How does a person adjust with an ileostomy?
I've had this over a year now and it doesn't seem to get better. I think sometimes how I'd love to be the person I was before. I do have a chance of reversal but I'm so scared to go through this again. When I had this surgery, which was a result from a small bowel obstruction and a burst appendix, I remember how I had to regain my walking skills again and I couldn't eat without being sick to my stomach. Also had a blood clot to right lung. I had therapy for 4 months to finally walk again and be a little of who I was. I couldn't work in the medical field anymore which made my life difficult. My daughter had to take care of me the first 6 months of this illness. Then my insurance capped out. I just don't want to put family in a burden again with me and I'm also afraid of surgery again. But I don't want to live this way also. I think about people who can't have it reversed and then I think I am a lucky one to be able and try to have it done. I am getting married in October of this year, to a wonderful and understanding man who says it doesn't matter one way or another if I have the surgery. But I don't want to be a burden on him, if things don't go the way they should. Yes I'm in a bind with all these mixed up feelings. I don't know if I could live this way the rest of my life and I don't know if I can face another surgery and be helpless for awhile.
It seems like you are being torn in multiple directions with so many 'decisions' to make. You have had this for over a year and you have what sounds like an understanding partner that is supportive. Personally, I would wait, don't rush anything until things sort themselves out. You certainly don't want to rush into something that you might regret. A reversal sounds great, but often it does come with issues unto itself. Make sure you get thorough medical advice about the pros and cons of reversal in view of your specific circumstances. I am sure others on this site will provide you with greater insight on this matter.
X_
MeetAnOstoMate is a remarkable community of 41,452 members.
“Every morning with my coffee, I read here and feel wrapped in warmth - I hardly post, but it still feels like family.”
“Our oncologist literally wrote down the link; they said more patients need this website.”
“This place pulled me out of the dark. I went from lurking to living again.”
“At 3am, someone’s awake somewhere in the world. I’m never alone here.”
Well it's just coming upto a year since I had my emergency stoma. Since joining MAOM I have learnt all different kinds of ideas to help with the stoma. Not only that I have made a lot of good friends who I can talk to. The beauty of this site is it's not just giving tips and ideas we talk about anything and everything. So thank you for giving us a great site. XX
I know that going through any kind of surgery is a huge decision and that living with an ileostomy can be a nightmare.
Good luck with your wedding!
Learn how convex skin barriers work and what benefits they offer.
I understand what you're going through. It's been 5 months of having an ostomy for me and it's been a nightmare, with lots of ops and healing involved, I too have the chance of a reversal.
You're very lucky you have supportive family around you and a good man, be thankful for what you have.
There's not 5 months in the day where the ostomy isn't intruding in my life, I hate it, have PTSD from all the trauma, BUT, I live for the day I can get rid of it, no matter what healing pain I have to go through, it will be worth it to be the old me again. I understand you're scared, that's totally natural. Like you, I don't know if I can have this for the rest of my life, it's been so hard these last 5 months, so having dark thoughts....I identify totally.
Stay strong, be brave and have hope for your future. I wish you luck.
Thank you everyone! Yes, I am lucky to have people support me. I have a wonderful guy, children, and a very supportive sister also who are always there for me no matter what. I tend to feel sorry sometimes for myself and ask why this happened to me and what I did to deserve this, and I've found out it makes matters only worse. I am excited about my wedding but have the worst fears of my ostomy leaking, and it puts a little dark damper on me. Any ideas on how to make sure I'm protected that day? I thought about using a lot of tape to keep the seal on. I think with the seal and the leakage and accidents is what I hate the most of all about having this ostomy. Weeks don't go by without this happening. I get so embarrassed and it brings me so down. I want that day to be special and afraid this will happen like usual. Anyway, I appreciate all your inputs and thanks a lot everyone.
My Ostomy Journey: Ryan | Hollister
I would take Xerxes' advice and perhaps wait a bit. I too (and probably MANY here) have gone through the same feelings and difficulties you're going through. For me, I also wanted a reversal (desperately) but when I had my procedure done, the J pouch was a relatively new procedure that was done in three stages. That meant three separate operations/hospital stays and too much time out of work for me to consider at the time. As the years rolled on, I discovered that many times this is done as one procedure AND often times arthroscopically, which would obviously greatly reduce the healing time. Again, I seriously thought of having it done but came to the realization that after all those years had passed (we're talking a time span of about 20 years here), I was MUCH more comfortable with my ostomy, and maybe I'm just lucky but my "accident" occurrences had really dropped to near zero. Still have the occasional "oops" but all in all, I'm pretty fortunate I think. The ONE thing that really stopped me from having J pouch surgery (I might get beat up by some J pouchers here, lol) is that in order to create the J pouch, the surgeon has to use a fair amount of your small intestine to create the pouch, which is all well and good...unless it doesn't work out and you have to get another ostomy. Now you're in a situation where you had some semblance of "normal" again...only to have it taken away...again, that and the fact that if you had to get another ostomy, you would have that much less intestine to absorb water and nutrients, something I have seen expressed by Crohn's sufferers due to the fact that they sometimes need multiple surgeries as the disease attacks more and more of their digestive tract. I'm not trying to talk you out of anything, just giving my own take on a similar situation...whichever you choose, I wish the best...and GOOD luck/have a GREAT Wedding.
