Surviving a Colonectomy - My Journey to Recovery

I'm still here. I had a total colonectomy in Feb of 2010 because ibuprofen burnt several holes in my colon. They had reconstructed my colon and I was told that I would be hooked back up in a couple of months. Well, all the fistulas and infections almost killed me. I was septic on two different occasions in the first 6 months. I went from 225lbs to 149 lbs in 3 weeks. I had 9 drainage tubes coming from my body for the first 3 months after surgery. Then 1 tube in my rear end cheek for 2 more months past that. I didn't count the 2 vacuum tubes coming from my stomach that were in for the 1st month. I spent 8 months total in the hospital in 2010. I also had 30 different surgeons from Feb 2010 to Aug 2010. I was in a VA training hospital. If it could have gone wrong, it did. The first 3 weeks after surgery I was completely out of it. I could not tell you what happened. My wife tells me things a little at a time. I was gutted in a hospital bed (a week after the first surgery) from hip to hip after because the surgeons determined if they did not cut me immediately I would have died. There was green pus everywhere and then I was rushed to my second surgery. I felt horrible for a year. Not to include all the infections from the appliance around my stoma.
There is a light though!
In August of 2010, I met a surgeon who completely took over my care. No one was to touch me or test anything without her permission. I can't say her name, but she was from Saudi Arabia and my Guardian Angel. She had to perform a couple of minor surgeries from August 2010 to Feb 2011. In Feb. 2011, she removed the reconstructed colon and literally hosed out my insides. I am now a permanent ileostomy person.
Here's where I am as of today.
My stoma no longer has sores all around it and it sticks out about an inch and a half. I weigh 195 lbs and have a nice color to my skin. I have no infections nor fevers. I'm active and have actually come to terms with the bag. I like having it over needing to sit in public bathrooms. I go places I couldn't go before because of that reason. I enjoy more foods now that I couldn't eat before. I smile more. The kids like the fact I don't fart anymore. Was I through some crap over the past 2 years? Yes. Am I alive and happy? More than ever. The only thing is I tire real quick. Am I going to live longer and healthier now? Yes, but they also have to close all the McDonald's. I'm addicted to Big Macs. It does get better after all. I was so scared and begged God to take my life at one point, but he said no! I'm glad I'm here and when you're at your lowest through all of this, remember "It will get better". Good luck to all who are going through the pain right now. I wish you the best and I'm here for any ideas or just to be a person to be a pen pal.

What an interesting story! Thanks for sharing it!

Well done, jghandyman! I peeked at your photos and you are looking very good! I hope you continue to recover and enjoy those Big Macs. I'm at about 2 and a half years with my colostomy and YES, things do get better. Best of success to you in your recovery.

Such a joy to hear such a positive story come out at the end of all that. Thank you so much for letting us hear about it.

Oh wow, thanks for your story mate. Be proud, you made it. I understand, but if I had a button, not sure if I would have pressed it. You are my new hero. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Good for you!!! Inspiration just keeps pouring out of our "OSTOMY BROTHERS AND SISTERS"..............Wow.....Success stories do more than just lift our spirits, they give us hope and sometimes allow us to dream and consider the possibilities of a future, limited ONLY by our imaginations!!!!! That's a gift indeed.......Continued great health and very nice to meet you.........BEG

Hi: Thanks so much for sharing. I am having a lot of issues myself - or so I thought until I read your journey. May God bless you and keep you all the days of your long life. Thanks.

Hi Painmed, I will tell you, I wanted to die at one point and I almost did. It will get better. Sometimes we find ourselves with more than we can handle, but we have no choice but to handle it. I was scared and in a lot of pain, and thinking, "How am I going to live the rest of my life this way? My God, what did I do to deserve this?" That question still hasn't been answered. I read your profile and found you're going through a lot of what I went through. That damn bag was the worst. I had a hard time getting it to stick for months until I realized I (and the nurses) were using remover to attach my appliance. The packaging was the same. And the smell! I threw up a few times when I changed my bag at first. I now set everything up on the sink. I cut my appliance opening. I change my appliance every 4 or 5 days unless it starts seeping. I take my showers at 10 or 11 am on mornings when I don't have breakfast. I remove my appliance in the shower and let the water beat on the wound. It cleared up all my rashes and sores. After, I spray it with an antiseptic before I dry off. I get out of the shower, go to the sink, and put on my appliance. I use a blow dryer to keep things dry and to dry the adhesive spray. I apply it, dry it, apply it, dry it, and then stick on my appliance. Sometimes I do get sore, and I use the paste applied directly to my skin around the stoma. I also use powder from time to time. The hardest part of all of this was acceptance. Other than being tired all the time, my life has gotten better. Good luck. I hope to hear from you in a year.

