We all have to do it… just some of us do it a bit differently than others… This is a post about eating or getting nourishment so you won’t starve to death …and returning the extras or what you don’t use any more out of the body… better known as pooping…. or what in my family is often referred to as the input and output of the human body…

My wife and I sometimes have the strangest conversation about this subject BTW… and we use strange/weird words or language to express us on the subject….  A lot of the time we think we are very funny, laughing and giggling like school girls…  we know our place though and don’t do it everywhere…   Unfortunately I can’t really give you any good examples of the words we use as they don’t really translate that good into English… but if something pops in to mind… I’ll try to include it…

I realize that not everyone feel comfortable when that particular subject… poop…is brought up and may probably find it quite disgusting or gross even…   If you are one of those people that are easily grossed out by a little poop talk consider this a warning and don’t go any further with this reading….

When I met my wife over 30 years ago… and shortly after that most of her brothers and sisters but she is one of 14 siblings. I had already met her little brother Chris.  He, like the rest of his brothers and sisters, was one of those people who always had the need to get people laughing… Some people may have found his jokes gross or even childish as they were often about stuff we all do but never quite talk about all that too much… like burping, pooping or farting…   I admit that I had a hard time adjusting to this sense of humor and was quite embarrassed when Chris started off especially when we were among other people… but I did sort of play along maybe just to keep my cool as I was desperately trying to fit in to the social side of things at that time…  but mostly just by laughing or… at least… pretending it was funny…

As a child I was brought up to stay silent about everything that had to do with the subject (well most subjects actually) …that is if you can call it upbringing …being punished physically and/or emotionally to say or do the wrong thing…  Anyway… to me this subject was kind of off limits and really it stayed that way for a long time…  maybe too long…  except maybe when Chris was around… and then for the humor side of it only…

I say too long because since that particular subject… my poop… was a sign that probably I should have taken more seriously…  I was however more concerned about keeping it a secret but also not having to deal with that subject with a stranger …a doctor… but I was also terrified of doctors of any kind… still am in many ways…

I have had problems with my digestive system as long as I remember… I know some of it may very well be caused by my mother who had pleasure of torturing me in many different ways…  making me eat all sorts of things that were not meant for eating or starving me by not giving me anything for days… I remember waking up in the middle of the night having to run to the bathroom with diarrhea and even not being able to make it… I remember the most painful constipation lasting for quite some time…  and having to deal with horrendous physical injury for months (even years) from the age of nine….consequences from being anally raped by a grown man….  and I am leaving out more that happened… things that were done to me…

It wasn’t really until 2001 or maybe 2002 that I couldn’t stay away from going to a doctor …and then at first it was a psychiatrist…. I wasn’t eating enough and I couldn’t give any logical explanation for it…   Yes I did have lots of issues with food… I didn’t want it in my mouth… For one… it triggered memories of events I didn’t want to remember…. and at times…when I felt ashamed and/or hated myself…. I didn’t feel I deserved it and what I didn’t tell people… it was painful once it was in my body… especially if it was left there but if I ended up eating I felt I had to throw it up as soon as I could….   that was to me at the time a lot less painful… and I was pooping blood… I had either diarrhea or couldn’t go for days….

Around that time I was very thin… dangerously thin … malnourished and weak… was dehydrated a lot…. I was also very sick mentally… but being an expert of acting as everything was fine I was able to keep a lot of what was going on inside of me a secret… not all though…    I don’t have any memory of it…but my wife told me later that in those years I talked about food being spoiled or I thought I was being poisoned… or about the food “eating me from the inside out”…  However that was taken as just another excuse for me to justify my self-destructive behaviors…

I was diagnosed having Anorexia (purging type) and was getting professional help according to that diagnosis… I was told that I would get permanent organ damage if I’d continue to do this to myself… and there were even signs that it might already have happened…  That gave me a bit of a scare so I wanted to at least try…

Mentally I did make some progress and even though I really wanted to change things around and try to eat properly… I was not ready to come out with my “pain and poop” problems… I couldn’t think of the idea having to talk about that to anyone…   I started eating…. baby steps …it went alright at first… but I was nauseous all the time… and I was in pain… felt bloated and as if my stomach was going to burst anytime I ate something…. Then after a while I couldn’t keep the food down… and it came up no matter how hard I tried to keep it in there…  Of course my doctors thought I had just fallen back to my old habits and was having a relapse in my attempt to recovery…  This turned out to be the first step for me to talk about my physical aspect of things… I told them I couldn’t keep the food down… I tried to explain what it felt like but no they didn’t believe me… not at first… and I really do understand why….

