your interesting life journey. Yes a colostomy is different than an ilio but the concept is the same and we have both sides here. I will say after all you have been through the stoma while a learning curve will be a real game changer. I hear your concerns with the hospital providing meals. I was in for about 10 days to give you an idea of time . It’s an open non judgmental place here and a library of info so look forward to hearing more from you. As a last note be aware and careful about a good placement for the stoma. Ie where the appliance will sit without skin folds and suits your waist band. Best wishes ?

ileostomy 31st August 1994 for Crohns


   
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Fred
 Fred
(@fred)
Joined: 7 years ago
Posts: 81
 

Hello,

I have been irrigation for almost 2 years not by choice but need. You have probably my posts (Fred) above so  won't repeat my story. To me it's a rather delicate operation because it's invasive and there is the potential to injure the stoma.  Some people swear by it. There is information on irrigation on the UOAA (United Ostomy Assoc of America) website and several articles on their Forum discussion board.

Fred


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4176
 

Posted by: @cat-momma

I will request a pre-op consultation with a hospital dietician, but any tips on how to survive as a vegan during a hospital stay are welcome!

Firstly, welcome! And thank you for your introduction ? 

I do have an article specifically to help address food concerns during hospital stays. Check it out here.

Speaking with the hospital dietician is a great plan, and they will know the hospital menu better than you'd be able to figure it out on your own, which gives you an advantage with room for planning.

I have been watching lots of ostomate youtube videos, but I've noticed most are from people with ileostomies.

My suspicion is that because ileostomy surgery tends to be more common in younger people, and younger people tend to be create more content on platforms like YouTube, you're seeing a somewhat unbalanced representation of ostomates.

There are more people with colostomies than ileostomies, and while the care is slightly different, most of the information transfers between the two pretty seamlessly.

Best of luck with everything! ? 

 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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 LK
(@dlkfiretruck)
Joined: 6 years ago
Posts: 1449
 

@Cat-momma ... Hello! Sorry for the late reply.   I read your post last week but was unable to respond at the time so I wanted to check in with you tonight & see how you are doing & if you've had any headway on your appointments. 

You've been through a Lot!  I certainly understand about wanting an ileostomy though at the time I'd only heard of colostomies.  My medical issues went on for way too long before I was finally listened too & given the correct tests to show the need for an ostomy.  Once given one  I have never looked back or been sorry for my choice.   Thats not to say it came without challenges at times but once you figure it out & certainly with all Erics devotion & videos & the forums of other ostomates, this site has made a huge difference in my life!  

I also wanted to suggest that you may be able to speak to a hospital dietitian ahead of any hospital stay & put your concerns to rest, even if its over the phone.  You will likely need your family doctors referral but you have the right to ask. Don't be afraid to ask for a copy of the meals made or served sent to you. 

 I have an ileostomy, 14 + years in.  I've been hospitalized a fair bit over my guts & in the last 4 years.  I  have managed to avoid our local hospital by changing my diet a lot & I am still  making changes steadily in my diet towards being Vegan or at least as much as possible.  I too have a lot of the same concerns about diet in hospital.  I live in a small town & after reading your forum I think I'll be checking into whats dished out before I need to  be a patient again. Your forum was a good reminder for me. Thank you. 

On that note,  I'd like to say if anyone lives near St. Pauls Hospital in Vancouver B.C., having such a strong diversity of humans from all walks of life have what I felt was an amazing meal plan for Vegans & I was not even thinking Vegan at the time but patients were given a menu & ordered meals ourselves verses our small town hospital where you get what you get. However to be fair, hospitals make changes all the time so I'll be checking out what they serve ahead of any possible next stay in ours!! Lol! 

Allow me toss a question out there out of curiosity...Does anyone else bring their own small tupperware salt & pepper shakers with them for a hospital stay?? 

Linda


   
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Cat momma
(@cat-momma)
Joined: 12 months ago
Posts: 94
Topic starter  

Hi all,

I had my consultation with the surgeon today. Time frame is anywhere between three weeks and three months. He explained some concerns he has regarding my anatomy and the consequences these may have for the surgery itself and stoma placement. He was very clear, explained everything very well. 

