Anyone have trouble with obstructions? Seems like this is going to be a part of my great new quality of sucky life. Had ilio in March..1st I had a partial obstruction a week and a half later..I was lucky that after 10hrs in hosp. and after drinking the CT prep it opened and released on its own..not realizing that this was just the beginning of the end..May 18 was rushed by ambulance at 3:00am after vomiting about 6 times with severe pain and realized I had an empty bag since about 4 in the afternoon..I should have known but was in such pain I just overlooked the fact that nothing was emptying in the bag..with an ilio this is almost impossible as something is always in there.. Well turns out they did a full open surgery this time..no laparoscope..I believe they really can't see the full picture through a lap as this was seriously missed after 3 prior surgeries..I had adhesions from top to bottom wrapped and strangling my intestines that had to be cut away..also strangely they found a mass attached to my intestines..not cancer thank God but still it was also obstructing..consisted of fatty tissue..a piece of old intestine from a prior surgery and it was starting to turn black and rotten..nice..this never showed on any of the 5 thousand tests and any of my previous surgeries..Now I am cut from my crotch to my breasts..I hope they finally saw everything..sad part of this is that I understand this can happen again..I spent 2 weeks in hosp. and 5 days in ICU with breathing problems..I once weighed 165..I am now a voluptuous 115lbs and holding. There is no way in hell you can gain any weight with this as soon as you eat within 1hr it leaves you..I must empty this bag at least 6-8 times a day and I hardly eat or I might as well just connect myself to the toilet..I don't know how anyone can possibly have much of a life with this..I am so depressed I curse when I wake up in the morning because I know what my day is going to be..my no life is really getting to me..Don't have too many friends anymore as I am no fun and can't do anything and there is really nothing to talk about as they have real lives and you have nothing but a bag and a toilet..I missed my grandson's wedding..parties..showers..I can barely walk my dog and he is just a gentle little pug..thank God for him because he is all I have left..his love is unconditional..I think if he died I would want to go with him as I see really no future left for me at all..Since I lost my colon 3 yrs ago I have lived a life of hell. I used to laugh and go out and have friends..Now I have no friends cry and a hopeless recluse a prisoner to my house..I am in pain constantly from all the scar tissue and surgeries..can barely clean my house it is like a pigsty I hate it..I would rather sleep then look at it..At this point I don't even know who to go to..Don't trust any of the surgeons I had..I don't have a gastro I trust..I have been all through NJ and even Cornell in NY..No one to refer to but my primary care and even he is out of recommendations so I am my own advocate in this..I live alone so there is no moral support whatsoever..my kids have their life and I don't want to burden them with this crap..My husband died 13 yrs ago..at first I felt bad for him but guess what he is the lucky one because I took care of him and now I have no one..My mother is 86, a little mental but in better health than me but she still depends on me to help her..I can't even take care of me..she is still looking to date and meet someone..good for her..If I can't do for her she does not even come around to see me because I am no fun..She is loaded and can hire people to help her..I helped all my kids get a start so I am broke..sick and disabled with no chance of ever making anything up again..I think my job in life is truly done here..I just wish it was over..Not brave enough to end it I just know next time something happens I am just going to let nature take its course because why waste more time and space when there is nothing you can do about it..yes it helps a little to talk to people with this condition but their circumstances are much different..they have husbands or wives or devoted good friends..I have a dog..This was just supposed to be a short comment but I seem to have just kept going..I am sure not too many people will read this or even comment but I don't care because I am so used to it..I am probably even writing this in the wrong place..I should have put it in a blog but did not plan to keep writing..o well..This is my typical way I wake up in the am..now I must make it through another miserable lonely disgusting day..bye for now..Judy
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Hi Bunkie, I've had an ileo for almost 26 years now. And when I want it to slow output, I eat different foods like bananas, or applesauce, a slice of toast with peanut butter, oatmeal. Those seem to help me. Hang in there, it gets better. Ron in Mich.
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Bunkie....you're wrong, we do care !!
My sad woman, you're alone because you choose to be, you must remember that. You have children and grandchildren and whether you want to believe it or not, they need you.
I've had an ostomy for almost 12 years, survived multiple blockages, flares and associated illnesses, but have decided that I was meant to live, how I do it, is up to me.
