Struggling so hard to handle this NIGHTMARE!

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EdieAngel
Posts: 1
Joined: 2022-10-25 17:41:28

Struggling so hard to handle this NIGHTMARE!

Post by EdieAngel »

When I discovered three years ago that I had to have surgery for a prolapsed rectum and that risk was a possible colostomy, I prayed and prayed hard. The morning of surgery, I wasn't afraid. I just knew with all my heart that my loving Jesus had heard my prayers and was going to handle things in surgery by guiding the surgeon's hands. But I woke up to my worst fear had come true, and that included dying. I would have rather died in surgery than face the hell I found myself in. I was hurt and so angry with Jesus. I despised it and my life the whole time. I developed a hernia, and when it started growing, I went to my surgeon, but she said she wouldn't do anything cause surgery wasn't an option due to my health issues. It grew and grew as months went by until I looked like I was eight months pregnant! I was not fond of it as much as colostomy. I even had ignorant people tease me. Of course, I knew I looked funny. I looked like a 68-year-old pregnant-looking old lady. I called it my alien.
The whole colotomy experience was a nightmare. After the surgery, I had to go to a rehab facility and stayed in that place for three months. I realized I had to play their game to get out and go home. So that was when I learned to put on a mask, pretend I was okay, and I was handling and accepting this nightmare okay. I finally got home, but there was no celebration because I was sinking in self-pity. My life was no life. I wasn't living; I existed in a world of exploding bags, leaking bags, waking up with poop all over you, constantly thinking I smelled like poop, etc. I didn't leave home unless I had to, which was only to the doctors.
After two years of this hell, I finally decided to do research for another surgeon for a second opinion. Well, God listened to my prayers for the first time in a long time. He led me to an excellent rectal surgeon specialist. After he looked at all my medical records, he explained that there didn't need to be a colostomy in the first place. He said he could help me if I chose. He gave me several options and the pros and cons, including the risks. Even though I wanted one way to get it done all in one surgery, I picked another option with fewer risks to me. This option was to go in and fix the alien (hernia), close up the colostomy, and put in a temporary ileostomy that would have to stay in for at least ten weeks or a while longer, depending on healing. I hated that one too as much as I did the colostomy, but I held on to the "it's only temporary" to keep me going. It came time for my dream to come true, reversal surgery day. It was done with no complications, and for the first time in three and a half years, I was normal again. I was ecstatic! I was going to the bathroom like ordinary people again, not in bags. I was wearing stylish, not oversized, or pregnant clothes, I was not waking up with poop all over me, and I didn't have to worry about those disgusting bags exploding, leaking, or just not sticking right. I was not deformed. I was thrilled!
Well, sadly, that was only for eight months. On September 9th of this year, I went to the bathroom like regular every morning, and I started having a bowel movement, a little came out, and then I got the worst physical pain I had ever felt. I stayed on the toilet to finish the bowel movement but no more came out, but the pain was still there and getting worse. I continued to sit for a little longer, hoping it would ease up. After a while, it felt like my stomach was getting bigger and fuller and hurting so badly. I had hubby help me to bed in hopes that it would ease up, but after several hours passed, it just seemed to get worse. I almost felt like life was leaving me, so I told hubby we better go to the ER. I had no idea what was wrong, but if I had known then what I know now, I would have never gone! After a cat scan, they told me I had a perforated bowel, and if I had waited too much longer to come in, I would be dead and they were rushing me up to Missouri ( I live in Arkansas) to my surgeon. I was not concerned; my surgeon would take care of me. They rushed me right into surgery. When I woke up, I found out that my worst nightmare had come back to attack me, I had a colostomy, and this time it was permanent! I was crushed and hated my surgeon. How could he do this knowing how I felt? But he said I had several perforated holes, something he had never seen before, and there was nothing left of my intestines to save. He said he and his assistant spent 5 hours trying to clean my stomach out of all the poison that was in my stomach. He said when he and the assistant saw that they could not save enough to hook me back up, they both shook their heads cause they knew how I felt about having a colostomy. I told him that he should have let me die on the table! So now, I am living in hell and don't know how to climb out. I hate when people tell me that there are millions of people that live perfectly every day, well-adjusted, happy lives! I want to scream at them, that is great for them, but I AM NOT them. People suggest counseling. I tried that before, and that didn't help either. It didn't change anything; I still lived with everything I hated. I don't know why I joined here, but here I am.
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To Dream a Dream
Posts: 1414
Joined: 2010-08-10 18:35:53

Re: Struggling so hard to handle this NIGHTMARE!