I was able to voice my concerns about the laparoscopoc surgery. I told him I don't want to wake up with my mega-ureter stitched to my abdominal wall. Luckily he has a sense of humour, he laughed and assured me they will resort to open surgery if they find anything unexpected or that they can't do laparoscopically. He explained the risks and possible complications, so he was very thorough.

He understood my concerns about food during my hospital stay and will arrange a tele-consultation with a hospital dietician. Next up: abdominal screening and lab work, pre-op consultation with stoma nurse and anesthesiologist.

All in all, I'm happy with this consultation. Now the waiting begins.

Incontinent in a better way, since 12 July 2023


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4176
 

@cat-momma I'm really happy to hear that your surgeon took the time to explain everything. My surgeon was awesome, too. Good luck with your upcoming appointments!

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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 LK
(@dlkfiretruck)
Joined: 6 years ago
Posts: 1449
 

@cat-momma  ... Wow, that was a good appointment for you & hopefully a good outcome in the end.  I'd suggest while waiting that you make  a few notes about what you want to ask the dietition.  Ask anything you need even if they'll prepare what you typically eat.  

I've been eating so differently since becoming a member here & I'm really enjoying the benefits.  A month back I was craving all sorts of foods & made a huge error by eating foods I've purposely stayed away from... now I remember why!!  I've  been paying painfully for that decision since.  I've been eating foods that have now caused inflamation, gas & PAIN.   I've gone back to eating foods I was told to avoid & finally my gut is starting to recover but its been a... long... slow... process.  

I've also realized that fear of this happening again bcuz I'm in hospital that I will be carefully scrutinizing hospital vegan meal programs simply to avoid this rather nasty experience. 

Your forum has brought to light for me a topic I too need to discuss with the kitchen powers that be,  especially here in our small town ... so Thank you! 

Keep us in the loop & if you need any tips on what to have on hand when you come home from Hospital with your shiney new stoma, maybe you'll have everything you need to be prepared. After surgery make sure you do the required walking no matter how hard it feels.   I believe we recover quicker bcuz walking really helps with waking sleepy guts, glands & other organs from anesthetic.  Drink plenty if fluids to help wash away the heavy meds too.  Just know we are here for you & have a lot of tips to share. Good luck & don't be a stranger,  no question is a dumb question!! 

Linda

Linda


   
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Cat momma
(@cat-momma)
Joined: 12 months ago
Posts: 94
Topic starter  

Thank you everybody for the kind words, I really appreciate it!

@dlkfiretruck So sorry to read about your digestive troubles. It can be hard to avoid foods you enjoy, but know will cause you problems. I have a problem with garlic, whether it's powdered, raw or cooked and cauliflower. Makes me extremely gassy and smelly. But garlic is very hard to avoid, unless I am able to prepare my own meals. Glad that your issues are resolving, even if slowly.

My next appointments seem to be scheduled already, I can't really tell from the information in the hospital app what kind of appointments these are. At the end of April there seems to be a pre-op screening and maybe an appointment with the stoma nurse. In June there's an appointment with the surgeon, but that could also be the surgery itself. I'll have to wait until I get the actual letters to know exactly. At least there will be ample time to experience what it's like to have an ostomy bag on my abdomen. 

I am very worried about the pre-op prep. They will have me do that at home, which is fine, but then I'd like to get to the hospital the next day with some dignity... It's about a 45 minute drive to get there and I'm very scared the laxative will still be active.

Guess I'll have to buy some adult size diapers or something :( Hopefully that will be the last experience I will ever have with anal incontinence!

So, hopefully I'll have about a month to train someone to replace me at work during my recovery. IF  mangement willhurry up and recruit someone asap. If not, I know it's not my problem, but I'll have to face a huge mess when I come back... Fun fact...  my team leader told me his 20-year old niece was also born with ARM. 

Incontinent in a better way, since 12 July 2023


   
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 LK
(@dlkfiretruck)
Joined: 6 years ago
Posts: 1449
 

@cat-momma  ... Hey you! Thats great you got appointments lined up already.  When I had my first bowel surgery I did the prep at home too & then we had to drive 1hour & 40+ min to the hospital. I was terrified I'd have an accident too. 

So... the next time I had a planned surgery & needed bowel prep, I did it a day early. But 1st ask your doctor if thats okay!!  The other side to that is you can't eat untill after surgery & still must REMAIN HYDRATED ! This is highly important especially for surgery. 

