Community Forums

By Request: My Bela...
 
Notifications
Clear all

By Request: My Belated Introduction  

  RSS

Tony
 Tony
(@ileostony)
Registered
Joined: 1 year ago
Posts: 229
May 27, 2019 3:20 pm  

Without going into too much detail, let me just say that in retrospect I suspect that I might have had my gut issues years before I was diagnosed with Crohn's. Fast forward to around late 1994, when I began to have the usual symptoms, the diarrhea, the urgency, the eventual onset of progressively worsening fatigue and other signs of iron deficiency and malnutrition.  Oh, and let's not forget a developing intolerance to certain types of foods. 

 

Not being able to see, I had no idea I was bleeding, and I didn't know enough to think anything of the simultaneously sickeningly sweet and almost acridly metallic odor that I began to detect when I went to the bathroom. Yes folks, I was losing blood with increasing copiousness, and I had no clue.  It wasn't until I really started to feel like complete crap that I remembered something I had heard in 10th-grade biology about a low blood count that I suspected that somehow I might be anemic.  Still, it was not until I was almost nonfunctional in my fatigue and running a fever to boot that I finally asked my mom to take me to the ER.  It was January 21, 1995. 

 

I received no less than 3 units of blood that very night to correct a hematocrit of 18 that should have been 45. This was 40% of a normal hematocrit for a boy of 17.  Yep, I was a geek even then and did the math even as I wondered just how much trouble I was in.

 

Fast forward again over the years, in which time I learned to tell the signs of a flare without having to see a drop of blood. My medications gradually lost their efficacy, though I did enjoy fairly long, though increasingly short, periods of remission. 

 

Finally I had to go on a biologic, no doubt much to the chagrin of my insurance provider. Humira worked wonders for a time but eventually also stopped working.  I went into a flare-up so severe that I began to wonder whether I would last long enough for another biologic to start working.  Hydrocortisone was not working in any form.  It was the fall of 2018.

 

While hospitalized for this latest bout of bloodletting misery, I had a colonoscopy done. Maybe it was that procedure that caused my perforation.  Maybe it was something else.  It really doesn't matter at this point.

 

I had been hearing about the possibility that I might need an ostomy of some kind since my diagnosis in 1995. It quickly became my worst fear where my Crohn's was concerned.  Said fear was realized on December 4, 2018.  I didn't have the opportunity to make a decision to have an ostomy in advance as an elective preventative.  It was either have the ostomy or die in the not-too-distant future. 

 

I had been having enormous abdominal pain that by that point had become chronic, and my brain was practically swimming in Dilaudid. One of the members of my GI team asked me if my belly was always so swollen causing this much pain with pitting edema.  He ordered a CT scan that revealed free air surrounding my guts, clearly indicating a perforation on the night of December 3rd.  By then I had been hospitalized for just over a month. 

 

While I understand that the surgeon was the one who performed the operation and is of no small importance to this saga, I ultimately credit the gastroenterologist who ordered the CT scan with saving my life. If he hadn't been the one doing the rounds for the GI team that day, I don't know what would have happened.  By the surgeon's estimate, if the CT hadn't been ordered, I would likely have died of peritonitis 2 days later.

 

Shortly after midnight on December 4th, my surgeon gravely advised me that I needed this operation to save my life and that there would be no way to reverse it. My religious beliefs convinced me without a doubt that I needn't fear death.  Those same religious beliefs counseled me against what would basically have amounted to indirect suicide, i.e., refusing the surgery and hoping against hope that this would all go away if I just waited out a few more weeks of blood transfusions and ineffectual intravenous guzzling of steroids.  Most important of all, I have a family who would have suffered unimaginably at losing me.  This last was the one factor that caused me to consent to the surgery without even a mental protest.

 

I had no choice at all but to defer worrying about how I was going to manage working with an ostomy without eyesight. Cross that bridge when you come to it, I thought to myself.  Right now you just need to let them fix it so you don't sink into your own grave in a bloody, Dilaudid-soaked mess and decimate your family in the process.

 

The Crohn's-induced thickening of my colon had caused it to adhere to my spleen so badly that it had to be removed right along with my destroyed large intestine. My diaphragm was also severely adhesed and tore during the procedure.  I had to have it repaired.  The surgeon probably would have removed it as well if a human being could live without a diaphragm.

