Health Update and Temporary Goodbye

Howdy gang,

Sorry, been away (as it seems is usual). Does it upset you when people who are active on here disappear without a trace? Sort of makes you think the worst, doesn't it? Well.......I'm about to disappear. For how long I don't know....could be a month or two or maybe forever........we have no way of knowing these things. But since it bugs me when folks simply drop offline......because I DO think the worst........I'm posting this to let you know I might not have time to pop in here and chat. Yeah, it's health related........and you know how that goes. Hope for the best, but expect the worst.

The short (long) story is that because I was short gutted 12 years ago, life has been pretty good.....but I've been waiting for the other shoe to drop, so to speak. And it may be dropping. After my surgery and ostomy back in 2014 I was on TPN for a year to get my weight back up and give my bowels time to adjust to their new role of absorbing different things in different places. I weaned off TPN in about a year, to the surprise of everyone, and my weight was stable. So life was good. And it stayed good, except for some minor excursions into the wacky world of dealing with an ostomy.......but that was all small potatoes. So I've been grateful for getting those 12 years. Had my operation occurred 10 years prior to when it did I'd be pushing up daisies by now, as the surgical technology and the whole TPN thing has advanced that quickly.

Everything was pretty good until this past May, when for no reason that I or anyone else can determine, my weight started dropping. And I mean fast! Like a pound or two a day with no changes in my eating habits, hydration or lifestyle. After my weight dropped to a lower limit I set in my brain as a 'not to decrease beyond or go into full panic mode'......I called in the big guns.

So I've been working with the transplant team at Georgetown, one of the nation's most successful transplant groups.........but not for a transplant, just because they deal with short gutted folks the most, and had the most experience with that condition. We've done all the testing, poking and prodding, but are still coming up empty. Scoping shows my bowel looks fantastic, and other than a fat absorption issue that's normal for us short gutters.......we have no idea what's going on. My stoma does need a revision, which I've scheduled to happen in a few weeks, as the very tip of my stoma has strictured, but I dilate that every morning, and although a pain in the ass, it's manageable. There's no indications of active Crohn's disease anywhere, and the stoma thing looks just to be caused by stress to the bowel. Yeah, I rolled my eyes at that one too........but there's nothing to indicate anything else is causing it. In the end it will be a piece of the puzzle we just don't understand today, but will make us wonder why we didn't. Seems that damn hindsight really is 20/20.

But my weight keeps dropping and we can't explain why......or correct that. Motility meds dosage has no effect, nor does any dietary changes, such as restricting fat intake of stopping all sugar intake. So at this point I've sounded the alarm and it's all hands on deck, which means I need to direct my full attention to trying to stay alive for as long as I can. My boat is takin' on water, so there's not time to stop and chat.........if you know what I mean. Of course, if things change, or I hit a lull because the Reaper is late for our appointment.........I'll shout out. I haven't picked out my casket yet, but I did see a very interesting video the other day about something called a "green burial". I'll put the link at the bottom if you dare want to take a look. It sounds weird at first, but the more you think about it......and consider what the Bible says about cremation....it sort of makes sense. Why postpone the inevitable? Anyway, I'm not ready for that, but I think you will find it interesting regardless.

So I'm about to head down a path I've been dreading, but knew would eventually have to be traveled. They say this kind of stuff makes us stronger, assuming you survive. I guess we'll see. But I'm not fooling myself here. The body is a wonderful machine, and when you remove large parts of it you upset a very delicate balance. The medical community works hard to find ways to improve that imbalance, but some rivers are just too wide to cross, and eventually any bridge that's built will eventually collapse. After all, there's no foolin' Mother Nature! I always liked that commercial as a kid. But seriously, we really do take for granted what our bowels do in our daily life, and if you research it a bit you'd be amazed at all the processes that are engaged, and see how upsetting even the smallest part of one of those processes can bring the whole house of cards down.