So maybe consider asking your Doctor about doing that to ensure a better trip to hospital.

Linda


   
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Cat momma
(@cat-momma)
Joined: 12 months ago
Posts: 94
Topic starter  

@dlkfiretruck Oh wow! That's a great tip, thank you! Will definitely ask if doing the prep a day early is possible. 

To be honest, I'm not just worried about my dignity. I have chronic bladder infection with multi-resistant bacteria. Because of that, I'm at risk of bladder cancer, I get screened every year. So every time I don't make it to the toilet in time, there's a chance of new bacteria making themselves at home in my bladder. It's part of the reason I want this ostomy.

I received the letters for the appointments. End of April is the pre-op screening and consultation with the anesthesiologist. 7th of June is an appointment with a stoma nurse for placement. They'll also ask questions about lifestyle and such. They'll want me to practice at home with some materials. I got sent a hefty brochure with information about ostomies, products, how to change the appliance, diet, irrigation and contact information of the ostomy association. I greatly appreciate the info about which types of products are or aen't covered by basic health insurance.

For the anesthesia they sent me an informational video about the different types of sedation and when they might use which, the risks and possible complications of each, etc.

This hospital gets a 10 for pre-op information from me! 

Incontinent in a better way, since 12 July 2023


   
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Chelly
(@chelly)
Joined: 1 year ago
Posts: 484
 

@cat-momma I think your making a good choice getting the Ostomy. At least with the pouch you can control the focal  incontinence.it will be in the pouch no where near your area for bladder infections. You can stand when you empty too.


   
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 LK
(@dlkfiretruck)
Joined: 6 years ago
Posts: 1449
 

@cat-momma ..  I'm so happy for you. Your joy reminds me so much of how I felt when my surgeon finally told me it was time for the ostomy. I think I sat back in the chair so firmly it made a loud enough noise that He asked if I was okay & I burst into tears.  He thought I was upset about it but in truth I was extremly relieved!!  I was a frequent flyer in the lab for urine tests & at the pharmacy for bladder infection antibiotics & a little magic pill that took the burn out of passing urine. I should have written the name of it down.  Lol! If you know of it, please tell me. I have no clue how long its been since an infection anymore, but I know having the ostomy has redireced a lot of issues! 

That sounds like a great information  package! All your work & looking for info will pay off.  For sure try a piece of a wafer to a pouch but on the opposite side of where the stoma may be on, to see how it feels.  This way if theres allergy issues at all you'll be aware ahead of time & you have time to remedy it.   Remember you won't be the first with allergic issues, do not panic if there is something.  See you GP for help.

Remember to mention you have a support system through VO as well. They obviously want you well prepared and I think you are well on your way to being a successful ostomate! Don't forget to pick a name for your stoma, it'll help you connect with your new little buddy even if you change its name over the years! Lol! 

Close to surgery, I'd say 3 to 4 weeks, Avoid crowds & others with illnesses that think its okay to be in public sick, even family!!  Protect yourself from cancelation or delays this way.  A fever will delay it. So just stay safely away from well meaning sick people. 

Before surgery,  pre-stock good satisfying liquidds to help stay hydrated & follow instruction to a T!  Soups & easy to digest soft foods are good to have on hand for home after surgery.  If you enjoy clam chowder & cream soups, they're very good during healing time. 

Making freezer meals you enjoy ahead is a good idea for days your guts may be more active and you may feel more tired or even dehydrated. I wish I'd read up on dehydration symptoms before I started experiencing them. They don't always mean a ttip to E.R. anymore BUT... if in doubt be safe & go. 

Again, Such good news you have! Enjoy that joy alone! 

Linda


   
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 LK
(@dlkfiretruck)
Joined: 6 years ago
Posts: 1449
 

@cat-momma ..  I'm so happy for you. Your joy reminds me so much of how I felt when my surgeon finally told me it was time for the ostomy. I think I sat back in the chair so firmly it made a loud enough noise that He asked if I was okay & I burst into tears.  He thought I was upset about it but in truth I was extremly relieved!!  I was a frequent flyer in the lab for urine tests & at the pharmacy for bladder infection antibiotics & a little magic pill that took the burn out of passing urine. I should have written the name of it down.  Lol! If you know of it, please tell me. I have no clue how long its been since an infection anymore, but I know having the ostomy has redireced a lot of issues! 

