The Journey of Acceptance and Anger: My Battle with Diverticulitis and Colostomy

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Cap\'n Oblivious

Early May of 2011, I checked into the ER with a severe diverticulitis attack. Three days in the hospital, Cipro then some 'cillin or other after it turns out I'm allergic to Cipro, and I go home.

I had talked with a surgeon the night I went into the ER and I was already stressing "the bag thing" as a possibility. No, that isn't what the surgeon was talking about. Made appt. to follow up in a couple weeks and learned about the laparoscopic partial sigmoidectomy techspeak-techspeak-techspeak...

Okay, so early June I'm in for the surgery and it all went extremely well. Walking, talking, eating and gassing by late that evening. Cool.

Home three days later and all is well. The JP drain was kinda gross and hurt more than anything else did. Until three days later when my wife rushed me to the ER with abdominal pain like I never knew existed. It hurt so much I was literally seeing double from the pain. Four mgs of IV Dilaudid later and they are telling me the surgeon is on the way in. Pretty sure it's a leak and I will wake up with a colostomy. I'm not liking this, but the wonder dope has me calmed down and I accept life over a painful death and put myself in the hands of the surgery team.

I woke up six or seven hours later and...No Bag! They couldn't find a leak and decided it was "an infected hematoma or something" that broke free and sent me into sepsis. I responded well to the treatment and three days later I'm back home. I'm pretty sore this time but I'm still walking and following the high fiber diet the surgeon told me to adhere to.

Six days later, I'm in the hospital checking in for an emergency colostomy as a CT scan has finally found the still active anastomotic leak putting me back into sepsis again.

I awake from my third surgery in 15 days a couple days later after being moved out of ICU. I've got an epidural, a catheter, a colostomy, and I'm open from an inch above to 2 inches below my belly button. I've got a pain pump hooked into my fentanyl epidural and getting 2mgs of IV Dilaudid every 3 hours. Lots of Benadryl because I itch. I'm raving from the fever and the drugs, I'm scared, I'm shocked and horrified...I learn to accept this eventually and I don't have a nervous breakdown every time I have to drain/change a bag.

I go home 8 or 9 days later. I'm in bad shape, I've lost weight, I am on a shoebox full of antidepressants, antibiotics, pain pills, stool softeners, tranquilizers and who knows what else and a wound vac plugged into where my belly button used to be.

I accept this new victimhood and wallow in it for a while. I haven't been to work in a month and my wife and I are sitting outside watching the neighborhood 4th of July show. I walk back in kinda early and lay down on my new (rented) hospital bed. I can't sleep in my bed as it hurts and I'm afraid of various fluids leaking out all over my wife in the middle of the night. So I sleep in the TV room.

I accept this.

Four or five days later, I'm back in the hospital due to bad problems with dehydration and malnutrition. I can't eat...the thought of it makes me gag. I can't drink, I just can't. I weighed in at 216 lbs. the day I went in for my first surgery about three weeks prior. The day I check in I weigh 187 lbs. and dropping at a rate of a pound or two a day. I break mentally, emotionally and physically. I'm a witness to my own evaporation.

I spent the next 4 days being IV-ed back to health and eating again. I actually put a few pounds back on. I go home and have to take home TPN now to augment nutrition so I don't fall flat on my ass (which is actually really flat by this time) again. A friend of mine helped me with a program to keep me hungry, thirsty, and a way of watching my own dissolution without it being so painful.

I accept this.

Finally (yes, compared to a lot of stories here it's nearly instantaneous) late September rolls around and a new surgeon (specialist this time, highly recommended, different hospital, the whole nine yards) is cutting me open to put me all back together.

Well....sorta. I wasn't properly healed yet and there was extensive "chewing gum" scar tissue and the odd adhesion or two he had to fix. If he puts it all back together and something goes wrong, I'm brown bagging it for life. So, he does a loop ileostomy until everything heals right. He made the right call, I am comfortable with this. I like this doctor, he's smart and he's a focused guy. Good, that's why he's recommended. So I wake up and find this all out, and because of the drugs and emotions not only am I okay with this, I'm happy.

I accept this.

I go home a week later since they kept me in extra long given the history to keep an eye on me.

