Sweetheart, there are far worse things than a colostomy. Many. I know that many people can say these things to you but you may think it's only their kindness and concern speaking...not their experiences. Trust me. I know what I'm saying. A colostomy is surely nothing wonderful, although to folks whose only option is losing their life, a colostomy is a wonderful thing. Whenever I get down about my situation, colostomy related or not, I begin thinking about other people who were not or are not as fortunate as myself. It really honestly helps me and encourages me to try harder, to eagerly do my best, to attempt to live up to my potential as best I possibly can.
It's okay once in a while to allow yourself to let down, feel the pain, be sad, curl up and cry, get angry, pound the pillow...know what I mean. But dwelling there isn't good. It allows hopeless feelings to set in. Hopelessness always seems to have a downward spiral that becomes more and more difficult to crawl up from. Frustration on the other hand can be used to one's advantage. Whenever I feel frustrated it means there is something in my life that I need to change. Even if it is a situation I have no control over for instance my body (to a certain extent or another person's actions). I can change my outlook. How I view a situation. With practice it becomes easier to do this.
If I had had the opportunity to know that I might possibly end up with a colostomy there are things I might have done. First off I would have had a competent doctor to begin with. I would have done a thorough research on the topic. I would have found out every detail about the actual surgical procedure; the incision, the location of the colostomy, recovery, healing times, medications, etc. Then, I would have spoken with other people who have or have had colostomys. I also would have attended one of the Ostomy meetings. I would have done a little research on the care of a colostomy and the various products available. I'd have contacted my insurance company to find out if they take care of supplies. I won't lie to you, it's a painful procedure. I also had peritonitis and my entire abdomen was involved which is an entire other complication and was the source of much more pain. I would have asked my doctor how would he or I know if I needed one. Under what circumstances I might get one. I would choose a skilled surgeon to do the procedure. I would have talked to an ostomy nurse as well. If I were actually scheduled for surgery to get one, I would have asked someone to help me practice with appliances so I would know how they worked. I would also have set things up so it would be easy on my return home. I wouldn't do any of this unless the doctor was seriously considering this procedure. When you talk to folks with ostomys you'll find they get along very well. I've even seen infants with colostomys. That sure can put things in perspective for you.
I know its scary. Trust me. I honestly know how afraid you must feel. As far as scars...it's really not something to worry about. We all have scars. Some of us have scars you can see, others have scars that are hidden...but you know they are there...usually locked up deep inside. We are all human. Each of us magnificent. American culture teaches some odd values...they aren't real. Even beauty queens have scars. Our culture also teaches us to feel ashamed, humiliated, insecure, and does everything it can to destroy our self esteem. If you realize that everything about you is perfect...just as it is...that foremost your soul, your heart, your mind, is perfect...it's easier to accept your body just as it is, it's also easier for others to accept you... Most people are not going to look twice at your body. They care more about what's inside of you. Those that don't look that deep, don't need to be in your life.
As far as colostomies being painful...other than the obvious, it is surgery and surgery usually is uncomfortable; No. Generally a colostomy doesn't hurt. Matter of fact I was told you can't feel pain there...that your intestines cannot hurt. I can say this from experience. When I've been scratched directly on the intestine, or had a little gouge, etc...it hurts. It will actually bleed, and form like ...gee, how do I explain this; when you get a cut in your mouth, it does not form a scab but it kind of seals over and turns a different color, that happens. When I've had a goat jump and put it's paw directly in it, a rooster run it's darn spur over it, or just hit it the wrong way, it hurts. The skin around it and a little deeper in my belly, hurts when a seat belt is over the area. This is probably not due strictly to the colostomy though as I have other problems.
I don't know your whole story, for instance why you are possibly getting a colostomy...? There are several reasons why someone may end up with one. I have adhesions from the colostomy surgery and from the peritonitis. I've had to learn how to eat and drink to help keep from feeling pulling, tugging, cramping, etc. I know the adhesions that are near the top of my abdomen, to the right of my sternum and down; will cause problems if I drink a glass or more of water and I love water. So I have to consciously control how much I drink at one time, although sometimes being in one or another particular positions can help. I have almost constant tugging up high and when standing up very straight or stretching straight it can bite a bit. On the other hand sitting or laying on my side causes problems down low...can't win. But, it's okay and this is not the colostomy itself hurting but probably residual damage from the peritonitis (the up high pain anyway).
One of the best helps I've found, but also find true for just about anyone, is finding a passion. I honestly believe everyone needs a passion and I also believe anyone can have one (or in my case, many). There may be things you'd like to pursue but can't...instead of looking in that direction...look at what you are capable of doing and head in that direction. Develop a burning interest in something...share it with others if you can. I think this is one of the most important things of all. Developing interests. If you have trouble getting started helping others...reaching out to others...can be a great place to begin. We all can share something of ourselves with another person. It could be holding someone's hand, taking cookies to someone or sending someone who is lonely a card. Visiting a children's unit and just sitting and playing games with the children. Reading a book to someone. Do it between bouts of pain. I do know, that if I were not taking pain medication, I would not at all be able to do any of this. Absolutely none of it. Stupid pills give me this ability. The thing that gets me is there are people in pain and if the doctor withholds pain medication from them...this is what humanity is losing...they are losing the ability of that person to reach out and touch others around them...that is just wrong. So very very wrong. I sure wish the medical profession would understand that they are taking responsibility for the lack of that person being in someone's life, for that patient not being able to be a part of or reach out to the rest of their community, humanity...to other people. It keeps them disconnected but the person they would be reaching out to is also losing out...there is someone's hand that pain patient could be holding and it's the physician that is responsible for their loneliness, their pain; know what i mean? The doctor's decision is not affecting only one person...it affects the family but it also affects all of those people who that patient might have been able to reach out and help even if only in what seems a small way...a child they could've listened to or counseled...an elderly person alone in need of a friend, a crack baby needing to be rocked, a neighbor with a broken hip needing dinner, a new mother who's at her breaking point, on the verge of abusing her child and causing serious injury when that person could have come along and shared her personal motherly wisdom, taught that new mother how to cope... Those are all people who are affected by the physician,s decision not to provide proper pain relief to his patients. Think of all those people he could've healed...just by healing the pain of one....mmm mmm...I'd hate to be that guy standing in judgement before his God. He'll tell God; "Look at all those people I healed" and God will frown. He'll say, "Look at all those people you could have healed by helping one".