This is an excellent post - I am not certain how I came across it. The writing really tells a story of determination and strong will. We are survivors and although this life is different, we can manage it with some adjustments. Not perfect but what really is? Thank you for the lift. Take care. LH

Wow, this post was written in 2011. It is now 2016, so almost 5 years now and still sounding good. Hope today Jghandyman is doing even better as his words have been left to inspire all who read them.

A lot has happened in the past few years. Eight surgeries later from all the damage from Pgh Va. I'm doing okay and am still alive but why, who knows. I now have a 7-inch ileostomy hanging out of me that's about 2 inches across. I'm not saying what it would remind you of but you have a picture. I did a little work last August as an extra in the TV series The Outsiders. It was an experience but once was fine with me. Working on bucket list stuff and enjoying life. But I am doing better than I was 5 years ago.

Hi jghandymann, thank you so much for the update and the post. Sometimes, people sign up for the website and post some really great information and never return. It is a cliffhanger for me. I often wonder how things are going...etc. Since we use pen names, it is almost impossible to contact anyone. Welcome back! It sounds like things are much improved and I am glad to hear it. Your journey is inspirational. I really liked how you reiterated, "things will get better." Those are very powerful words. Those are the same words that were said to me when I was at my lowest. Hope for tomorrow. Wow...and you had an additional 8 surgeries from the one that you posted about in 2011. Thank you again for touching base with the site. It is good to know that everything is going well. PS - Pittsburgh is a nice city with many bridges that confuse me :) I have been there several times. Take care. Sincerely, LH

I'm actually having one of the best days I've had in years. I have been able to stay up all day and was out working in the yard today. Life is funny. When you get knocked down for years, you learn to appreciate things all the more. The one thing I've done since the beginning is everyday do something constructive. It might not be much, but it tells you how you feel. People tell me I do more than them all the time and where do I get the energy, I tell them "You should have seen me before I got sick!" Lol. What takes me a week or two, I would do in a day. As long as I can get out of bed, I'm happy. Life is too short. How long has it been for you LH? Just so you know, my initial cause of all this is from Ibuprofen. It burnt holes in my colon. In a week of taking it, allergic reaction that the VA knew about.

It is good to read that you are doing so well. Your post is very inspirational. I can't believe that all of your medical problems began because of ibuprofen and an allergic reaction. I never heard of that type of reaction. How awful and you were probably taking the medicine because of some sort of pain to start. Medicine is a necessary evil that may cause other issues. Side effects scare me to death. I had so many while I was ill. It seemed everything prescribed to help me caused me grief. It has been three years for me. My story is that I ate a spoiled hamburger at a picnic and had food poisoning and resolved and then was out with clients and partially ate another bad (undercooked) hamburger. I was sick again and never resolved. Both events happened about two weeks apart. From that point, my entire system was out of whack and before I knew what was happening UC started. It was dreadful. I lost my battle with UC, nothing worked and nothing helped. I tried everything. I went from healthy as a horse (LOL) to surgery in a short time...less than one year. I am happy and grateful that I have this second chance. Good health is something so many take for granted....not me anymore. I am thankful each morning when I wake up and get on with my day. Thank you God for the gift of life. Anyway, my ileostomy is permanent so here I am taking it one day at a time. Thanks again for posting. Talk to you soon. LH BTW....yes I still eat hamburgers from time to time but today they are well done.

You asked about other problems with pain. I had an incident in the service in 1983. I broke my leg, shoulder in two places, broken jaw, concussion, whiplash, and was dead twice. I was on Vicodin for years. I never took many, and I never abused it. I was getting 60 tabs a year, and that was it. I'd only take it when the pain became extreme. Well, when I went in for a refill, the doctor told me that the VA doesn't want to prescribe Vicodin anymore and put me on 800mg Ibuprofen. I told him I can't take any NSAIDs. He said take one a day. It was Monday. By Wednesday, I was feeling great. Thursday, I noticed some spotting, and when I woke up Friday, the bed was bloody, and I went to the bathroom and filled the toilet. My wife rushed me to the hospital where they took me back for emergency surgery. I thank God that the surgeon scoped me first and stopped the bleeding. That was in 2008. I went through every known thing to repair my colon chemically. It didn't work, and then the VA talked me into getting surgery that I would go through two surgeries and be as good as new. I had no idea. I'm a contractor who had to quit working and retire because of this. I wanted to be fixed. In 2010, they opened me up, and I don't remember much but bits and pieces for 8 months. The rest is already out. I really don't mind it except for being tired and I get the sores. I hate that lit cigarette feeling on my belly. But still smiling! Lol I'm going to bed, and I hope all is well for you. Good luck.