Look, I have no idea how this will turn out, but we've got a few things left to try, so the journey continues. I just want to take a moment (or 10) and let you know why you won't be seeing much from me in the way of posting unless things do an about face and start getting better. With that said, I just want to say thanks for all the info, support and friendship from you guys on here. Opinions differ at times about different things, and that's ok. What's important is the underlying bond that brings everyone to this site in the first place.........and you know what that is.....we care about each other. So thanks for that!!! Hopefully I'll be back in a bit and have a few good stories to tell. If not........well......let's not go there just yet. But you know what I mean. Here's that video I was talking about

https://www.youtube.com/watch?v=YsgbWE4x6Js

Take care,

;O)

Bob

Take good care, Bob! Wishing you all the best for a positive outcome.

Abe/Paul

Hi Bob, sending you a huge hug from the UK. You'll be in my thoughts and I await your return. Take care, Michelle xxx

Take care, Bob.

And hopefully what you will be able to do! You certainly have a huge cheering group on this website and I for one enjoy your postings.

Get well and return - Hugs, jb

Not to worry, Bob, they will find a reason for the weight loss, and you will be fine. All the best wishes.

Sending positive thoughts your way. Hope they find a solution.

Hello Bob.

Firstly, let me thank you for giving us the lowdown on your present situation. So often these things take us by surprise and we don’t have enough time, energy or motivation to put them into words.
Your posts are always a pleasure to read and I look forward to reading many more of them when this phase of your journey is done and dusted. 
I did watch the video and agreed wholeheartedly with the sentiments expressed, as my own thinking and preferences are along much the same lines.
Each year I grow oak tree saplings to plant out in the wild. However, this year I was delighted that my granddaughter was interested enough to ask if she could ‘have a go’. I discussed how I used to just poke the acorns into the ground along my walks (Each year, one for every year I have lived)  I explained that I did not think that the success rate doing it that way was much more than  2-3 percent, However, when I put the acorns in a large flower pot  the success rate shot up to about 60 percent. She was fascinated with my experimentation and wanted to try this for herself. I showed her what I thought would be the best method and she put some of the acorns one way up and others the opposite way around.
In a matter of weeks, every one of her acorns was sprouting a tap root. After congratulating her on getting a better success rate than her granddad, we discussed where she might plant the saplings when they grew bigger. I told her that I would feel honoured if she would save one to grow above me when I was dead and buried, so that my life and death would feel as if it had an ongoing purpose.
She seemed delighted with this idea and we planned that, as the saplings grew in their respective pots , we would, ( together) select which one would make the best tree for that purpose.
I hope that this initial discussion will be just the beginning of an ongoing, open and honest conversation about life and death issues, long before I actually die. However, none of us know about the timeline for these sorts of events so, from my perspective, it’s best to get these conversations underway asap. 
I hope that I will still be around when you have overcome your present hurdles and, if I am, I look forward to reading your own ongoing story.
I hope all goes well for you.

Best wishes

Bill

Bob, wishing you a very positive outcome. I do hope the medical team will be able to treat you successfully

Take care.

Best of luck, Bob!

Hiya Bob:

I will be thinking of you and praying that God will enable the docs to figure out what's going on with your body, and more importantly, will be able to fix it. Peace to you my ostomate brother.

Best wishes for a positive outcome, Bob. Hope you can return soon. You will be missed.

Bob, you may not be on this forum for a while but everyone will be thinking of you and wishing for answers to your problems.

Hi Bob, wishing you good luck and a healthy outcome.

Sending loads of love your way.

Have read a lot of your posts, and have always thought to myself "that guy's got his shit together". Sorry this thing is throwing you for a loop now, but think if anyone's got the stones to get through this you do.

Good luck!

Hi Bob - Wishing you the very best for a positive outcome! You're a real asset to this website and I've always enjoyed your posts. You have a real talent for writing and when you get through this ordeal, you should write a book - seriously! Count me in in your support group. We'll all be waiting for updates. Good luck!!