Speaking of American Express and don't leave home without them... I took the kids on a trip. I didn't want to carry all the money and travelers checks in my purse or pockets. I put on an extra flange and bag just opposite of my colostomy...basically I was wearing two bags. We stuffed the money and Traveler's Cheques in the fake one. Now whenever my kids need to carry a large sum of money for instance on a trip, they ask for a bag and a flange.
Try not to work yourself up. It'll only cause stress and make things worse. Eat small amounts of nutritious foods. Even if it's only tiny amounts. Drink plenty of water. I'm sold on live culture yogurt and apple cider vinegar (with the mother in it), Ester C, and a few other things. The more you are relaxed the better your intestines will work. Also the more involved in a passion or in other people. You have to keep aware of warning signs but trust me, you'll probably know when you are in trouble. Your body will scream. If you have adhesions on the bowel you'll probably always have pain or discomfort or odd sensations or feelings. Your bowels may be seriously sluggish as well. Oh, there are some very good radiologists who actually can give a very good guesstimate as to whether adhesions are causing bowel problems. I know we have one in my town. The surgeon I have always makes sure he is on duty as his guess is usually very good. There are things he knows to look for and watch for.
Chin up...a little bit at least. Sip on that milk...relax. Find someone who needs you. I promise you, someone is waiting just for you to walk into their life. Even a kind letter to someone.
> ----- Original Message -----
From: Millie
To: Multiple recipients of list ADHESIONS
Sent: Thursday, April 12, 2001 6:04 PM
Subject: Re: FOR MILLIE (colostomiy)
Your extra bags were like my extra sanitary pads. I always had to carry some with me. Sort of like 'American Epress" don't leave home without them. I wonder why they give us such trouble over our medical records. I had the same thing here. On the colonoscopy report, it said poor prep by cecum, and right side of colon. It said the rest of the prep was fair. She noted no lesions, and told me there was no blockage, but I know something's pretty wrong in there.Are colostomies painful? I feel awful asking, but isn't it hard to look at it for awhile.I've cried a lot today, because I'm so afraid the bowels will block and I'll end up with a bag. I have a bad idea about it now. I nearly pass out thinking of an ostomy, and I very easily could keel over. Millie P.S. Thanks for being able to share your story with me. You truly are a smart and proud adhesion sufferer.
.
> ----- Original Message -----
From: rikam
To: Multiple recipients of list ADHESIONS
Sent: Thursday, April 12, 2001 12:14 PM
Subject: Re: FOR MILLIE (colostomiy)
It sure taught me to carry extra bags. I'll tell you, humor is very very important.
Ended up with the colostomy due to arrogance. Pure and simple arrogance. It is a very very long story that is written somewhere in the depths of my computer. There is even a publisher who is very much interested in a book and keeps bugging me...I need a ghost writer though as I am too emotionally attached to this.
To make a long story very short...I begged not to have surgery, my records said I could not safely have scope surgery regardless of any methods the surgeon used(this was by several surgeons not just the opinion of one), I asked my poor hubby to make the decision...which he did and has since lived with feeling guilty he doesn't even sleep properly anymore because he is afraid...we were basically blackmailed and have a written note by the doctor..."no pain meds unless scope surgery"...hubbys response to this was; he was feeling hopeless, I was in tears because of fear, we told the doctor he'd perforate my bowel, the doc convinced hubby no way...only 1% or less get perforated bowels, gave him the surgical and med records, offered to get his brother in law who is an OBGYN on the phone, but this doctor is the best...the greatest...the top...the utmost wonderful...and gosh he even teaches the procedure...so hubby swallowed it hook line and sinker...he couldn't take me home without pain relief...so he said do it. Doc perforated my bowel (actually it may have been the person he was teaching) when he saw all the smoke etc he got nervous, closed me up immediately and sent me home. Hubby and I knew something was wrong immediately as it was very difficult waking up in recovery...very difficult. So there you have it. Can't get it reversed according to several surgeons as it is not worth the risk and is probably obliterated by adhesions and would take great efforts. Risk of another perforation and of bleeding and infection is just to great as well. Doc can't give a straight answer as to why he even did surgery, my med records ended up well, I'll put it this way...I was given a copy of my med records...later when I went back to get another set they were completly contrary to the set I was given initially. Hmmm...interesting huh? There is a lot more too. Anyway, just goes to show that you don't operate on pain. Chronic pain people take pain medicine. Things that are broken get fixed. Nothing was Broken. Also, this shows the limitations of scope surgery. The spot was in an area that was difficult to get to via scope, difficult to see, and there was an inncessant blocking of view necessitating wiping the lens or whatever it was every few minutes. Also, some docs don't know when to quit and back out or convert to an open procedure. Want to make sure you have a doc that isn't arrogant and will admit when it's time to bail out. Prior to this surgery the doc made a condenscending remark about the previous surgeon who had to back out. shoulda told us something huh? The colostomy has done absolutely nothing for any adhesion related symptoms. Nothing. It has helped absolutely nothing. By the way, I have healthy intestines. Always have.