Hey everyone. Back in April, I had gone into the ER with severe stomach pain, probably for the 20th time in a year. A bit of history before I continue. I've been a type 1 diabetic at this point for 19 years. I didn't always take the finest care of myself. I was 12 when diagnosed, so it was right in my prime puberty years. That feeling of invincibility was there, and for a long time. Needless to say, at 25, they warned me of possible kidney failure. Jump ahead to 28, they started actually failing. At 29, I was on dialysis 3 days a week, 5 hours a session, feeling awful. I couldn't work. Went on Disability. I became very proactive with getting on the donor list for a kidney and a pancreas. At this point, I'm quite high on the list. Anyway, over the last 2 years, I've developed gastroparesis and my stomach got huge from constipation. Would visit the ER countless times in horrible pain, getting horrible cramps, and gas. They would give enemas and make me drink colyte. Needless to say, nothing would work. I kept getting put on the shelf to see a G.I. specialist. Till finally one day, I was told to go down to the ER immediately after dialysis, and was escorted by a doctor and nurse to the triage. Within minutes, I was throwing up and was placed in a room. X-rays and CT scans followed, by 4 a.m. I was told they had to go in as the CT scan showed something very wrong, but they couldn't tell me what it was, just that they had to go in, and didn't know what the outcome would be. Either my stomach would be partially removed or some of my colon. Turns out I had about a foot of gangrene on my large intestine that had to be removed. Woke up and I had an ostomy bag. After a few days, I finally woke up from my morphine deep sleep and realized what had happened. I was horribly frightened and just thought wow, not another thing to deal with. Anyway, I won't tell you what the next few weeks were like as I'm sure you already all know. Now it's July 23rd. I was told 6 months to a year before a reversal was in sight. However, they are worried that because of all my other issues, the reversal might not take. Ultimately, it's my choice. In my opinion, I have my diabetes more under control than I've ever had before. I have to try it. Because honestly, I'm paralyzed with this bag, because it has such a mind of its own. I have so much anxiety. So I'm sure most of you understand why I'd want to reverse it. I guess what I'm wondering is if there is anyone out there who's been through something similar, and if you have any advice or a story to share. Anything would be helpful. I haven't really had a chance to meet anyone in my place. Looking forward to hearing what you all have to share.
Stay strong, my friends.
Kenny
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Kenneth82
Jul 23, 2013 9:17 pm
Past Member
Jul 24, 2013 1:02 am
I've only had my bag since early June, but know someone who had it for about 6 months. It helped save her life, and with her inquisitive how-does-this-work attitude, she treated it as a fascinating part of her life.
Me, I'm not that fascinated, but I've embraced it, even though I've had some troubles with "the bag" as you've identified. For instance, we had planned a trip overseas before my colostomy happened or we even guessed it was in the cards. We still plan to go, even though I bought cancellation insurance. Maybe it was because we wanted to take that trip so badly, it became clear I had to invest time to get on top of the situation. I've been working on that a good deal since discharge, and because I'm a slow learner, have had to learn to deal with several unexpected adventures.
Fortunately, the hospital was staffed with several people who understood ostomies well, and were able to help me manage the bag, replacing the barrier, etc. The supplier of bag products has several videos I've watched, and with the help of an 800 number, am able to talk to someone there for questions that the video doesn't cover.
It can be overwhelming at first. Partly you need support. This site can do some of that, but you should also seek a local support group - try www.ostomy.org, then Support Groups to start. The main page even has a chat link for reaching others with ostomies. Part of it's determination and practice - it gets better, even with ups and downs. You may feel alone now, but you'll find the community is easy to talk with.
I'm still in the learning stage, having explored many options with Hollister products. I'm looking forward to trying from the two other major players. Remember you can get a limited number of sample supplies by calling the manufacturers directly.
Of all the support we have in our area, the weakest link I found was in the home-healthcare phase: the nurses appeared to have no practical experience with stomas - so this group, the videos, & other sources had to fill in. If I had to do it over again, I'd have pushed harder on my surgeon for advice on finding a better provider of the HHC.
This thing is a part of you for now. Don't reject it, as it's similar to rejecting yourself. Changes have happened. Your diabetes can't be reversed, but as you've learned you can manage it. Don't push for reversal too soon. It's fine to get second opinions if you don't believe or trust your current doctors, but get the opinions to know what the markers are for when your body can handle reversal. I've read of one or two people whose bodies did not accept the reversal well, so beware an attitude that says complications won't happen. The more you embrace what you have even if temporary, the better for your morale and the better then for physical healing. You can't get well in a funk.
This may not be you, but for me, I also credit prayer of a number of faithful friends, and my God who carried me through.
All these elements are part of the package. See what others say, and what they say in common. And hang in there.
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Me, I'm not that fascinated, but I've embraced it, even though I've had some troubles with "the bag" as you've identified. For instance, we had planned a trip overseas before my colostomy happened or we even guessed it was in the cards. We still plan to go, even though I bought cancellation insurance. Maybe it was because we wanted to take that trip so badly, it became clear I had to invest time to get on top of the situation. I've been working on that a good deal since discharge, and because I'm a slow learner, have had to learn to deal with several unexpected adventures.