 

Over the ensuing weeks, I had nurses and nursing assistants empty and change my bag while I remained hospitalized so that my medical team could fight to control the inferno of inevitable infection resulting from having blood and stool leak out of my colon to where it had no business being. I was told that my surgeon spent quite a bit of time irrigating my abdominal cavity to remove the offending material.  I began to take i.v. antibiotics, having to switch several times before finding the right one to control my soring white cell counts, fever, and shocking malaise.  Oh, and I still wasn't done with the opiate flood.  There was plenty of residual abdominal pain, which merely accompanied the inexplicably long-lasting postop pain that was a direct result of the surgery.

 

The all-encompassing and heretofore ignored issue now rose to the forefront. How was I going to empty and change my own bag?  I had always been scrupulous about keeping anything off my hands.  As a blind person, I absolutely hated it when I so much as got food on my fingers while eating.  I was no good as a cook except for what I had absolutely had to do to survive back in my bachelor days for the same reason.  For me, getting my hands dirty was the equivalent of someone sighted getting stuff in his eyes.  No one could see through a glob of food or lotion or something like that.  Now I was going to have to put up with poop on my hands.  Wearing gloves was out of the question; for me they're equivalent to a blindfold.  Even a slightly translucent blindfold would be enough to put a damper on the old peepers.  Add to this the fact that I had subsequently developed an aversion to touching anything most would definitely find disgusting, and I had a recipe for a very reluctant ostomate indeed, where ostomy management was concerned. 

 

Worst of all, I assumed that my wife wouldn't want to have to assist me with any of it. Oh, don't get me wrong; I knew she would help me, but I assumed she would do it with the same reticence I felt about myself.  Shame on me!  I should have known better.  I wasn't thinking clearly.  How could I, what with my sanity-threatening grief at having my worst Crohn's-related fear become brutal reality from one minute to the next and my now chronic opioid-induced brain fog?  Lisa, who is sighted, emptied and changed my pouch without a peep of complaint or even the slightest expression of disgust.  She has never once made me feel dirty or ashamed or like a burden, not once, not even a little.  I certainly didn't need help feeling that way.  She acts as if my ostomy was always a part of me, as if it were no more unusual than my right arm.  Her love and care have made all the difference.

 

Having to rely on Lisa to change my appliance is one thing. It's not too hard to plan and prepare for.  Emptying the pouch became a more immediate problem.  We both knew without a doubt that it would simply be too difficult for me to empty a pouch with the roll-up Velcro style opening.  While in the hospital, one ostomy nurse couldn't find that kind of bag for an appliance change, so she used one of the Coloplast models with a funnel-like tap for emptying.  I was thrilled.  Narrowing the opening was just the ticket.  This way I could at least not worry too much about aim when draining my pouch.  I did find that I had to be careful not to jostle the tap or let it swing in any way while emptying the pouch, as this would get poop on the inner sides of the toilet bowl and sometimes beyond.  I had to learn to empty the pouch while keeping the tap as still as possible.

 

Being able to empty my own appliance was liberating, but I still don't change my own bag. Until recently I was not sure which system I would be using.  At this point I'm all but certain that the one for me is the Coloplast SenSura Mio Click #10502 skin barrier with the #18620 pouch in combination with the Brava barrier ring #12037.  This at least has apparently solved the leak issue that I had with the too-big Coloplast SenSura Mio 1-piece appliance.  Though I haven't yet attempted to change my own bag, I can see a major advantage of a 2-piece system, namely that being able to line up the skin barrier with the stoma is easier to do by touch because there isn't a plastic bag obscuring tactile feedback when applying a skin barrier with a cut hole in it.

 

This brings me to another big obstacle to changing an appliance without sight. Cutting the wafer to fit can't be done by touch.  Well, okay I suppose if I were Rain Man I might be able to measure the appliance by touch and cut the wafer perfectly completely without effort, but alas, I'm a normal person without apparently quantum-level sensitivity to the universe.  Precut pouches would seem to be the way to go.  If you're blind and don't have access to the kind of assistance that Lisa so kindly and uncomplainingly gives me with such obvious love, I encourage you to measure your stoma with an especially adapted ruler or have someone sighted do it and then purchase precut wafers.  One caveat with this approach is that your stoma might not yet be shrunk to its normal size.  The fact of the matter is that you'll much more likely than not need some sighted help in the beginning, at least until the size of your stoma stabilizes.

