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J pouch or end ileostomy as a FAP patient, please help  

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Blaze
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October 4, 2018 5:54 am  

Hello to everyone! The following is my story (pretty long read but I made a short version too) I posted on another forum as well but I thought maybe I could get more help/information by asking veganostomates too, I do hope you do not mind. I am not vegan btw but I hope that is not an issue either. :)

Anyway here is my story and my questions:

Short version:

I am a FAP patient and I will have my colon and rectum removed. My doctors want me to go for the J pouch but because I could develop polyps in there and also because of all the possible complications/issues (explained below) that could come with the pouch I am thinking about going with an end ileostomy which for some might sound stupid but the less surgery the better for me and it seems to grant a more stable life "outcome" then the J pouch which could fail before I die, giving me more trouble at a later age or even before. But ileostomy has its own issues as well and my concerns are explained in detail below which makes it really hard to decide.  This is why I am in need of help from you because doctors do not have to live with a pouch be it internal or external, they have no experience with using them and living with them. You do, and this is why you could give me real help in deciding what to do, this is why I turned to you. Thank you, everyone, who reads my post be it the short or the long version!

Long version (full story):

Hi! I am new here and I really need help, English is not my first language so please forgive me if my English is bad. I have so many questions and doubts, honestly I am in a dark place right now. I have been diagnosed with FAP (Familial adenomatous polyposis) a few weeks ago, I have hundreds upon hundreds of polyps in my colon and a few in my rectum as well as some polyps in my stomach (not sure what is going to happen with these yet). The doctor said that my colon and probably my rectum has to go because I would have cancer in the next 5 years with a 100% chance. I am not ready to die and I also have a beautiful little boy and an amazing partner and they need me. You could ask why I am in a dark place if I have such an amazing family but it is me, I was always a bit negative, maybe because of my illness I do not really know but I tend to be too negative at times and this is the case right now as well.

They help me so much, without them I do not really know how could I even handle all this but the truth is that we do not know much about what my life is going to be, we do not even know if I should go with J Pouch or an end ileostomy. I asked my doctors in two hospitals about my worries but honestly, they pretty much want me to accept what they tell me without questions and they are pushing me towards J pouch. You might know the feeling when you ask a question from a doctor and he says "Ask anything you want!" but you see his face telling you that he does not really want to answer you...

Before I continue I also have to mention that I have a couple of amazing friends too, who have been with me along the way and they helped me a lot!

So we did a lot of research online but the internet is a tricky beast as you may know. First, as my doctors advised me to go with the J pouch I was happy since it seemed my life would be more or less the same as it is now, 3-6 BMs a day (I was hoping to get a better result but I can live with that...), some diet, and more liquids because of the dehydration, it all seemed pretty good until I started looking after the possible issues, complications and then asking a few questions from my docs. The possibility of incontinence or just simply soiling myself, the pouch not working properly, having to wear adult diapers, adhesions, not being able to sleep through the night because I have to go to the toilet, always having to fear where the next toilet is (which I can actually use...), pouchitis, cuffitis and so many other even life threating complications that I was beginning to question if I really want to go with the J pouch. Also, if at some point I want to get rid of the J pouch, well that is not an easy thing to do, not at all, big surgery with a lot of possible complications.

I think it is time for me to mention that I really handle being in the hospital or at a doctor very very poorly, I am so stressed and fearful that it does make me at times hard to bare, I am not an easy patient, I am trying to handle it better but with little luck. Originally my dream was to never ever have surgery and die of old age but that is obviously not going to happen now. Simply put I fear everything related to sickness. Maybe it a childhood trauma, I really do not know but it is a fact, so this indeed factors into my decision as well since I want to have the least amount of surgeries.

With J pouch that would be the very least 2 surgeries for me but if something goes wrong as I read a lot of stories here and on other forums and youtube and so on this count could go up way higher.

Also since I have FAP, there is a really high chance of me developing polyps in the pouch as well, maybe I could get 5, 10 or maybe even 15-20 years out of the pouch without issues but I am 35, which would mean that around the age of 55-60 I would have to go through this hell again and who knows how it would end at that time.