That sounds like a great information  package! All your work & looking for info will pay off.  For sure try a piece of a wafer to a pouch but on the opposite side of where the stoma may be on, to see how it feels.  This way if theres any  issues at all you'll be aware ahead of time & you have time to remedy it.   Remember you won't be the first with  issues, do not panic if there is something.  See you GP for help.

Remember to mention you have a support system through VO as well. They obviously want you prepared and I think you are well on your way to being a successful ostomate! Don't forget to pick a name for your stoma, it'll help you connect with your new little buddy even if you change its name over the years! Lol! 

Close to surgery, I'd say 3 to 4 weeks, Avoid crowds & others with illnesses that think its okay to be in public sick, even family!!  Protect yourself from cancelation or delays this way.  A fever will delay it. So just stay safely away from well meaning sick people. 

Before surgery,  pre-stock good satisfying liquids to help stay hydrated & follow instruction to a T!  Avoid gas causing foods for a while. Soups & easy to digest soft foods are good to have on hand for home after surgery.  If you enjoy clam chowder & cream soups, they're very good during healing time. 

Making freezer meals you enjoy ahead is a good idea for days your guts may be more active or you may feel more tired or even dehydrated. I wish I'd read up on dehydration symptoms before I started experiencing them. They don't always mean a trip to E.R. anymore BUT... if in doubt be safe & go. 

Again, Such good news you have! Enjoy that joy alone! 

Linda


   
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Cat momma
(@cat-momma)
Joined: 12 months ago
Posts: 94
Topic starter  

@chelly Yes, I really hope it will work out that way. I'm not sure if I'll be able to use a drainable bag with my colostomy. Time will tell. Where I live, toilets have way less water in them than American toilets do, so less chance of splash back anyway.

@dlkfiretruck Thank you Linda, for your kind words and advice. They mean a lot to me. 

I do intermittant catherization so I usually don't notice a bladder infection in the early stage. No burning for me to tell me. When an infection progresses I can tell because I get very, very tired and it starts to hurt in my left flank. I was able to fight my last infection off by flushing my bladder twice a day, with the approval of my gp I chose to not take antibiotics.

I am trying to prepare as best as I can. I bought a washable incontinence sheet to protect my matress (my incontinence rarely happens at night and I haven't soiled my bed in over 20 years), in case the stoma blows out or leaks. And a robot vacuum cleaner, that can also mop. I found a few companies that can deliver frozen vegan meals that I only need to heat in the microwave. 

I'm used to meal prepping and my freezer is usually well stocked. On weekdays, my microwave does all the work. And there's always mashed potatoes, lol...I am not sure what diet restrictions I'll have after surgery. Hopefully the stoma nurse can tell me more. And I'm still waiting on a call from a hospital dietician.

Hydration might be a problem. I can have lots of fluid retention, but still have horrible thirst and dry skin and sometimes headaches. But my urine will be almost clear. I think this is because of certain medication I'm taking. I avoid added salt, because that makes me even more thirsty, and at some point, my left kidney will swell up with fluids, which is very uncomfortable. So I'll have to ask for advice on how to deal with that. Thank you for reminding me!

I've been thinking about a name for my stoma. I think her name will be Tilly. Aunty Tilly was a character in a TV show I used to watch as a kid. She could solve most problems with a 'little smudge of pink' paint. Most Dutch adults of my generation watched that show and loved it!

Incontinent in a better way, since 12 July 2023


   
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Cat momma
(@cat-momma)
Joined: 12 months ago
Posts: 94
Topic starter  

Update: I had a call from the hospital dietician today. For breakfast and lunch I'll be bringing some stuff from home, for sure. I think I'll tire really quickly from pb sandwiches, or apple syrup on toast. I was told they would be able to provide warm vegan meals, thank goodness.

They'll also have vegan fluid nutrition and vegan bouillon for the day after surgery. 

All in all, I'm not so worried now. The dietician told me she would keep an eye on the planning so they can order things in time.