This is when I got my first tube… an NG tube that went through my nose down to my stomach…  That BTW was horrible time… That tube brought up many painful memories from my childhood…. The whole time it was in was like an endless flashback or being exposed to triggers constantly for weeks… I can’t for the life of me remember how long I had that tube… it felt like months… but I ended up throwing it up a few times… and that was not very pleasant thing to do and moments that I don’t really want to remember…

But anyway, when the docs I was seeing finally got what the deal was with me and NG tubes he wanted me to have a surgically inserted g-tube…  a tube that goes through my abdominal wall straight into my stomach…. and the ‘fun’ went on… more problems…  the ensures came up, my stomach couldn’t handle it…   and another type of tube… that would bypass my stomach …was placed… a j-tube…   That one worked for a bit… without too many problems but then my small intestine started to rebel and started going backwards among other strange things…. and finally ….what it seemed like them just shutting down…. more visits to the hospital…  and also somewhere in the middle of all this I was diagnosed with gastroparesis… severely ulcerated stomach and some more I can’t really name… I had to have an operation where large portion of my stomach and parts of my small intestine were removed…   I was still severely malnourished and underweight. In May 2004 they gave up on tube feedings and I was put on TPN or Total Parenteral Nutrition but with that I was given nutrition straight into my blood stream…  Like with the g/j tube it went well at first… even better than with the tubes as I was feeling much better not only physically but mentally as well….  I had to stop that when my already weak organs started rebelling…. and I was back on tube feedings and after a while I was also eating orally along with the tube… This was July/August 2004…

I had a hospital bed reserved in mid-August for a couple of test and procedures, colonoscopy, endoscopy, CT scan and more… but my body couldn’t wait that long…  I woke up one beautiful August morning in so much pain… Somehow I got out of bed but I could hardly stand or walk…  and I was sweating like hell… but still shivering and feeling cold at the same time… My wife called the hospital and they told her to bring me in right away….

That’s how I lost my colon, anus and rectum…. and gained a new “output” hole, my ostomy…   I can say ever since I was nine I hated the “output” hole I got at birth…   There really isn’t much more to say about that one other than that I don’t miss it one little bit… and I’m quite happy with my Ken/Barbie-butt.    Now what is that?… you might ask…  Well that is what you get when your butt is sewed up (no butt hole) and well like a Ken or Barbie doll though I must admit mine is not nearly as pretty as Barbie’s or Ken’s butts… however not nearly as bad as it was when it first came into existence…. but I have a feeling that when they got theirs it didn’t hurt as much when I got mine….  I won’t complain though…. Recovering from a major surgery is never fun and takes time and patients… and for most of us it won’t last forever…

As much as I love my stoma I would be lying if I said that having one is a dance in the woods… though for me, compared to my old butt hole it feels like that sometimes… Occasionally I’ve had to relay on my wife helping me to take care of things… especially during periods of severe depression or when symptoms of the schizophrenia get bad… For me the hardest part especially at first was to take good care of it…  I wasn’t exactly taking care of the rest of myself at the time either so there is no surprise that I had quite some problems with my skin around my stoma…  I had/have multiple scars that almost cover my whole torso including the area around the stoma so getting the bag to stick was quite a challenge… but with good help and patients it got easier….  I do get occasional “run-away” though but that’s just one of those things that happen…

Embarrassing maybe…. if it happens out there in the world or out of the safety of your home…   but no real harm done …except if you run into a prude who can’t respect diversity of human life… just remember it’s them who have a problem not you!

Another thing with leaks… For me… waking up in a puddle of poop is also one of the things my wife and I have to deal with…  We both like to cuddle so unless we would give that up (difficult when you do it while you’re sleeping) Sunna can’t escape this one…  Maybe unfortunately for her, I move around a lot while I sleep… something that I have always done I guess and I can’t really do much about it… but hey I used to sleep walk so maybe I will slow down once I get older…   I have woken up lying flat on my tummy with the bag squished under me… sometimes with poop all over the place… sometimes not…  It’s just one of those things and something you deal with when it happens….

My wife’s family has this thing about coming together and eat… where each family brings some food and share with the others….  It’s something they do very regularly and one of those things where I have had to be the odd one who doesn’t eat much or at all…   but even though my stomach can now mostly tolerate food at least in small doses…

I’ve written about some of this before or at least mentioned it a few times but I’ve had difficulty swallowing for a while… causing food to get stuck in my throat, or my esophagus or even going up, out through my nose or down my windpipe…   so I am still relying on tube feedings…. and may have to do that for the rest of my life…. I really don’t think too much of it… I can’t say that I have ever really enjoyed eating and if anything it has really been more of heartache than anything else for me…   I won’t deny it however that sometimes… and in spite of my mental/emotional difficulties in those kinds of situations… I do miss the social aspect of eating… especially going out to restaurants with my wife and kids… and/or sometimes… my wife’s family-get-together events….

I wasn’t going to write my gastro/colitis story in this post…  or not in much detail anyway… I was going to write about all of this in a much different way… but hey… this sort of thing happens quite easily with me….  And as I am writing this in MS Word it has reached 8 pages…at least if you count the picture….  so  I think I will just end this right here….

I’m not writing any description or info for those pictures BTW… but as I was going through my phone’s picture folder and throwing out stuff or moving to a different storage I found those lying around… I might even take those out as I don’t feel 100% comfortable showing the world my tummy like that in all it’s glory… but for now it’s there….

As always feel free to ask any questions you might have… or leave me a comment, an email or a message on Facebook…. I’d be happy to reply…. and all sorts of feedback is always appreciated…