But.

This isn't the same deal anymore and it finally dawns on me. It's harder to deal with every day instead of easier. The colostomy at least was pretty much just pooping from somewhere new. Everything worked on a schedule, I knew what to expect, I could deal with it. I accepted it.

I'm suddenly gagging taking care of the bag duties. I can't look down hardly, I hate this and want to reject the entire notion. I'm in a deeper depression hole at this point than I have ever been. Then the insurance companies get involved, uninvolved, convoluted, miscommunicated and over Automated Answer Desk-ed.

I popped my cork, I bent on a raging hate-filled war against it all. I mostly won too.

I did not accept it.

I am now looking at a final reversal by as soon as mid/late December which is fantastic news. If it holds.

I am skeptically accepting the plan.

But man, did it finally feel better to quit accepting so much and bark back again.

By the way. Why can't I seem to stay signed in if I try to go to the forum?????

mooza

Captivating!! Didn't actually make me feel better. I have ileo for life. Congrats though.

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Bill
What A story! and what a writer.Thank you so much for sharing. The perverse nature of these gross mis-happenings lead me to feel so much more at ease with my own experiences.I do hope things go better for you in future.Best wishesBill
bob.hewson

So just another day at the office then..... You have had a hard time, I can only start to imagine how you feel, but you do have a potentially good outlook, let's hope you are fixed this time, Bob

tess45

Accept things, my butt - try not to get depressed - fight back - it's only a bag after all LOL - it's great that you can get a reversal - I'm a bag lady for life - extreme diverticulitis like you - except when I went into the hospital ER and I had my first surgery the next day - I was about to die - My ass is so flat I don't think it even qualifies as a butt anymore, never mind what happened to my breasts and the rest of me - can't seem to get above 94lbs and I'm 5'6, not a good look - just makes me say I may be small but I'm mighty - keep in touch, I would like to know how you get on.

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
Carolw

Been there, done it all. 11 trips to the theater after an operation on my piles that was only supposed to be a half-day stay in the hospital. Death bed twice, depression, long-term sick but making up for the 3 years that it has taken for me to start my life again. This time with my friend Winnie, who is my friend for life. It's going to be a good life xxx.

Carolw

Hope all goes well for you xxxx

bob.hewson

I just found this and thought you may like it and feel you were not too badly off! A really bad day. The following is seen in a Florida newspaper: Ever had a day like this? A man was working on his motorcycle on his patio and his wife was in the house in the kitchen. The man was racing the engine on the motorcycle and somehow, the motorcycle slipped into gear. The man, still holding the handlebars, was dragged through a glass patio door and along with the motorcycle dumped onto the floor inside the house. The wife, hearing the crash, ran into the dining room, and found her husband lying on the floor, cut and bleeding, the motorcycle lying next to him and the patio door shattered. The wife ran to the phone and summoned an ambulance. Because they lived on a fairly large hill, the wife went down the several flights of long steps to the street to direct the paramedics to her husband. After the ambulance arrived and transported the husband to the hospital, the wife uprighted the motorcycle and pushed it outside. Seeing that gas had spilled on the floor, the wife obtained some paper towels, blotted up the gasoline, and threw the towels in the toilet. The husband was treated at the hospital and was released to come home. After arriving home, he looked at the shattered patio door and the damage done to his motorcycle. He became despondent, went into the bathroom, sat on the toilet, and smoked a cigarette. After finishing the cigarette, he flipped it between his legs into the toilet bowl while still seated. The wife, who was in the kitchen, heard a loud explosion and her husband screaming. She ran into the bathroom and found her husband lying on the floor. His trousers had been blown away and he was suffering burns on the buttocks, the back of his legs, and his groin. The wife again ran to the phone and called for an ambulance. The same ambulance crew was dispatched and the wife met them at the street. The paramedics loaded the husband on the stretcher and began carrying him to the street. While they were going down the stairs to the street accompanied by the wife, one of the paramedics asked the wife how the husband had burned himself. She told them and the paramedics started laughing so hard, one of them tipped the stretcher and dumped the husband out. He fell down the remaining steps and broke his arm. This story redefines what it is to have a bad day.