Incontinent in a better way, since 12 July 2023


   
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Cat momma
(@cat-momma)
Joined: 12 months ago
Posts: 94
Topic starter  

I'm a little behind, but a few weeks ago, I had my consultation with the anesthesiologoist. The pre-op screening was also scheduled, but something went wrong in the hospital planning so it got postponed untill the 7th of June.

I had a good talk with the anesthesiologist about pain management after surgery and such. I also asked about a suprapubic catheter and he said they don't usually do that anymore.

But I do want one, because I can't pee without a catheter. I'm afraid I'll be unable to do it myself shortly after surgery. He explained about risk of infection, but my bacteria are already in there anyway, they'll probably even fight off any new ones trying to move in. So he assured me he will pass on my request for a suprapubic catheter for after surgery, just untill I can cath myself again.

While I'm waiting for the next appointment, I'm loosely following a hyper nourishment protocol (look up "Goodbye lupus" for more info on that). It's not easy, some days I can hardly stomach the smoothies with all those flax seeds in. And they make me feel so cold sometimes. But I'm hoping they'll help me heal faster after surgery.

I've also taken excercise a bit more seriously, focusing on core workouts. I've learned that having a strong core before surgery will help to prevent hernia's afterwards.

Now, just waiting untill the 7th of June and getting slightly impatient. I hope they'll not wait very long to schedule the surgery after I've been marked.

Incontinent in a better way, since 12 July 2023


   
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Chelly
(@chelly)
Joined: 1 year ago
Posts: 484
 

@cat-momma hi, I’m sorry they had to push out the surgery. I’m really surprised they are not thinking of cathing you. With both of my ileostomy surgeries I was. I’m in the United States though and not sure where you are. Sometimes different countries do things differently. Here in the US they gave me special nutrition drinks to drink before surgery. 
just remember that the stoma itself is s hernia of sort my stoma nurse told me because they pulled a peice if the intestine out. She says that’s why it’s so easy to get parastomal hernias when you have a stoma. My suggestion is buy a binder or ask the hospital for one before you leave. Cut a hole for  your bag to go through and wear it whenever you’re doing anything strenuous like carrying groceries, l carrying laundry etc.. don’t be moving anything heavy at all. Take it from me 3 hernias and no fun. Baby that belly a bit. I’m sure somewhere there are safe exercises to do with a stoma I just have not yet looked into it. 
it’s good that you are doing your research and getting familiar with things beforehand. I on the other hand knew I was getting mine about a month or so before and i did no research so I had to learn everything after the fact. 
don’t worry about the marking. I was worried about that too but it all works out.


   
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Cat momma
(@cat-momma)
Joined: 12 months ago
Posts: 94
Topic starter  

I think they won't plan the surgery until after my visit with the stoma nurse. I don't think I'll have to wait much longer after that, or at least I hope so. 

At work they have finally done a job posting for a second me. Hopefully, I'll have some time to train the new person. They also have my replacement lined up. Someone who worked at my location before, which is great! This was the one thing I was most worried about. My job is unique, meaning I'm the only one doing it in this municipality. I have a little over 80 clients and that amount grows every month. We are having an influx of aylum seekers since about two years, so it's all hens on deck. 

As for prep, I have a bottle of stuff I have to take the day before surgery, to empty me out. And I'll probably do clear liquids or veggie smoothies the day before I take the prep stuff. 

Incontinent in a better way, since 12 July 2023


   
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Chelly
(@chelly)
Joined: 1 year ago
Posts: 484
 

@cat-momma it sounds like things are coming together and the time is getting closer. Everything will be fine. I was worried about work too when I had my surgery. I quickly learned though it’s time to take care of me until I felt ready to go back. I did go back 3 weeks after my temp ileostomy but with my end ileostomy ( proctocolectomy ) I told my husband that this time I’m not going to worry about work or money and I listened to the docs. I went back 6 weeks after that one. Then with my hernia surgery I went back in 4 weeks I think.
I remember having to clean out with my first surgery.  I think that’s the hardest part and not being able to eat. I don’t know where you are located but if you are in the United States have them order all your regular medicine thst you take at home because that was a fiasco for me. They would not let me bring the meds and it was a struggle getting them to order them. The next time I just brought them and they took them away from me and sent them to their pharmacy and I never got them back.


   
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