My marriage didn't survive my illness, so although he's not deceased, he might as well be in my life. I had my "scream in the closet, cry in my beer, feeling sorry for myself moments, we all do .....But it's up to you to stand back up. If you can't, seek medical help. There's no shame in taking responsibility for your life. Once I accepted that "Woe is me", wasn't working, I decided to change gears. Over time, I became more determined to look beyond the moment and begin to envision, what could be.
When the sun comes up, you're given an opportunity to do something constructive. Doing at least, one constructive thing a day, leads to more and more. Life doesn't promise that you'll be entertained or have your hand held along the way, nor should you live, defined by illness or acceptance of others. You create your own self-worth, by the things you do, in spite of the pain.
You are someone who overcomes struggles on a daily basis, and yet you can make a difference in the world. It doesn't have to be a "HUGE", earth-shattering, Nobel Prize-winning event, a single smile to a stranger, a visit to a nursing home, a day of volunteering at the library or hospital can be the beginning. Invite a neighbor for lunch, offer to keep a child or meet a school bus in the afternoon for a single mother..the list is endless. When you give selflessly, it is returned to you many times over.
You can't become a recluse and not be lonely. Doing the same thing day after day, only assures you the same outcome. Give "living" another chance. Buy a paper, look at all the community-sponsored programs that would tremendously benefit from your help. They need your inspiration, opinions, suggestions, and your presence. Once you're out of your protected shield (your home), you may be surprised at all you've missed. Your pain will decrease immediately once you're not focused on it, your energy level will surely increase once your body realizes that you're mobile again. Your dog will love the uplifted attitude (even animals feel the funk !!!) and the walks that might be in store.
I promise you, avoiding life in the hopes of dying, doesn't work !! But it sure goes a long way in isolating, restricting, and destroying any social interaction, you should be enjoying with family and "new" friends waiting to meet you.
I'm on your side, here anytime you'd like to chat. You are not alone, there are thousands of us, some better, some the same and many so-o-o-o much worse. I'll not give up on you!!
Your sister in "ostomy", BEG
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Bunkie, listen to what everyone here is saying. Things will definitely get better in time. We are not blowing smoke at you but speaking from our own experiences. Since my ileo 18 months ago, I have been able to do everything I wanted, including eating anything, traveling halfway around the world, and playing competitive golf. I can even go to our NJ governor's town hall meetings and hear him put the Democrats to shame for their tax increases. What's more, I have a few years on you. So, for your own sake and your family, consider changing your outlook on your condition. Set a few small goals for yourself and build on your successes. You can learn a lot by staying in touch with the folks here, many of whom have seen everything you're dealing with and a lot more.
Prime
Hello Judy,
It's really heartbreaking to know that you feel so down at this time. It is hard to adjust to so many changes and challenges, but it does get better. Please don't think about letting "nature take its course" next time you have a problem. We can't take that type of bad decision back. Try thinking about who gives you the most pleasure in life and how you want to be there for them. See how the will to live vs. the desire to just give in can change your life in such a positive way. Become a success story to yourself and others and believe that you will get better with each passing day with a positive outlook. There are many of us here who are cheering you on. One day at a time my dear lady. You are not alone. Take care and feel better......Smylin
My name is Tess and I had emergency surgery in November of 2010.
I have had Crohn's Disease for 39 years and the 40th year was the limit. I had to have my colon removed because the ulcers in my colon burst. I went in for a colonoscopy and they found that the waste was leaking into the cavity. If I had waited any longer, I would not have made it. And so I woke up with an ileostomy - I just wanted to die -
I cried all of my stay at the hospital - 3 weeks! I did not want to live with one of "those things". My self-image was in the toilet and I felt like a freak!! God, this was horrible! The worst thing to happen to me in my whole life, etc, etc!!
With the help of my guy, friends, and loved ones, I started to see just how blessed I was - I'm still here and it beats the alternative.
I don't feel as hopeless as I did when I first woke up in the hospital. Is it pleasant - no - is it inconvenient - yes! But I find if I wake up each day and thank God, count my blessings, and not pay attention to my negative side - life is good.
The thing that most upset me is that I thought I could never leave the house - I was wrong. I thought I would never ride my motorcycle again - I was wrong. It really is how you wish to look at things.