I immediately started looking into what alternative options do I have. K pouch is kind of the same story as J pouch, although I could control it to a degree myself, my illness could attack it as well, lot of possible complications... long story short I put this idea on the shelf for now, it is good to know that unlike with the J pouch I can go back to the K pouch if I can't live with an ileostomy while if I pick end ileostomy I can never really go back to J pouch anymore unless I leave everything in place for it (I guess?) which means that there will be stuff coming out of my butt as well as my stoma which doesn't really sound fun to me at all, I need fewer things to worry about not more.

So I started looking into end ileostomy. My body image is not really an issue for me, I learned to live with my illness which made me "weird" in others' eyes, going to the toilet a lot of times, being pale all the time of the blood loss, not arriving on time most of the time, not going out often, not traveling etc. well a bag on my side which can be hidden is not that big of an issue to me really compared to that I thought. I have to add I never liked this way of life, I was a very happy and very active guy before my illness but my fear of hospitals and my illness took over me, I let them which is my failure and I have to live with that and I do hope after the surgery I can change this and this is also kind of my goal, to live a happy and active life, my partner misses the old me too and I want my son to see me happy not like this.. BUT, my biggest fear was always that I soil myself...now you can imagine when I read about constant leaks, ostomy pouch falling off of me whether it is me not securing it properly or the adhesive giving in to hot weather or something else, not being able to sleep safely because of the possibility of leaks and blowouts (I am also sleeping on my tummy so I would have to get used to sleeping differently or squash the bag overnight which isn't fun as I read about that too..) and whatnot, not being able to sleep through the night because I need to empty at least once (although this is something I could accept I think), blockages which are terrifying to me (but I know that can happen to J pouchers too), not being able to safely travel, hernias thus not being able to lift anything (again I know this goes to J pouchers too but I want to be able to help my family with shopping....) and so many other things it would be an even longer post if I listed everything. So I am quite sad right now because I thought the stoma could give me an outcome where I would have a chance of not fearing my illness anymore 8besides my stomach polyps) and be happy and sort of free again...

And lastly about the barbie butt surgery...since I am thinking about an end ileostomy and I do not want to have two "holes" to manage (butt and stoma) the choice of closing my butt was obvious but again I read so many bad things about it (not being able to sit for a long time, bleeding and so on) and the fact that my work requires me to sit at least 8 hours a day doesn't make it better either and I want to go back to work as soon as humanly possible. Maybe someone could give me hope that it's not that bad?

Anyways I wrote all this down in hope to get some kind of help in making my decision, and maybe help me see my future in a better light, to be able to get out of this dark cloud I have around me right now. How is life with a J pouch and how is it with a stoma? Is it really that bad? Will I regret not going with a J pouch if I pick end ileostomy? Please help me get to a better place. Also, it would be nice to be able to get help from those who have FAP and went with either a pouch or a stoma, to know what their experiences are since this disease is quite a bit different from inflammatory diseases.

I would like to thank everyone who took the time to read my story, I wish everyone the best of health and a happy life!


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Blaze
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October 4, 2018 6:02 am  

Something I wanted to add to my original post is that the more I research both J pouch and ileostomy the more it seems to me that even though J pouch patient have a rough road as well they seem to be happy with their pouch more or less while ostomates usually hate/are not happy overall with their situation and this is a something that makes me very sad because my initial decision was to go with the ileostomy since my illness could produce cancerous polyps in my pouch and have a lot of complication requiring more surgeries etc. which is just not something I could take but seeing as how unhappy ostomy patients are in most cases I am questioning my initial stand.

I really need to know if there are people who are actually happy with their life even though they have an ileostomy. I know none wants a pouch of any kind but if I will be unhappy and depressed etc. all the time I might as well risk the J pouch with all it's possible downsides and risks and complications.