Hang in there, Bob, like you can, and keep a positive attitude. I've always admired your courage and ability to handle anything life throws your way. I know you'll get through this, too. All of us who have enjoyed your posts over the years will do our part and send well wishes and prayers. There just has to be strength in numbers. And when you pull through this ordeal, you may just have to visit your northern neighbors. Keeping you in my thoughts during this holiday season, K.

I'm a bit late here as I'm not on much recently but I want to say that I have appreciated the time, effort, and knowledge you put into your posts. They are always informative and useful. In fact, I've copied and pasted a couple of them to a file for future reference. For that information, I am grateful. I'm sorry about the issues you're having. I've been down to 114 lbs and know that you're not having a good time right now. Good luck, Sir. Best possible wishes.

Sending prayers that the doctors will be able to fix whatever is ailing you.

Wow Bob! Holy smokes!

Can't say anything more than what's already been said.

Godspeed. And make sure you have your emergency contact keep us posted. Don't give up. - Warrior

I hope you still check in here and there to combat the boredom of your hospital room. We will be here to lift your spirits and serve as a sounding board.

Heck, you just may need some TV/movie suggestions for a hospital binge session. So I'll send you with a couple and you can reach out and report back with reviews, or requests for more.

Peaky Blinders on Netflix

Bad Sisters and Ted Lasso on AppleTV

The English on Amazon

Handmaid's Tale, Atlanta, and Letter Kenny on Hulu

Your Honor, Wakefield, and The Good Lord Bird on Showtime

Game of Thrones and House of Dragon on HBO

HANG IN THERE!!!!!

So thoughtful of you to reach out to him. His support group on here is sitting in our waiting rooms....awaiting his return.

Hey hey hey... anybody home?

First, thanks for all the warm wishes and replies!!! You guys rock! I went back and re-read what I wrote and have to confess that I didn't mean to make it sound so gloomy and doomy... so sorry for that. What I was really trying to say was that I didn't think I'd have a lot of free time to jump on here and chat, and didn't want anyone worrying about me or thinking I was blowing you guys off. So I'm happy to report I'm not dead yet. Not even close. Knock on wood. (Although we're all a bit closer than we think, wink, wink)

I've done a lot of experimenting with foods and fats/proteins/carbs/calories/etc., to learn what my body liked and didn't. As an update... I've got my weight to stabilize at around 170 lbs, about 10 lbs below where I really want to be, but stable is good, so I'm not complaining. My stoma's stricture has severely limited what I can eat... well not what... but how big a piece of food can be and still fit thru my stoma. So I currently blend everything into a liquid or smoothie to ensure nothing causes a blockage, and so far so good. Christmas ham and mashed potatoes blended into a smoothie has a very interesting taste!!! But I am restricting total calories a bit because of the blending thing... so I think my weight will increase once I can eat normally again and my stoma is at its full inside diameter again.

Having an ostomy is like having a window right into the center of your digestive tract... which is something even the medical community doesn't really have. And we can use that to our advantage in instances like mine. I wrote a while back that I found the cause of most IBD and autoimmune issues with the bowel... but never got around to tell you what that was. I think now is as good a time as any. The thing you want to avoid like the plague if you have bowel issues is SUGAR. Specifically, processed table sugar and high fructose corn syrup. I learned about this from a doctor friend of mine who was monitoring clinical trials of a dietician friend, and the results of the trial were pretty conclusive. Now you might be thinking... I eat sugar all the time and I don't have bowel issues. Yup... you might, as everyone is different. But consider that the sugar thing isn't a direct cause and effect kind of thing. Well, it half is. Sugar is known as an irritant of bowel tissue, but there also seems to be a cumulative component to it as well. AND it appears (from watching my own stoma react) that sugar irritates the bowel very quickly... but stopping all sugar doesn't result in the inflammation going away as quickly as it came. It lingers. So if you eat sugar you inflame the bowel walls. Then if you don't eat any sugar for a bit you'd think you've given the bowel time to recover before you eat some more... but that's not the case. It remains inflamed for some time... and then that next dose of sugar comes along and you get a bit more inflammation... and so on and so on until you have a serious problem. So if you have bowel issues take a vacation from sugars and see if things don't improve. And read labels because you'll find processed sugars and corn syrup in EVERYTHING these days... really. So your bowel never gets a break and the inflammation just keeps accumulating. We have over time poisoned our own food supply for the sake of profit. And that's catching up with us now, as you look around and see that everyone is having medical issues of some sort. Obesity and diabetes are so widespread... and so easily curable with diet alone... but the medical community will never let patients know that... for obvious reasons. Our only recourse really is to get smarter ourselves, and luckily the information is out there if we take the time to look.