 

Without my wife, this story would be a sad one indeed. Lisa didn't only provide the practical support I needed due to blindness.  She was the voice of reason and wisdom in my grief.  Her words and perspective have hastened my emotional healing.  Her attitude that we're in this together and her unending patience with all the hiccups along the way have made emotionally smooth sailing of what would otherwise have amounted to a psychological train wreck.  I'm inexpressibly grateful.

 

If you've made it this far, thank you for reading. Thoughts?  Questions?

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


LK, Robert, VeganOstomy and 3 people liked
Quote
john68
(@john68)
Registered
Joined: 3 years ago
Posts: 1620
May 27, 2019 4:40 pm  

Hi Tony, Thank for taking the time to share your journey. Any new ostomate faces challenges and with your sight loss that would have floored most people. The way you have coped and excepted is nothing short of amazing. 

ileostomy 31st August 1994 for Crohns


LK and Tony liked
ReplyQuote
sjlovestosing
(@sjlovestosing)
Registered
Joined: 2 years ago
Posts: 444
May 28, 2019 9:53 am  

Hello Tony,

I also thank you for your story. It humbles me to think that, comparatively, I've had it very easy as an ostomate. Yours is a story for all of us to read. It helps us to realize that nothing is impossible to overcome - especially with God's help and the right support. Your wife is a gem!

God bless,

Stella


LK and Tony liked
ReplyQuote
Tony
 Tony
(@ileostony)
Registered
Joined: 1 year ago
Posts: 229
May 28, 2019 10:23 am  

Hi John,

 

Funny, but none of it really feels amazing. Maybe I'm just too hard on myself, but I'm not satisfied with the level of competence I've achieved in coping with my ostomy, and I probably won't be until I'm changing my own appliance independently. I'm scared to try it because the thought of touching my stoma or having output without a pouch on and not realizing it until it plops onto my clothing or the floor is daunting even from the most positive perspective.

 

Stella, though things could have been much worse for me and I don't have it nearly as bad as so many ostomates out there, it feels pretty good that my story can help others be grateful for their own situations. My wife is all diamond, and I'm all rough. I got the better end of the deal when we said, "I will."

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


john68 and LK liked
ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 6 years ago
Posts: 2988
May 28, 2019 10:27 am  

Wow, Tony. What a fascinating, insightful journey! Thank you for sharing this.

I am incredibly thankful that you have such an amazing, caring wife. Please, be sure to thank Lisa for me! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


LK and Tony liked
ReplyQuote
Tony
 Tony
(@ileostony)
Registered
Joined: 1 year ago
Posts: 229
May 28, 2019 11:08 am  

Lisa is quite appreciative of your comments, Eric.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


LK liked
ReplyQuote
SqueakyandLiza
(@squeakyandliza)
Registered
Joined: 1 year ago
Posts: 614
May 30, 2019 4:25 am  

Thanks for sharing your story, Tony. You have definitely been through a lot. Lisa sounds amazing and I am so happy you have her. My husband has been great too. I don't know where I would be without him. I might not even be here if he hadn't convinced me to let him call 911 the night my colon perforated. I too had lots of stool where it didn't belong and was very septic as a result.  It turns out my colon was perforated in two spots. Not sure how long the first perforation had been there.   My surgical wound has been very slow to heal and I had a wound pump until about a month ago and now have gone to "old school" dressings that need to be changed at least 3 times a day.  Tom has been coming home in the middle of the work day to change my dressing every day.  Having a loved one who is so supportive makes all the difference, doesn't it?

If this isn't too personal,  can I ask if you were born blind, or if you lost your sight at some point in your life. I am so impressed that you are doing as much as you are in your ostomy care, and that you are considering options where you could change your own appliance. I just started changing my own regularly in the last couple weeks. I had a home health nurse coming 3 times a week until recently and she would change it for me when she did the wound vac dressing.  I am getting better, but it is still a chore to change. If Squeaky cooperates it isn't too bad, but Squeaky tends to be a bit of a troublemaker. 