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john68
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October 4, 2018 8:46 am  

Hi Blaze, Welcome to the forum, I have to say you are being very open, honest and sensible about the decisions you have to make. I have an ileostomy so any thoughts or advice comes from that side of the fence. I only had the choice of the ostomy and after suffering with crohns it was a easy but scary choice. I was 26 when the surgery was done and I can say hand on heart it has never held me back. Yes their are many up hill struggles and changes to make but nothing that can,t be sorted. Having support from the medical side and friends and family is the key to success with an ostomy. Yes their are unhappy ostomates but their are more very happy ostomates. I turned 50 recently and do I look back and think why did this happen? sometimes but the healthy life you can lead is amazing!!! Many more replies and help will come in and at the end of the day the decision is yours. I wish you well and please know this site Eric has put together will be very important which ever surgery you go with.

ileostomy 31st August 1994 for Crohns


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Blaze
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October 4, 2018 11:04 am  

John, first of all, thank you for taking the time to read my post and answer, it really means a lot! I am being open and honest about everything related to my issues because I do not see any point in hiding anything, and others cannot help me if I close up and this is a situation where I very much need help, as much as I can get!

About ileostomy, I do not think the external pouch itself would bother me and my amazing partner actually pushes me towards the ileostomy instead of the J pouch because she is afraid of the complications and issues with the pouch and knowing me she thinks ileostomy would be better suited for me and she also doesn't care about the external pouch, she wants me alive and healthy, that is what she cares all about. I think my little boy will not mind the pouch either when he will understand why I have it, at least I do hope so. All in all my family needs me and the ileostomy seems to be the more stable/dependable choice where you can actually know what can happen while with a J pouch there are serious issues that can occur like sepsis, incontinence, 10+ BMs per day etc. which could mean my situation could become  very bad possibly worse then before the surgery. Even in an ideal case 3-6 BMs are a lot especially if you can't hold it, and let's not talk about soiling yourself during the night or even at daytime. I do know leaks are kinda the same with ostomy and it is in my "what bothers me about ileostomy list" but at least you have a chance to solve leaks by yourself with a new appliance or better care of yourself which is not much of an option with J pouch. On the other hand with a J pouch you pretty much go by your daily routine as you were before the surgery, just more frequent BMs and such but you do not have to care so much for yourself (no appliance etc.).

Anyways my biggest fears with ileostomy are:

- leaks (especially overnight asleep since I used to sleep on my tummy) or appliance falling off of me for any reason

- not being able to sleep overnight ever (getting up once is ok but I am not falling asleep easily so...)

- blockages (both because of the pain and not be able to go do my daily routine working and such and because I really do not want to end up in the hospital ever if possible after my surgery, I know I will but I really really want to limit the visits to the hospital!)

- developing hernias :(


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john68
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October 4, 2018 11:30 am  

Hi Blaze, Am only as we all are here too happy to try and help. On those questions. Leaks yes they can and will happen, most of the time you will get a warning and get time to sort. A night time leak can be the worst as of course you are not aware until its way to late. Yes most ostomates will get up during the night to empty. Blockages well certain food cause problems and we have to make sure to chew or prepare in a certain way. This all does become a way of life which is second nature after a while. I have never had a blockage not to say I won,t!! and my last leak was 2 years ago, their again I could have one before bed time. As for the hernias care has to be taken and heavy lifting avoided. exercise a support will be a help.

ileostomy 31st August 1994 for Crohns


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Blaze
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October 4, 2018 11:35 am  
Posted by: john68

Hi Blaze, Am only as we all are here too happy to try and help. On those questions. Leaks yes they can and will happen, most of the time you will get a warning and get time to sort. A night time leak can be the worst as of course you are not aware until its way to late. Yes most ostomates will get up during the night to empty. Blockages well certain food cause problems and we have to make sure to chew or prepare in a certain way. This all does become a way of life which is second nature after a while. I have never had a blockage not to say I won,t!! and my last leak was 2 years ago, their again I could have one before bed time. As for the hernias care has to be taken and heavy lifting avoided. exercise a support will be a help.

2 years with no leaks sounds amazing but I do wonder how much effort it takes to prevent it for so long? Chewing properly is a little bit of an issue for me because my teeth aren't perfect but I guess I will have to find a way to work around that/solve that issue. It seems I won't have a lot of good night sleep then :(


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john68
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October 4, 2018 11:44 am  

When an ostomate finds a pouching system that works for them its a simple enough routine to achieve a good wear time. Sleeping well lots of folk ostomates or not have to rise during the night. :-) 

ileostomy 31st August 1994 for Crohns


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Bubbles
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October 4, 2018 11:47 am  

I have an Ileostomy and love it. It's giving me my life back. If I were you I would get an Ileostomy and remove EVERYTHING down below . Get sewn up and remove any chance of something bad growing down there. This will give you peace of mind. Yes you still have the stomach issue to keep and eye on. But to me living constantly stressed out about what could be happening down below would drive me nuts and steal my joy.  