Fortunately, the hospital was staffed with several people who understood ostomies well, and were able to help me manage the bag, replacing the barrier, etc. The supplier of bag products has several videos I've watched, and with the help of an 800 number, am able to talk to someone there for questions that the video doesn't cover.
It can be overwhelming at first. Partly you need support. This site can do some of that, but you should also seek a local support group - try www.ostomy.org, then Support Groups to start. The main page even has a chat link for reaching others with ostomies. Part of it's determination and practice - it gets better, even with ups and downs. You may feel alone now, but you'll find the community is easy to talk with.
I'm still in the learning stage, having explored many options with Hollister products. I'm looking forward to trying from the two other major players. Remember you can get a limited number of sample supplies by calling the manufacturers directly.
Of all the support we have in our area, the weakest link I found was in the home-healthcare phase: the nurses appeared to have no practical experience with stomas - so this group, the videos, & other sources had to fill in. If I had to do it over again, I'd have pushed harder on my surgeon for advice on finding a better provider of the HHC.
This thing is a part of you for now. Don't reject it, as it's similar to rejecting yourself. Changes have happened. Your diabetes can't be reversed, but as you've learned you can manage it. Don't push for reversal too soon. It's fine to get second opinions if you don't believe or trust your current doctors, but get the opinions to know what the markers are for when your body can handle reversal. I've read of one or two people whose bodies did not accept the reversal well, so beware an attitude that says complications won't happen. The more you embrace what you have even if temporary, the better for your morale and the better then for physical healing. You can't get well in a funk.
This may not be you, but for me, I also credit prayer of a number of faithful friends, and my God who carried me through.
All these elements are part of the package. See what others say, and what they say in common. And hang in there.
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Posted by: lovely
I just finished reading the Ostomy Tips Book under COLLECTIONS at the top of the page. I did not realize how much information was there. It covers a lot
of things that people have questions about. Hope this may answer some things for people. Best wishes and stay safe
Bill
Jul 24, 2013 7:14 am
Hello Kenneth82, Thank you for posting your story so far. It is interesting that most people who come onto a site like this will have stories like this to relate. The process of telling the tale can sometimes be cathartic and it can also help those others who may feel somewhat alone with their conditions. Also people who have had ostomies for a while can occsionally be helped and supported by a reminder of what it was like in those early days. The overwhelming nature of what you have been through can leave you feeling as you do, with the thought of a reversal keeping the light on at the end of the tunnel. However, I urge you to take heed of the wise words of Tacomonster and embrace the ostomy whilst you have it. Prepare yourself for a possible worst-case scenario where a reversal may not be possible or desirable. If you coped with diabetes I'm sure you'll be able to adjust to the ostomy - it just takes time and experience and perhaps a little help from friends.
Best wishes
Bill
Best wishes
Bill
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Sophie96
Jul 24, 2013 1:55 pm
Hi there kenny, it certainly sounds like youve been through alot! Like yourself, when I first had my ostomy, my first thought was when are they gonna be able to take this away again? Im now a year down the line and when people ask me about it, I now tell them that I dont want the reversal!
The first few months were certainly hard and I was also anxious about leaks etc. I would wake up every day and the first thing I would do is check to see if i'd leaked but as time goes on that goes away. As time goes on your ostomy will settle down and then you'll get to know how it works better and youll learn to look after it with very few problems.
For me, if I had mine reversed, then my crohns disease would most likely flair up again and take me back to where I was before I had it which means I would have gone through it all for nothing! For me, its not worth the risk so what I would say to you is if youve been told that it will be six months to a year before they can reverse it anyway then wait untill that time before you make your decision about whether you want it done.. By then you might decide that the risk isnt worth it because youll see that you can actually live as normally as anyone else can.
Sophie x
The first few months were certainly hard and I was also anxious about leaks etc. I would wake up every day and the first thing I would do is check to see if i'd leaked but as time goes on that goes away. As time goes on your ostomy will settle down and then you'll get to know how it works better and youll learn to look after it with very few problems.
For me, if I had mine reversed, then my crohns disease would most likely flair up again and take me back to where I was before I had it which means I would have gone through it all for nothing! For me, its not worth the risk so what I would say to you is if youve been told that it will be six months to a year before they can reverse it anyway then wait untill that time before you make your decision about whether you want it done.. By then you might decide that the risk isnt worth it because youll see that you can actually live as normally as anyone else can.
Sophie x
Past Member
Aug 01, 2013 1:08 am
So very, very well said, Taco. I wish I'd had you to talk to 4 years ago along with the many friends and supporters on this site. I am fine with my bag now and the thought of reversal is a dim, distant dream. Too many other complications now...high blood pressure, renal failure, and liver damage to even count my ostomy as a health issue. I'm just so glad I do not have to add diverticulosis to that list. Thank you for posting to help Kenneth and you, too, Bill and Sophie.
Hang in there, Kenneth, it really does get better with time and even may become second nature.
Loretta
Hang in there, Kenneth, it really does get better with time and even may become second nature.
Loretta
My Ostomy Journey: Ryan | Hollister
