I need some advice or maybe just some support! I am three years in with an ostomy. I have tried to accept it and live with it, but I hate it! My colorectal surgeon said he would not ever reverse me considering I have had four colon resections and almost died from the last one. I have Crohn's disease. I have to admit I was a mess before the ostomy. Always in the hospital, missing time with my family due to severe pain. I have found a surgeon who will reverse me, so what do I do? My family is very much against it, but they are not living on the other side of this bag! I don't think I have had a decent night's sleep since I got the bag. Always worrying if it will leak or break open, which it has. And the noise it makes sometimes is embarrassing. What do I do?
I hate the bag too, and I know where you're coming from... anything to get rid of it and feel normal again. But if you have a reversal, you might go back to the same thing you were going through before... and eventually end up with another ostomy anyway. Only you can make that decision, and I don't envy you having to make it. I would be torn as well. The only thing I can suggest is that you try to think logically about it and not let your emotions and hatred of the bag rule your decision. Good luck to you in whatever you decide. My sympathy and my heart go out to you.
Jemmy,
Living with an ostomy is hard. Period. However, there are things you can do to make your life a little less miserable. More on that below. I too, would love to be reversed. But I was the victim of an unnecessary surgery, and lost three perfectly viable organs because a surgeon thought he knew better than a 60-year-old woman knew her own body. I was lied about, lied to, had pertinent data withheld from me, (lying by omission) and I was poisoned with drugs to combat a disease I did not have and the test results -- PROOF -- were in the doctor's hands. I refused to take those drugs orally because of past experience but I was given them by IV being told it was nutrients when it was the same drugs I had refused. So for me, the ability to be reversed was lost because I will die before I ever set foot in any hospital again, for any reason. The satisfaction of apologies and compensation will never be enough to get me past my loss of faith in the medical industry.
Your situation is definitely different than mine. You appear to have had a number of attempts and "chances" to do away with your ileostomy. Your surgeon appears to be honest with you. No one ever really understands what living with an ostomy is like until they themselves find that stoma on their own belly. But I don't think I could risk death to do away with this major inconvenience. I seem to be unable to risk reversal just because of an inability to trust.
Now, about living with the ileostomy. I have not slept more than 4 hours in a stretch in four years, and for the first three years, it was not more than 2 hours at a time. I have learned that if I tape the bag around the edge of the part that adheres to the body, it helps to prevent leaks which allows me some peace of mind. I have found that if I sleep in the recliner half upright, I have fewer issues with the bag breaking open. An upright bed could serve this same purpose. Anti-gas products (Beano, Gas-X) can help with the noises, and eating on a regular schedule also helps that issue. An empty stomach causes more noise. And, although I am not a fan of medications, antidepressants can help with the anxiety of dealing with the real-life issues of an ostomy, as well as help you to sleep a bit more, and better. Ask your doctor for something like Xanax. I have used a 1mg dosage for the times when the anxiety seems to be more than I can handle, and it has helped me get to that four hours of uninterrupted sleep. I'm aiming for eight! Do you have legal medicinal marijuana? You might want to consider it, as modern medicine seems to be turning to the belief that it is more helpful than any narcotics. I'm in North Carolina, so it's not an option here, but if it were I would at least try it before Xanax. But, that's just me, and only you can decide what avenue you want to travel.
One more thing. You say your family is against your surgery. You are right that only you can decide what's right for you, but you do have folks in your corner, and you should at least consider their loss, should things not go as planned. They love you. Never lose sight of that. It's important, too.
Peace
Nancy
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Thank you for your response! The general consensus with the doctors is that I will go back to the same misery I was in before. And they also say whatever is in your bag will be coming out your bottom! And that is always liquid and never solid, so incontinence is the other issue. I am going to the consultation and see what the surgeon has to say. I only have about 8 inches of my large intestine and some of my small intestine gone as well. Do you ever have a problem with your bag blowing up like a balloon at night? Mine is fine until I go to bed and it gets so big and hard I have to get up several times to relieve the pressure. I don't mean to be too descriptive, but if anyone knows what I am going through, it's you.
God bless,
Jemmy
Thank you for your response! The general consensus with the doctors is that I will go back to the same misery I was in before. And they also say whatever is in your bag will be coming out your bottom! And that is always liquid and never solid, so incontinence is the other issue. I am going to the consultation and see what the surgeon has to say. I only have about 8 inches of my large intestine and some of my small intestine gone as well. Do you ever have a problem with your bag blowing up like a balloon at night? Mine is fine until I go to bed and it gets so big and hard I have to get up several times to relieve the pressure. I don't mean to be too descriptive, but if anyone knows what I am going through, it's you.