I have my Ileostomy for over a year and have never had a leak. My skin around stoma is perfect. It can be done . You find products that fit you and develop a routine that meets your needs. 

Get the very best surgeon you can . Are you in the USA.? 

Wising you all the best, Bubbles 


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Blaze
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October 4, 2018 12:09 pm  
Posted by: john68

When an ostomate finds a pouching system that works for them its a simple enough routine to achieve a good wear time. Sleeping well lots of folk ostomates or not have to rise during the night. :-) 

Hopefully, if I go with ileostomy I will find a proper pouching system as well. Yeah, you are right getting up at once should be alright. I realise I might want to much and I have to accept that my life has to change to a degree to stay alive. I hope I won't have to get up more often when the stoma/intestines settle.


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Blaze
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October 4, 2018 12:19 pm  
Posted by: Bubbles

I have an Ileostomy and love it. It's giving me my life back. If I were you I would get an Ileostomy and remove EVERYTHING down below . Get sewn up and remove any chance of something bad growing down there. This will give you peace of mind. Yes you still have the stomach issue to keep and eye on. But to me living constantly stressed out about what could be happening down below would drive me nuts and steal my joy.  

I have my Ileostomy for over a year and have never had a leak. My skin around stoma is perfect. It can be done . You find products that fit you and develop a routine that meets your needs. 

Get the very best surgeon you can . Are you in the USA.? 

Wising you all the best, Bubbles 

You pretty much described my initial feeling/idea, I could go with a J pouch but then polyps can develop there too aswell as in the rectum/rectal cuff and the rest of the issues which might come with the internal pouch like pouchitis, cuffitis and many more problems which aren't guaranteed but possible... and of course more surgeries which I am also against. BUT it is very important that I can live a full life or at least something very close to it, I am only 35 years old, I want to work as I did before (I am a programmer so sitting all day..), gardening is a thing in our family and I would like to be able to do that too, I want to be able to travel with my family, go to movies or a to a nice restaurant and things like that and for a while I thought that will be impossible with both the internal and the external pouch because of the possible issues with them and if I am worried that I either soil myself because my J pouch is not behaving or that my external pouch leaks or falls off, after a while I might end up at the same point as I am now, that I am afraid of going outside and I hate that my illness made me this way. And if I have to worry even about nights, then I might end up not being able to sleep either so that is why these things worry me a lot but John and you gave me a little hope with your answers, thank you!


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Blaze
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October 4, 2018 12:30 pm  

Bubbles I forgot to answer your question, I am living in Central Europe, not in the USA.


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john68
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October 4, 2018 12:47 pm  

Hi Blaze, I cant give you all the answers to a difficult decision, but I can tell you a life lived with an ostomy can be a pretty darn good one. You say English is not your first Language! well yer better than me and its mine :-) 

ileostomy 31st August 1994 for Crohns


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VeganOstomy
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October 4, 2018 1:23 pm  

Welcome to the forum, Blaze (and thank you to the members who have already replied!). 

Thank you for sharing your story - choosing between a stoma or j-pouch is a common dilemma for many, so know that you aren't the only one who's had to make these decisions. 

I've never had the option to have a j-pouch due to the nature of Crohn's disease, but I what I can add is this:

  • No surgery is without risks. Some ostomates have zero problems, while others have many; some j-pouchers have zero problems, while others have many and end up having an ostomy anyway.
  • Nighttime bathroom trips can still happen with a j-pouch (some may have more of them vs. an ostomy), and j-pouches may still lead to incontinence. 
  • Most ostomates who have a properly managed stoma have a very good quality of life; the key is to make sure that things are well managed by using the right supplies, being aware of risks, being in contact with a good stoma nurse.
  • While ostomates may have some things to worry about (i.e. blockages), j-pouchers also have to worry about things like "pouchitis", frequent bowel movements, "butt burn", incontinence, etc.  Many times these things are temporary or only need to be worried about soon after surgery, but sometimes they are ongoing. 