Again, thanks for sharing your story and being an inspiration. 

Liza and Squeaky

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


LK and Tony liked
ReplyQuote
Tony
 Tony
(@ileostony)
Registered
Joined: 1 year ago
Posts: 229
May 30, 2019 6:53 am  

Hi Liza,

 

It's not too personal a question. I was born with a good deal of vision, though my parents noticed immediately upon walking out of the hospital with me that my eyes didn't react normally to sunlight. Apparently I didn't blink or something, can't remember what they said. Anyway, of course they had it checked out right away and discovered that I had a progressive visual deficit that would affect my retinas, which are now floating in pieces in my eyes and completely useless.

 

I have a favorite color, blue, and I played video games with reasonable competence for much of my childhood. Print had to be gargantuan in order for me to make out a single letter, and my reading skills were complete crap. I got sick of everybody hating my turn to read aloud in class, so I asked my teachers to teach me braille. They fed me a bunch of archaic Kool-Aid that I should exercise what little vision I did have, so no dice. My mom found out their response and put me in a school that would give me what she knew I needed, not by her own judgment but by trusting what I knew of my own visual deficit. I learned braille, and presto, one literate preteen comin' right up! I went from barely managing a word at a time in Dick-and-Jane style readers to reading Gone with the Wind in about 2 years. It was a revelation. I wasn't stupid; I just didn't have the elements with which to succeed at reading.

 

Have you read about ways to slow down or temporarily stop your output? I eat 3 big marshmallows about half an hour before a pouch change. That seems to do the trick. A bagel or a fairly ripe banana also works, though I find the marshmallows usually work best. Try it if you can before your next planned pouch change and see if it quiets Squeaky down for a bit. I find that marshmallows stop my output for a good while.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


zhtfreak, LK and john68 liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 3 years ago
Posts: 841
May 30, 2019 6:24 pm  

Wow. Tony, I have loved reading your story. Loosing my site, would be totally unacceptable for me, but with the malabsorption and anemia, it is causing site issues like crazy. I already had cataracts, and a very dry spot on one eyeball, but I can still see, I just cannot always read and that had better change if my eyes know what is good for them! Like threatening them will work, Honestly Linda!  You have such great strength.  I cried when I read your story, and I right away I was so appreciative of the strength that your Lisa has, all things considering you are a lucky man, your own strength speaks of that. The courage I draw from others here makes this line of support pretty darn fabulous. Because my hubby died 5 months after my stoma, I appreciate the support your families have given you all the more. I always count my blessing in life even in the rough times, and you all are a blessing in my life also. Thank you! Stay determined and plug on forward even if you have to use suction cups! 

Linda


Tony liked
ReplyQuote
Tony
 Tony
(@ileostony)
Registered
Joined: 1 year ago
Posts: 229
May 31, 2019 8:26 pm  

Hi Linda,

 

Thank you for the kind words toward my beautiful wife, and yes, I'm the "lucky" one. It's worth noting that I recognize that some might begrudge others their blessings if they have lost something similar, but your attitude is the opposite despite such loss. I fervently wish you could have your husband with you. Don't think I don't understand how fragile life's blessings can be, how they can suddenly be taken away.

 

I'm sorry to hear you're having your own visual difficulties. Have you taken a lot of hydrocortisone over the years? That might explain the cataracts. I have them too, which have greatly contributed to my sight loss. You can get them fixed, as I'm sure you well know. Vision isn't quite the same post cataract removal, but seeing things without the crystalline lenses sure beats having to look through a cloudy barrier like that.