I have had quite a few blockages - at first, I did not know what that awful pain was and I was frightened that it meant another operation. I finally had to call the surgeon. I found out what it was and I now am careful of what I eat - and if I do get a blockage, I run the hot shower on the area, massage around the stoma, and drink lots of coffee - that all works for me.
You will just have to see what works for you.
I feel that attitude is 2% of what happens to you and 98% of how you handle it.
Good luck,
Tess
I really have nothing to add, but we've all been through it and you have to be optimistic. Look at the positive things in your life, not the negative. You will see that the good far outweighs the bad.
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At the time of reading this I note that your post has had 177 other people reading it.
I would like to make a comment or two on my own behalf and perhaps reflect what the many silent readers might also feel and wish to express.
Firstly I would like to thank you for writing down your experiences, thoughts and emotions surrounding this most difficult of subjects. I was tempted to say that I 'enjoyed' reading your account. However, 'enjoyed' seems to be a most insensitive and inappropriate concept in relation to what you are going through. Let's just say that I was extremely interested in what you had to say and I thought you expressed it very well. It is probable that most of us have had not too dissimilar experiences, which can lead to the sort of thoughts and emotions that you describe. It is therefore supportive and comforting to us to be able to 'share' your experiences via the written word. Sometimes, when emotions are overwhelming I find it can help to try to put the concepts into rhyming verse. This assists me in that process of translating the effervescent, uncontrollable prose, into a seemingly logical yet emotional format. To date I have published several books of rhyming verse which might give you some idea of the intensity and chronicity of strugling with my emotions.
It is my belief that controlling the negativistic emotions is all part of the overall 'management' of life's 'crap'. If I can turn the negative into neutral then it becomes a much smaller step to having a few positives.
This psychological side of the 'ostomy' condition (for me) makes up about 80% of the stress related factors. Once I've got my head around the emotional problems, the physical side can be taken in my stride.(relatively speaking) Personally, I am not short on physical pain, discomfort and downright embarrassing moments. However, I would rather have physical pain than emotional pain any day. The physical side of things upsets my lifestyle - the emotional side usets the whole of my being.
Those fellow ostomates who have replied to your post are much better placed than I am to talk about the specifics of your own and their conditions. However, I did note that they too are quite clearly saying and implying that perspective and attitude is very important. If you can swing it from negative to neutral and maybe to slightly positive, then the physical and relationship aspects become a positive force in your life and help with all the other stuff you have to 'manage'
I hope you are able to take on board some of what they say, even if it may be difficult for you to see past all the physical, cognitive and emotional pain that you are experiencing at the moment.
Thank you once again for sharing, as now we can all have the opportunity to empathise.
My very best wishes for you in your struggles.
Bill
It does upset me when I read people who say that, but we are all different...
Yep, every line is right. You're still a newbie and I remember being 29 and being told about having an ileostomy. I don't actually think I remember the words, I was sooooo ill and didn't care one bit, just to get well. But I have let a lot of people go in my life as well, especially when I was ill because being in my early 20s, I didn't want friends to be stuck at home like I was. I wasn't well enough to do much, but run crawl to the toilet. I volunteer at my local Colo Association. Well, you ain't heard nothing till you hear some of the stories. A lady rang for her supplies crying that she deserved to be in a rubbish bin. OMG, to think you should be in a trash bin, that's soooo sad and also not well-informed. Are there any support groups you could join in your area? I mean, they aren't all about doom and gloom. But you're not ready, I suppose. Hun, listen to what people are telling you in here. We are the experts, really, no one else... I wasted 4 years of my life because I had to make the choice of stoma or no stoma.
I was sitting in the sun feeling soooo miserable and yes, underweight, and thought, "OMG, this can't be it, this can't be my life." That moment and the weight lifted off like something went BANG. I rang my surgeon, I was actually excited and couldn't wait for my operation... You've got kids, grandkids, OMG, you have sooooo much. Please, when things settle, hit life right in the face like you've never done before, my darlz, 'cause you look around, guess what? The world hasn't stopped, it's still going. These things are a challenge, but please don't give up. FYI, you're talking to a bungee jumper. I will have to put it up when I know how. Good luck, people care. You have family. xxxx Mooza Australia
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I am so sorry that you are so miserable. When I first found out that I was going to have to have surgery and have a bag, I was terrified. But it wasn't nearly as bad as I thought it was.