I think it's important to get as much information as you can from your surgeon. We all have different experiences, but our unique situations may introduce variables that need to be accounted for. 

Please feel free to continue to ask questions and look at all of your options. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Blaze
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October 4, 2018 1:56 pm  
Posted by: john68

Hi Blaze, I cant give you all the answers to a difficult decision, but I can tell you a life lived with an ostomy can be a pretty darn good one. You say English is not your first Language! well yer better than me and its mine :-) 

Thank you very much, I am trying my best! :)


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Blaze
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October 4, 2018 2:10 pm  
Posted by: VeganOstomy

Welcome to the forum, Blaze (and thank you to the members who have already replied!). 

Thank you for sharing your story - choosing between a stoma or j-pouch is a common dilemma for many, so know that you aren't the only one who's had to make these decisions. 

I've never had the option to have a j-pouch due to the nature of Crohn's disease, but I what I can add is this:

  • No surgery is without risks. Some ostomates have zero problems, while others have many; some j-pouchers have zero problems, while others have many and end up having an ostomy anyway.
  • Nighttime bathroom trips can still happen with a j-pouch (some may have more of them vs. an ostomy), and j-pouches may still lead to incontinence. 
  • Most ostomates who have a properly managed stoma have a very good quality of life; the key is to make sure that things are well managed by using the right supplies, being aware of risks, being in contact with a good stoma nurse.
  • While ostomates may have some things to worry about (i.e. blockages), j-pouchers also have to worry about things like "pouchitis", frequent bowel movements, "butt burn", incontinence, etc.  Many times these things are temporary or only need to be worried about soon after surgery, but sometimes they are ongoing. 

I think it's important to get as much information as you can from your surgeon. We all have different experiences, but our unique situations may introduce variables that need to be accounted for. 

Please feel free to continue to ask questions and look at all of your options. 

VeganOstomy, thank you for answering me, your site and your videos really gave me a lot of help and what you are doing for all the ostomates out there is amazing!

You said J pouchers also have to worry about other things, does that mean J pouchers also experience blockages just like ostomy patients?

I know J pouch can bring a whole lot of issues into one's life if it goes wrong but if it works it could be almost like before the illness. That being said FAP would more than likely attack the pouch and the rectal cuff so maybe I would get 5-10 maybe 15-25 years out of the pouch but at the end, it is very likely that it would either fail or would have to be removed as far as I can tell from the extensive research I did. I also believe because I have hundreds upon hundreds of polyps in my large intestine and a good amount in my rectum too that I am at a very high risk of developing new ones if I get a pouch and this is one of the main reasons me and my partner are leaning towards the ileostomy. Going through finding polyps in my bowel once was hard enough on me and my family I do not want to fight this all my life anymore then I have to. What I am trying to say is that I will have to worry about my stomach maybe even my small intestine (let's hope not), add a J pouch and a rectal cuff to it and I will always be in fear, that is just too much, at least it seems to us that way. But then what if... it is a very hard situation and it looks like there is no good choice. :(


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Robert
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October 4, 2018 2:11 pm  