So far, so good. I thank God for my surgeon as well. He was brilliant and very kind. Thank goodness your wife and doctor reacted quickly to the situation. All those surgeries to correct what ibuprofen damaged in a couple days. Hopefully, with each passing day, you gain more strength back. Someone told me that it takes years before the body is completely healed from major surgery. I do believe it because my first couple of years post-op, I would become very fatigued at times. Sometimes I think maybe it is age-related too....oh no. Take care and have a nice weekend. I hear we are supposed to get some snow on Sunday....the first day of spring. LOL. LH

I'm doing great in the past couple of days and will take them as I get them. I have to get scoped because of bleeding somewhere and they have no idea where it's coming from. I don't have low blood all the time, but I've had low blood for about a year or so. I'm John, by the way. People get a kick out of me because right now I started another project and I'm building a garage off my house by myself. Many family members are shocked at how I can be dead one day and the next day I'm digging a ditch. That's part of my problem because I can't sit still. I like to use my hands and as long as I'm on the upper side of the dirt, I try to get something done all the time. I guess my life is creating all kinds of things. I bought a sawmill over the holidays and have been trying to cut lumber. I'm actually using the wood I milled to build the future antique store that I'm hoping to have built by the end of the year. I don't know what's going to get me first, my health or an accident. Lol I'll talk to you soon. JMann.

Hi John, wow, building a garage off of your house. That is great! Do you ever worry about hernias? I know that I do, so I try not to lift anything heavy. It gives me a reason to ask for assistance...maybe I ask for more than really needed....LOL. Hope your scope goes well and the bleeding resolves. Anemia is terrible as you always feel drained and tired. I had some bleeding about 1 year after surgery and found out that I had an ulcer. Really, my entire body went haywire after surgery. I developed allergies, asthma, bronchitis, sinusitis, and the list goes on. So weird as I never had these concerns before my surgery. One doctor did say that the trauma to my body with the UC/inflammation and major surgery caused these outcomes. I hope they are only temporary and resolve. It has improved so I am very grateful. Like you, I seize the moment....carpe diem....I live each day to the fullest...even if it is a simple task like going to the store. I make going to the store fun because I am so happy that I can actually go to the store again. These chores that I disliked in the past have taken on a new meaning for me. I like them now. Take care. Hope you have a nice Easter if you celebrate and if you don't, have a great weekend. According to the weather report, sunny and high 60s. Spring is here at last! LH

Well, I have another surgery coming up in the next month to move my illy stoma to my left side. The skin around my stoma has become thin and it split open two weeks ago. Needless to say, after losing two pints of blood and being rushed to the ER, it can make someone very nervous about having a stoma. It's going to be probably my longest surgery yet, and the surgeon feels about 24 hours or more. My recovery will be another long one and take several months. They said I could be in the hospital a week or two months. I'm not scared of the surgery, but I am scared of the new pain I could experience. I've been in pain for the last 5 years, and initially, it would make me drop to my knees, but I've become accustomed to the pain. It's amazing what would initially put you down doesn't after a while. I don't know if I will feel a new pain or not, and that's what scares me the most. And pain meds are useless to me now. They don't work unless I want to become a vegetable, but the pain is still there. Taking pain meds makes it so I can function, but it doesn't dull the pain. I can't take any NSAIDs or any OTC pain killers because that's what caused the problem in the first place. I'll let you all know how it comes out. I'm counting on the worst but praying for the best. Oh yeah, I also could end up with a feed bag the rest of my life too. Depends on how much more intestine they have to take. I currently have 7 inches hanging out of me.

Hi jghandymann, thanks for your post and update. I am so sorry to hear about your upcoming surgery. I will be saying prayers for a quick recovery. I did not realize that you have been in so much pain with your current stoma. I agree, losing all that blood would make me very upset as well. I remember from a previous post that you were doing some limited construction work and repairs. I hope that the docs can relocate your stoma to a better place so that things work well and you can go back to your life. I was on TPN (IV feedings) for several months prior to my surgery 3 1/2 years ago. My frustration with the IV feeding was setting up the tubes as I am not very mechanical. It took me a while to learn the process. But, in the end, I could set up the equipment. Take care jghandymann and please keep us posted on your progress and write back when you can. Sincerely, LH

Hope all's well, luv..............Mooza

Mooza, so glad to hear from you. How have you been... It has been a while? Hope to chat soon. Take care. LadyHope

Geez jghandyman,

We'll be praying for you! Hope all comes out well. I'm sorry you're having to go through this and wish you well in your recovery.