I did have 2 obstructions. The first time, I didn't know what was going on, but the pain was horrible. As far as adjusting to the bag, I did well with that. I was thankful it saved my life.
I had diverticulitis and to make things worse, I had a hernia that we learned later was constraining the colon.
Anyway, I adapted to the whole situation rather easily. I think we choose how we want to handle things. However, I agree that despair comes on us rather quickly and will consume us if not recognized and turned around. Just make yourself do something. Look inside yourself and realize that you are worth a lot to yourself and your family. You can be brave and think "I can handle this because this is who I am. I am the type of person that shows others how to take adversity and how to live." Then you might see adversity in a different light. We can always find someone worse off than us.
Be brave, say "I can do this."
I have had a reversal now. When it came time to make a choice, I debated with myself whether I wanted to do that or not. I was healthier than I had been in a long time, I felt good and decided that the bag did have its advantages. In the end, I decided on the reversal and I am doing fine.
I wish you well. As Einstein said, "You can't keep doing the same thing and get different results." Change it, you can do it. You have friends here that are willing to help you.
Live your life. You would be surprised at the many people that would trade places with you.
Some are dying and would love to have the chance you have.
I am rooting for you!!!!
I am so sorry that you have all this hanging over you- I wish that I could let you have some of my positive outlook- I was given 2 choices, death or a permanent ileostomy, I didn't hesitate for a second- I have some down moments but I really only cried when they drew the little black circle on my belly before my surgery- I knew that was the spot and there was no turning back- I survived the surgery and yes I felt like I was cut in half- I am trying to figure out how to help you, I think you need to hug that little dog of yours and promise him you are going to live life and be the person you can be. You have so much to live for and someday soon I hope you realize just what you are worth.
Lisa
Adhesions? Oh yes, I know about adhesions. My insides are now one big solid mass. I had surgery for colorectal cancer stage 3 in 2003. My first obstruction was in the hospital during the 2nd week. From there on, I had the occasional blockage until 2005 when I had a huge blockage and spent 5 weeks in the hospital when I had the adhesions divided. I have had many blockages since and am now having them almost weekly. My surgeon tells me that there is nothing more that they can do for me. That is because last year on January 30, I entered the hospital again for a small bowel resection to remove a 100 mm long damaged section from the radiation treatment. This didn't go to plan as the adhesions were so bad that the bowel perforated and I ended up with fecal peritonitis, multiple infections, septic shock, and finally renal failure (again). I spent 7 weeks in intensive care in a coma and 4 months in the hospital. However, I am very fortunate to have a wonderful wife who has always been there for me and has never complained about any of the disruption to our lives. In fact, the opposite applies. We have traveled the world since then, lugging all the things we need for a colostomy, including my irrigation apparatus plus continence supplies (I have prostate cancer too). I won't say that I have never felt sorry for myself, but not ever for long. The alternative to my life now is no life at all. Well, at age 78, I don't have a great deal of life left, but I want to get as much more from my life as I can, pain, vomiting, and inconvenience notwithstanding. I can understand your frustration because unless my wife takes me, I too am housebound as I am disabled as well. Still, I feel that our lives are what we make it. I was told that because of dreadful spinal damage, I would never walk again. (I have had 5 spinal surgeries) Well, I DO. Not very well or very far, but I do sort of walk on callipers.
Keep your chin up, Judy. Make goals for yourself and work towards them. Life is precious, and we are here only once around. You have more friends than you realize.
Doug
3 years and counting - YAH WHOO! Only had one blockage - and that was my own fault for being a little piggy at Thanksgiving! My first holiday meal after 3 loooooong years of not being able to eat! But I have since learned that exercise and lots of water really help. And there is a balance of too much fiber and not enough. You will find what is perfect for you! Don't get frustrated!
Take care and keep the faith! It is just so amazing to be alive and not in hospitals anymore!
Hugs - Marilyn
Feel so very bad for you. I have had an urostomy for almost 4 years and have been where you are. It is still rough, but I've moved on and deal with it as best I can.
I too have obstructions, in fact was in hospital 3 weeks ago, so it happens with both kind of surgeries. Just don't let them operate unnecessarily, like they wanted to do on me. I keep up with as much as I can of facts and experiences from other people. Some doctors will take advantage - fortunately I have good doctors that I trust.