 

To all of you who have responded to this topic so far, I want to say how wonderful it is to have a place to go where one can be vulnerable without fear. This community truly is a haven. Thank you all.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


zhtfreak and LK liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 3 years ago
Posts: 841
June 1, 2019 7:37 am  

Tony, that is so very kind of you to say. Thank you. I would have him back in a split second, especially on these long nights, but that would be greed on my part. When I miss him so terribly it hurts, I just remember that sweet warm man laying beside me in bed, and those big strong hairy arms wrapped around me in the middle of night, then suddenly jumping into action plunging the covers over my head after one of his peace shattering, smelly heated gastric moments and wishing I could hold my breath long enough to fight back and escape the situation, only to loose the battle in a disgusted pile of laughter and struggle, trying desperately to spit the smell out of my mouth...hmm, lets just say it kind of helps to soften the blow some.  It is ten years this summer and the loudest, sharpest absence I have ever known.  His support to me was vital on so many occasions from the start. As newly weds, he was the first to acknowledge the pain, exhaustion, and struggles as well as the injustices, I am so glad I told him often how much he and his unyielding support meant to me.  It is so important to acknowledge the support we receive from our families, but to have it so deeply and personally from a spouse, is the most remarkable backbone one can have.  When I read of a supportive  spouse, I do strongly admire what it takes to be in that position, knowing well the changes that can take place. The role they play in simply moving forward needs to be acknowledged.  One is truly blessed to have a great man or woman walking beside them, in front and behind, they all deserve a "special mention" of their own. 

My cataracts have been present about five years or so now, I know they can fix them and usually to a greater benefit. I remember watching my Gma putting her index finger in the coffee cups while filling them. Refusing to have the surgery for fear and lack of encouragement from her spouse. When she was eventually talked into it she could see better then ever afterwards. No exaggeration, but she never missed her heavy coke bottle bottom glasses, and when she looked at each of us after, she said it was like seeing us for the first time. After Gpa passed, she became strongly independent and passed several years later at the age of 98 1/2.  She was a force in her own way.  Her example of courage walks strongly beside me every single day. I have only been on Cortisone about three times and only for short treatment. Knowing the diagnoses now, I imagine the conflicting results doctors must have been faced with.  The only time I was anything "text book" was when healing from surgery. It has been a long hard struggle of trudging forward trusting that somewhere someone would know something and I guess this is that time.  In reading a history like yours, and learning of your struggles and not being able to see, I have to admire your strength even more. Having determination as yours is so vital in all of this. The will to move forward, on step at a time, concur and continue to concur is outstanding. Thank you for the fine example of being brave!  When I loose my brave, even for a while, I draw on the courage of others. Thru fuzzy eyes, I can't fully edit tonight, sorry this is long, but I have to proudly say, Tony, you have out done me!  LOL!

Linda


Tony liked
ReplyQuote
sjlovestosing
(@sjlovestosing)
Registered
Joined: 2 years ago
Posts: 444
June 1, 2019 8:39 am  

Hi Linda,

I have to say that you ARE courageous! We who have faced adversities in our life and did not let them get the better of us as well. For me, my bravery comes from God. Without His help, I would not have gone through what I did.

Wishing you all blessings from above!

Stella


Tony liked
ReplyQuote
zhtfreak
(@zhtfreak)
Registered
Joined: 2 years ago
Posts: 42
June 1, 2019 3:18 pm  

HI Tony,

 

Very well put. I'm glad everyone here is so empethetic to each other, probably because everyone has gone through something incredibly difficult. The general blind community could take a page from this one.

 

Reading what you went through must have been a difficult thing. I echo what everyone else has said that It's a very good thing that your wife has been so supportive and helpful through all of it. I don't want to make this about me (you can read my own intro post for that), but I'm glad you're also active here.

Brian


VeganOstomy and Tony liked
ReplyQuote
Tony
 Tony
(@ileostony)
Registered
Joined: 1 year ago
Posts: 229
June 1, 2019 4:22 pm  

If I ever get to a point where I'm changing my own appliance, I'll post about it for sure. What I discuss in this intro is only based on deductive reasoning of what I think would be necessary to change a pouch without site. A 2-piece system with precut wafers seems perfectly logical to me at present, but perhaps I'll find another way to do it. There's also the question of preventing a mess due to unexpected and unseen output. An ostomate doesn't always feel output as it occurs. Eric's technique of hanging an open plastic bag from the waistband, assuming I understood the description correctly, seems like it would probably be one way of dealing with output while changing the appliance, assuming one does it standing up. The fact of the matter is that if you're blind, as in so many other areas of life, you'll need some sighted help initially. Once the stoma size stabilizes, it should be smoother sailing because you can then use precut wafers reliably.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


ReplyQuote