Hey gang!

   I really just need to vent....a quick history for those that don’t know me...my last surgery, #37 (first one was due to a toxic megacolon almost 30 years ago), was November 16th. I had my 2nd k pouch removed and my 8th end ileostomy built, thinking it would be the answer to all my problems, biggest mistake of my life!

  My k pouch nipple valve was leaking, the valve twisted beyond repair. I could have just lived with never knowing when I’d soil myself (usually once a week, in bed, but sometimes in public during the day), or, take a chance and have it removed and go for my 8th, and final ileostomy....and stupid me, not afraid and over confident in my bodies ability to heal, decided to go for the surgery when I should have left well enough alone (FYI - over the years, they removed my rectum and stitched it shut permanently, removed my entire colon and most of my small bowel, leaving me with only approximately 5-10% of my entire GI tract). 

  The surgery went well, or so I thought. I was hospitalized for only 8 days post op, and sent home, despite my high stoma output, I assumed it would settle down as it has with every other surgery....nope! I was discharged on a Tuesday, but rushed back to the ER Saturday due to an obstruction caused by adhesions and a piece of chicken that got stuck (I chew the hell out of my food). I was readmitted, until they were able to clear it with a scope through my stoma, and was greatly relieved, not knowing this was just the beginning of hell.

  I was discharged on the following Wednesday, noticing my incredibly high watery output, I was apprehensive, but was assured it would improve, sure, NOT! desperate to start my recovery, a few days later, on Saturday, we went shopping to my favourite store, the Bass Pro-shop, still feeling sick, but wanting to break my cabin fever. As soon as I walked past the turn style, I was struck with an abdominal pain so bad, I collapsed on the floor! So, back to the ER I went, assuming it was GI related, but discovered it was yet another kidney stone, 3mm, and sharp as a diamond...if you’ve never had a stone...picture the pain from every surgery you’ve had, and multiply it by a factor of 100, it’s pure agony, so, another 3 days in the hospital, until I was able to pass it (it was too close to the bladder for cystoscopy). But fine, it passed, and I went home again......but then.....

  yep, the next Saturday another partial obstruction, took only 2 days this time to clear land I was back home...by this point I was roughlyonly 4 weeks post op, give or take, but thinking the worst was behind me...ya, right! For the following 4 weeks, I began to loose weight so fast, I went from a 34” waist to a 28” in 2 weeks, and lost over 40 pounds since the surgery. I was eating and drinking non-stop, trying to stay ahead of the fluid loss. No matter what I ate, from steak, to  every stool thickening foods available, my body turned everything into gallon of watery output every day, each day worse then the one before. I’ve alwasy wanted to be thin, but not like this, I couldn’t take in enough to replace what I was loosing daily. But still I had hope it would slow down at some point, until I finally stepped on the scale was for the first time in my life, saw “142.8lbs”. I’ve alwasy been on the stocky side all my life. I was 5’11”, but thanks to the DDD, and osteoporosis, im now 5’ 9.5” tall....

   it was uncontrollable, so my doctor ran a CT abdo and bloodwork. CT was ok, not great, but ok, but the bloodwork showed severe dehydration from the fluid loss, so my doctor calls me last Wednesday and says “check in with admitting at 2 on Friday, I want to observe you and give you a lot of IV hydration, and see if we can stop the fluid loss and find the cause”...it’s now Wednesday morning (6:20am to be exact, I haven’t slept for more then 2 hours since I got here) and they’re still no closer to an answer! I’ve never felt this depressed over my diseases, but I’m beginning to loose all hope. They’ve literally tried everything, and it’s only getting worse. Each day I’m getting a minimum of 7 litres of IV saline, yet the weight loss continues....the only difference is, I’m bloated like hell from fluid retention in my hands and feet from the IV.

  Finally saw the CT report, that stated “cause of fluid loss not available, but there is far too much scar tissue and adhesions for an accurate reading, follow up MRI recommended”. They’ve recorded all of my input and output, and it’s a 3 to 1 ratio, meaning, for ever 1 unit I take in, I’m loosing 3, and the doctors don’t know how to stop it. You know, generally, I can take a lot, and I have over the last 30 years, but this is the very first time since my diagnosis when I was 20, that I totally give up. You wouldn’t believe the battles I’ve fought over those years, but I alwasy had hope to allow the fight to continue, but this time I’m at a total loss, and have zero hope, not even TPN will work.

   Sorry for the venting, but I’m only praying one of you have a solution my doctors can’t find...I’m just not sure how much longer I’ll be able to keep this up before I completely loose my will to live, and I’m getting there fast. Thanks for listening, and I’d greatly appreciate any advice/tips you may have, I’ve tried them all to no avail...

  Thanks again, love you guys,

 Eric 😫😫😫😫😫😫😫😫

Original Post

Ps - must give credit where/when it’s due, to the absolutely wonderful staff here at Mount Sinai Heath Syetems in Toronto. They’re incredible, kind, compassionate, even loving! I’ve been here so many times they all remember my name, and I theirs...when your this low, I must be thankful for the smallest positives I receive.

Seems you went through hell and it's good to vent. 

I only went through 1/10 of what you went through in a short period and I did give up. But my body wouldn't let me go. My mind wanted me to go. So I know partially what you are going through. Partially  

I can't give any advice. Except to be strong and hopefully you'll come out in the right side like I did. It's a terrible feeling of defeat.  But my answer was where you are. 

Get the end ileo and all will be ok  Fortunately for me by doing that it ended all my pain and problems. I did say fortunately.  But I didn't go into it thiking that way. I was going in thinkin the worst. I do mean that. I fought it in my mind up to the point on the table going into surgery. I didn't want to go through all that pain again. But it was either that or die a slow death which is what I was in the process of doing.

I feel for you. Just don't give up.  

Richard. 

Eric this is so sad to hear. You should know that there are so many person/ people that have these types of surgeries and the specific IBD disease with the underlying auto immune disorder that suffer. There are several medical studies on methods, post op complication , quality of life ,morbidity , and completed suicide rates.  It is very sad that so many patients ; persons have suffered on their own . Isolated by medical protocols` narrative that frowns on disclosing information that can help people in dire health ordeal find some solace that they are one of many. You sharing and being a witness to others especially to those whom are needed it the most has meaning that is realized . 

I  do not understand or, it is logical that you would be able to absorb reasonable amount fluids with only 5-10% of your GI track in your body.  I am not very smart and, I am kinda slow, I have a hard time keeping up with a sun dial. I am sure that your fellow  followers here  wish we could help beyond what we are capable of.  Do you think or reason that you could with advise from the doctors that you could soak in a warm tube to hydrate your epidermis. I guess it is the largest organ in the human body.  I would think that there`s no comparison to the IV drip although It may be a reverse feed back loop from the body though getting the skin soaked or just a nice warm soaking.   

You are already blessed my friend .   

    

  

Hi Eric 

Your on a totally different level of 'awesomeness'; showing incredible perseverance and determination; keep being positive, things will get better.

Could this be the reason that your losing fluids; there isn't enough small bowel to absorb the water?

'removed my entire colon and most of my small bowel, leaving me with only approximately 5-10% of my entire GI tract'

Also not great, but nutritional drinks might be the way forward; I'm talking about a few months. That might help to build yourself up.

 

Eric ; It is good to know and especially hearing from you about  how much the staff at Mount Sinai Health mean to you. In the States it can be the same and also, it can be completely different with the health system being primarily private insurer driven.  When you got time in the future let us hear from you . 

 

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