Don't talk about giving in - just do the best you can, talk to others - everyone has helping points to share. You are right, these surgeries do cause other problems, now I am seeing a kidney doctor - seems one of my kidneys is not operating at 100% so am now going to have to face whatever this turns out to be.
I guess the way we have to think of it is that it's better than the alternative - lost my sister-in-law one year ago to cancer, she never had a chance last week my husband lost his best friend who was in his 60's also to cancer, so am just glad to be here.
You are so right, your life changes drastically, it revolves around your ostomy, changing bags, when, where will you have an accident, I can relate believe me, but again just do the best I can - I know I've been in the hospital many times with problems related to this surgery, but it's part of our body that we deal with from now on.
Don't give up, enjoy your little dog - I have a Maltese and he's the love of my life - makes me smile all the time!
You are not alone, there are many of us out there and some are young, young people who will deal with this from their teens or younger. At least we waited till we were older to get this!
It's very hard not to get depressed, but get some help if you need it - I did for a while and it did help. Also, all the chat lines help.
You just wake up and look outside - plant some flowers - something beautiful to look at and take your little dog for walks - enjoy what life we all have left.
You take care - don't give up!!!
Shirley
Hi guys.. Thanks a lot for all your input.. I know a lot of you can relate to these very bad down times.. I will keep trying although I know my life will never be the same.. Just have to learn to live very differently.. Again thanks for caring.. Judy
Hi, if you need an excellent doctor, let me know. I have one of the best surgeons in NY! Hang in there, it will get better! xoxo
Hi.. If you have the name of a good doctor in NY, I would love to have it as I am having so much trouble.. I can hardly eat without a great deal of pain since this last surgery in May.. I was going to a surgeon in NY Presbyterian Cornell.. I had one of my surgeries there before the ilio to repair a large hernia and he also had to lift all my small intestines up with a large piece of mesh holding them up.. He also put me on injections for a year to see if I could control these remaining bowels but it didn't work well.. So I had the ileo in NJ in Cherry Hill.. UMDNJ.. Not even 1 month later, I had this severe obstruction from adhesions going almost all the way to the stoma.. Also removed a small dead mass of fat and intestine.. I was cut from bottom to top.. Still so much pain.. Had the ileo in March.. It is almost 4 months and I can't gain a pound because it is just too painful to eat.. Not so much the stoma but inside my abdomen.. Maybe there are more adhesions.. Just not livable.. Thanks for your concern.. Judy
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Just think if all of us could love each other as our dogs love us, there would be true peace on earth!
Eddie
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Hi all, it brings me to tears as I read this. My Beagle/Basset mix, Dazee, is at her last legs and failing.
She can't hardly walk and is always thirsty, but always ready to go for a walk. I wish I had her strength. Ron in Mich.
Hi. Bunkie. I thought my urostomy would be the start to my new life! How wrong was I?? I live in pain still after 6 years!! The strange thing is it's not actually the "bag". It just seems bowels and stomach pains let me down big time&hearts
Yes!! Many times! I've had my ileostomy since 2005 and it seems like within the last 5 years I've had more partial bowel obstructions than normal. Long story short, ask your doctor for a script of Lactulose!! It's a coconutty, not bad tasting at all stuff that I drink the minute I feel constipated. About 30ml of it, so not much at all. I keep it in the fridge. It literally starts flushing me out within 20-30 minutes! It has been a godsend instead of having to go to the ER and wait for hours, get flushed with IV fluids, etc. I'm not saying it works for everyone, but it's worth a shot! Good luck to you!!
Hi Bunk, I've had a J-pouch for 19 years and have been obstructed only 6 times, but that was horrifically painful and required hospital stays. I've learned the foods to avoid but still get blocked. After surgery, the bowel shut down and led to distension and vomiting. It took a full year at least for things to settle down and work semi-normally. I never got blocked until 2 years after surgery. You might want to pester the surgeon and get answers as to why that's happening so soon. Hope all is well otherwise. Rob.
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Hello Prime Boynn
Please, are you able to tell me what the orange star denotes which appears against your profile icon on this post?
I have noticed the orange star on one or two other profile icons while reading the posts on this site - but the connection or the meaning of the orange star has not become apparent to me.
I wish you a good day.
Thank you
Jayne