So the sugar thing... my case in point is that I totally eliminated sugar from my diet when my stoma started stricturing. At the time it was around 8 mm in inside diameter. It stayed that size while I was sugar free. But after trying just about everything else diet-wise to try to reverse my weight loss... the only thing left was to start eating sugar again. So I did that starting about two weeks ago, very slowly to start. I also didn't go nuts and eat LOTS of sugar, but I was focusing on calories and protein primarily, not carbs (sugar is a carb). I started gaining weight. But my stoma stricture started getting worse. Now it's about 2.5 to 3 mm in ID when I start dilating it each morning. And it takes me a good 20 minutes to get it dilated back to 8 mm. And for anyone who thinks there's no nerves in your intestines... let me tell you that you're VERY wrong. The pain is almost unbearable when you stretch your intestine beyond a certain point. It's designed to stretch to allow crap to move thru... it's not until you try to expand it beyond that maximum amount that you feel the pain. And feel it you will. You can knock yourself unconscious if you push it too far. So, there are definitely nerves... and a lot of them... all thru your intestine. I just have to keep my stoma open for another week and I'm good to go. Easy peasy... I think. O(

I'm scheduled for surgery for that stoma revision first thing on Tuesday morning, and if they can just cut my stoma loose, pull it out a few centimeters, snip off the strictured tip and sew it back to my abdomen... I should be out of there in just a couple days. If things go sideways and they have to open me up... I'll be getting an all-expense paid stay in the hospital for at least a week. They called me yesterday to remind me to bring my own toiletries, as there seems to be a slight shortage of such things in hospitals these days. Hmmm... I'm getting charged 30K a day and I have to bring my own toilet paper??? Good thing I don't use any!!!

Since I last wrote I've been studying how the digestive system works. It's really quite fascinating, if not a bit convoluted. But the take-away is I've learned how the process works and what and where you check specific things to figure out what's working and what's not. So I'm now crossing off the testing we've done to see what's left... and will then focus our attention on those areas to see what's what. I'm learning a lot, and this information is really pertinent to many ostomates, which makes me surprised we're not told about this stuff when they slap a shitbag on our waist and wish us good luck. If you get time, or are having bowel/digestive issues... do yourself a favor and go learn about the process. You'll be glad you did.

Ok... I'll pop back in as I can, and thanks for all the warm replies!!! You guys are great!

Back in a flash... or two!

;O)

You know who

Good to hear you've found out what was causing the weight loss, totally agree about the sugar thing, causes all kinds of inflammation in all parts of the body.

I was told by my GP years ago to "steer clear of sugar and make fat your friend!" But not low-fat/no-fat food because you guessed it, to make up for the lack of fat (and lack of taste) they put a shitload of sugar in it. I always check the labels, but try to just eat whole foods that don't need a label - even better - "don't eat anything your grandmother wouldn't recognize".

Good luck with the surgery, hope your future small bowel is stricture-free!

Very informative, Bob - thanks! And thanks for checking in! JB

So good to hear from you, Bob!

This is the post!

Thanks a lot, Sally!