Post by To Dream a Dream »

Thank you for your very honest & enlightening post. It reminds me of many similar feelings when I was first operated on for a perforated small gut at fourteen. I managed to hold off ostomy surgery for another twelve years for similar reasons & did have to be revived on the OR table when it was finally performed. I woke up very very angry. That was back in the days when patients enjoyed the luxury of being kept in the hospital among staff who had grown to know & care for them until they were able to cope with many of the overwhelming problems you are facing without that support. Believe me, I truly feel for you as you strive to adjust.
Speaking from personal experience, I began to heal (physically, emotionally & spiritually) in small steps as my body adapted to being free of the disease toxins that had been killing me. As a fellow believer, I also have my faith to carry me when my strength weakens. And in knowing I have the prayers of others to reach out for me.
Practically speaking, UOAA was founded to assure you that you are not alone & continues to offer support thru many resources. You have joined our Discussion Board. A big step for someone contending with all you have been through. Expressing your situation & frustrations in a concise honest post. Encouraging others to respond to you & share their experiences.
Hopefully, this will help you to develop a new self-confidence (as a person who has survived many health challenges including ostomy surgery) & an appreciation of your own worth as a courageous individual.
Please visit the UOAA website. https://www.ostomy.org/
It contains a wealth of information including articles by ostomy nurses. From your post, you may not have a team of health care professionals to support you in managing an ostomy. You'll find tips & suggestions on the site. As well as info regarding local support groups.
Please continue to reach out to us on the board, also. As you progress in your own recuperation a day at a time.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
User avatar
To Dream a Dream
Posts: 1414
Joined: 2010-08-10 18:35:53

Re: Struggling so hard to handle this NIGHTMARE!

Post by To Dream a Dream »

I found the following UOAA Affiliated Support Groups listed in the current issue of The Phoenix Magazine, the official publication of UOAA:
Arkansas: Little Rock 501-837-7225, Mountain Home 870-508-2273 & Springdale 479-530-7193
Missouri: St. Louis 636-916-3201, Columbia (Zoe Prevette, CWOCN--Ostomy Nurse) 573-815-3817,
Rolla 573-426-2214, Springfield 417-351-5635
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
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lolapergola
Posts: 500
Joined: 2009-01-01 12:45:09

Re: Struggling so hard to handle this NIGHTMARE!

Post by lolapergola »

Dear Edie , I think everyone has felt like this at some point .You aren't deformed or any less worthy than you were before the operation .Exploding bags and leaking bags are a result of badly fitted equipment and can be remedied by a good session with a stoma nurse .A filter on your bag , regularly changed or empty bags , should not smell of poop .You can take Devrom tablets from Parthenon to drastically reduce odour from poop .
Your anger won't shock anyone on the board , there have been many people who have vented here , it's part of the acceptance process .So - I know you are saying you don't accept it ,and don't want to accept it but it's permanent and the sooner you do accept this is your new normal , the sooner you'll move on with your life .I know you felt God didn't listen , but if Jesus listened to all our prayers everyone in the world would be Christians and getting what they want .Jesus promises to be with you throughout your problems not to take them away .2 books which will explain this more clearly than I can are Joni ( by Joni Eareckson-Tada ) and Life Without Limbs by Nick Vujicic .Both of them are Americans and both have websites and info on YouTube .
Don't feel alone , we all struggle .I have a really loud stoma and I hate it when people say "no one will know you have one unless you tell them ".Er- no !
They will and do make comments on it but everyone has gas .Why should I feel ashamed when everyone on this planet does the same thing .I see Dream has posted your local support group where your feelings will be met with empathy , why not try it and meet like minded friends ?
best wishes
Lola UK
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