God bless,
Jemmy
Thank you for your response! The general consensus with the doctors is that I will go back to the same misery I was in before. And they also say whatever is in your bag will be coming out your bottom! And that is always liquid and never solid, so incontinence is the other issue. I am going to the consultation and see what the surgeon has to say. I only have about 8 inches of my large intestine and some of my small intestine gone as well. Do you ever have a problem with your bag blowing up like a balloon at night? Mine is fine until I go to bed and it gets so big and hard I have to get up several times to relieve the pressure. I don't mean to be too descriptive, but if anyone knows what I am going through, it's you.
God bless,
Jemmy
Thank you for your response! The general consensus with the doctors is that I will go back to the same misery I was in before. And they also say whatever is in your bag will be coming out your bottom! And that is always liquid and never solid, so incontinence is the other issue. I am going to the consultation and see what the surgeon has to say. I only have about 8 inches of my large intestine and some of my small intestine gone as well. Do you ever have a problem with your bag blowing up like a balloon at night? Mine is fine until I go to bed and it gets so big and hard I have to get up several times to relieve the pressure. I don't mean to be too descriptive, but if anyone knows what I am going through, it's you.
God bless,
Jemmy
Thank you for your response! The general consensus with the doctors is that I will go back to the same misery I was in before. And they also say whatever is in your bag will be coming out your bottom! And that is always liquid and never solid, so incontinence is the other issue. I am going to the consultation and see what the surgeon has to say. I only have about 8 inches of my large intestine and some of my small intestine gone as well. Do you ever have a problem with your bag blowing up like a balloon at night? Mine is fine until I go to bed and it gets so big and hard I have to get up several times to relieve the pressure. I don't mean to be too descriptive, but if anyone knows what I am going through, it's you.
God bless,
Jemmy
Dear Jemmy - Have you consulted with a good ostomy nurse? It seems to me that it's possible you haven't been provided with the professional advice you need, and nurses who specialize in ostomies are specially trained to address these issues. The doctors aren't. My ileostomy is new, and I just met with an ostomy nurse today who helped me troubleshoot a leakage problem. There are all sorts of products to help with that, and a good ostomy nurse will look at your stoma and assess the situation.
With regard to the gas issue, have you tried the Osto EZ vent? That's a venting system that can be manually added to any bag. You place the vent near the top of your bag, and you can easily open it and let out the excess air. Maybe you already are using something like this.
They also make bags that have venting systems that expel the air automatically, but these tend to get clogged after just a day.
If your doctor hasn't referred you to an ostomy nurse, a good medical supply facility that is affiliated with a hospital might have an ostomy nurse that they refer people to.
Sites like these are great for getting general ideas and tips, but to effectively address specific situations, an expert is really needed to look at your particular case.
Have you tried any alternative therapies to try to calm your intestines? If you can afford it, you might try acupuncture.
I wish you peace!
Best,
Tardis
Hi Jemmy, were you having rectal issues from Crohn's prior to surgery? If so, they will probably return JMHO. My rectum was removed when I had my ostomy surgery because it was just worn out by Crohn's. I suggest you have a serious convo with your surgeon and Crohn's doctor before you make a decision.
See what works for you!
Jemmy, the Doc is right as far as what comes out - it is directly related to what goes in, and some foods (higher fiber) create a thicker output than others like sugar and salads, which create more liquid output. The more large colon you have left, the more likely you are to be able to have more solid output, as the large colon is the part of our digestive system that absorbs liquids. I have no large colon left, but I do have my entire small colon. However, the likelihood of anything other than liquid output is limited at best. Incontinence, however, is directly related to the function of the sphincter muscle, and if yours is intact and fully functioning, you have a better chance at controlling your output and avoiding incontinence. The output could well be diarrhea, but you would have the ability to be aware of the need for a toilet and the ability to avoid accidents. As far as the bag blowing up - it really depends on what you eat, but I have discovered that pretty much everything emits SOME gas, thus the blow-ups. According to what I've researched, even a healthy bowel emits gas - AKA - farts :), at least 14 to 20 times a day!! I never realized I was that full of it! Anyway, you might consider beverages with no bubbles, but I do drink sparkling water, and you should try Beano or Gas-X before bed to see if it helps. Good luck, and keep your chin up.
Peace
Nancy