Hello Blaze welcome to the group . I read your story sounds somewhat like mine . I have an Ileostomy which I received 2 years ago  the reason for mine was UC . My surgeon also told me about the J-Pouch as a choice but he actually told me there could be complications with having it as failure and chance of another surgery etc . He also of course told me about having the Ileostomy surgery and he really leaned that direction . So 4 years ago I had my colon removed and my small intestine hooked straight to my rectum (sorry can't remember the actual name of that type surgery) but I did not have a J-Pouch it just went straight thru to my rectum . But after still having to go 15+ times a day and doing that for 2 more years . I with the help of my wife (and her total support) made the decision to have most of my rectum removed and received (Norman my  stomas name now) my ostomy  yes it was a hard decision for me too . I was told I would no longer be able to eat different things that I like to eat and I am not a vegan either and don't eat much for veggies so my choices would be limited if I didn't change my diet . And they said I wouldn't be able to lift more than 25lbs and for the things that I am used to doing this was nothing and it all scared me thinking my life was going to change a lot . But 2 years later I eat whatever I want form corn to hot spicy things  that most people wont even eat haha oh and yes Beers are no problem either Lol . I like you said had to adjust to not sleeping on my belly but you get used to it and I do get up 2-3 times a night to take care of it and pee anyway so not a big deal either . Lifting wise they were a little off too granted I am not a heavy weight lifter and as always I still am careful about how I lift things but . I just finished cutting down and removing (digging) out the stumps of 2 - 16 Foot tall  Palm trees from my yard . And knock on wood I have had no blockages at all did have a couple leaks till I got it all figured out but part of the process I guess . As for the heat thing I live in  the desert temps up to 120 and higher do happen here but so far no problem there either . Have to say I am 60 and retired but I am outside a lot heat doesn't stop me . I dealt with my UC for 6 years before my wife convinced my to have first surgery and of course my Doc also told me it was time to get rid of colon before it caused any worse problems . But know that I have my Ileostomy my life has improved and gone to pretty much normal . Yes I did not want it and sometimes I get a little tired of things and it takes some getting used to but actually . I am glad I did it ! I can't tell you which way to go with your decision of course that is up to you .

Sorry I was so long winded here hopefully it helps you in some way .Good luck with which ever way you decide to go .

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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Blaze
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October 4, 2018 2:28 pm  

I have to be honest, I expected way more negative comments from ileostomates, I am kind of surprised.

Robert, thank you for answering I really appreciate it!

How did you manage not turning on your belly while sleeping? I am a heavy sleeper so I am kind of worried that I will turn on my belly while sleeping and we are trying to come up with a way that forces me not to sleep on my belly when the time comes...

I do not mind whether the answer I get is short or long, I actually appreciate that you take the time to reply to me either way and so far I forgot to say so but I wish all of you, those who just read and those who answer alike the best! Thank you for being kind to me it really means a lot to me and my family and it does help!


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Robert
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October 4, 2018 2:38 pm  

Hey Blaze

I guess I kinda got used to sleeping on my back after my first surgery . And now I sleep either on my back or on my left side . I too can be a heavy sleeper but somehow between our little dog getting up to go too I just wake up and take care of my business at the same time . If you do decide to go this way it will take a little getting used to but you can do it I'm sure .

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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Blaze
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October 4, 2018 2:50 pm  

Well now that I am thinking about it with the illness I always have to plan ahead wherever I go be it work or even the grocery store which means I need at least an hour the very least to make sure I have no urgency to go to the bathroom and sometimes it takes 2-4 hours to feel confident enough to go anywhere so that means that I have to get up early to go to work. Getting up once or twice at night seems okay compared to that, I do not know how I will handle it but hopefully, it will become easier with time.


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Bubbles
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October 4, 2018 7:44 pm  
Posted by: Blaze

Well now that I am thinking about it with the illness I always have to plan ahead wherever I go be it work or even the grocery store which means I need at least an hour the very least to make sure I have no urgency to go to the bathroom and sometimes it takes 2-4 hours to feel confident enough to go anywhere so that means that I have to get up early to go to work. Getting up once or twice at night seems okay compared to that, I do not know how I will handle it but hopefully, it will become easier with time.

Yeah I remember those days of preparing 3 hours just to leave the house. Wake up early enough to eat  then poop , poop,  poop poop poop.get dressed ready to leave . Oh wait I have to poop again. Butt is  raw from wiping . Hemeroid bleeding itching all that fun stuff. Then you must decide do I where a diaper or can I just get away with a pad liner. Let's see while I look through the assortment of feminine items  I own even though I don't have periods. 😝😝😝😝 those were some crazy days. Y'all  all know what I'm talking about. Even the guys who used panty liners . You had your wife buy for you.

Get to where you are going first thing scout of the nearest restroom. Once that has been officially mapped out commence to doing what you went there for. Oh wait I fogot  I've got pooping on my mind. 

Now I wake up empty Bubbles ...Brush teeth and I am out of there. Chow baby 👋

Seriously though we must giggle at everything we have been through yet made it to the flip side. Life is good . I am back in the gym. Back to dressing up putting on makeup feeling feminine again. Bubbles has become spunkier than ever. 

Hugs to everyone, Bubbles 

 

 


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