Hi Cherylem ~ Once a week, I teach a course that runs all day Saturday, and I need to be in the room from 10 am until 5 pm, so there is no time for me to deal with output.
After some experimentation on days when I did not have to teach, I discovered I have no output after 9 am if I eat nothing after 6 pm on the previous day — I do not find it difficult to fast for 24 hours, and some people even feel periodic fasting is good for your health.
I drink about 2 liters of water on the day I teach as I've found that water energizes me.
Perhaps you can do your own experiments before the wedding to see how your body reacts to fasting.
On another note, I also have an ileostomy for the past 4 years. Like you, I was in Intensive Care for 6 1/2 weeks - then a rehabilitation center for another 2 1/2 weeks learning how to walk, eat, gain weight again after all the trauma from the surgeries.
I had lost a total of 35 lbs. which took me 3 years to gain it back. I also can have mine reversed, but have chosen not to for many reasons - the main reasons are that I just can't face any more life-threatening and painful surgeries and recovery - and also because I do not want to live with diarrhea 24/7 when reconnected. Some people have good luck with reversals, but most of the research I have done has come up with some people being reversed, to only have the ileostomy put back in place because they couldn't deal with being on the toilet 24/7 and their lives were now limited to the bathroom. I am almost 62 and have an active lifestyle where nothing (even my ileostomy) stops me from doing/eating everything I want. I'm lucky I guess. It was only a few weeks ago that I finally accepted my ileostomy and no longer feel "different" from anyone else because I'm not different at all...we all (even so-called "normal" people) have some sort of malady or baggage that is carried around through life. Our ileostomies are our badges of courage that only shows that we are special because we survived when the odds were against us! So, even though I'm single right now, if I find the right person to become intimate with, they are just going to have to accept me for who I am - and all of me! But, this has taken me 4 years to come to grips with the ostomy. My son has Autism...now, that really is hard to live with. So, I have nothing to complain about. No matter what you decide about reversal, you can be sure that we are all here to cheer you on 24/7. Take good care and congratulations on your upcoming wedding.
Cherylem,
I have had my ileostomy for 11 years. I have had one doctor say I can get it reversed, another says no, and a third that says I can get it reversed but bowel movements and regularity could be very messed up, so I will keep the ileostomy. I am 45 years old, so hopefully I will live another 20 or 30 years. One thing I can tell you is the first 18 months were the worst. It takes a while for your body to fully adjust to the ileostomy, but after that things got easier. Bags stayed on a little longer (now 3-5 days instead of 1-3) while output is constant. Certain foods make it thicker, so it fills slower. My advice is to stick it out a little longer. As long as you are relatively healthy, you can always get it reversed. But if you can adjust and live with it, you can lead a relatively normal life.
Thank you all for all the replies. This has helped me out sooooo much and I realized I'm not the only one in this boat alone. I praise you all for all you have gone through and knowing all this, makes me feel that I too am normal even with this ostomy. You all have lifted my spirits and I am so glad I found this site to be able to let my feelings go and have someone here who has gone through the same things. Also, I will check the ostomy site out for garments. I never knew there was a site for people with ostomies to be able to purchase special garments. Thank you all and God bless you.
Learn more about ostomy accessories, and when to use them.
I want to offer a little encouragement to you. I've had my ileostomy now for 8 years in November. I also had complications that kept me in ICU for 96 days and 2 months in rehab learning to walk again. I lost 45 pounds. I have the option to have a reversal; however, I've chosen not to go through any more surgeries. You will learn over time the best ways to extend your bag life. I've got my procedure down so that now I can wear the bag for 7 to 10 days and still protect the condition of the skin. There is a wealth of knowledge to be learned here from fellow ostomates. Go slow and take your time. Living with an ostomy isn't the end of your life; it only provides a little bump in the road of life.
Green-eyed lady has it right:
Quoting her below:
I am almost 62 and have an active lifestyle where nothing (even my ileostomy) stops me from doing/eating everything I want. I'm lucky, I guess. It was only a few weeks ago that I finally accepted my ileostomy and no longer feel "different" from anyone else because I'm not different at all...we all (even so-called "normal" people) have some sort of malady or baggage that is carried around through life. Our ileostomies are our badges of courage that only show that we are special because we survived when the odds were against us! So, even though I'm single right now, if I find the right person to become intimate with, they are just going to have to accept me for who I am - and all of me! But, this has taken me 4 years to come to grips with the ostomy.
All of us that have gone through this surgery are very lucky to get a second chance at life. God, I'm thankful for that every day. I had lost my wife of 37 years 6 months prior to emergency surgery. So, my single-parent daughter and granddaughter needed me. That's was and is my motivation to keep on keeping on. I was 62 when I had my surgery. I'm now 70 and thankful to still be here. You are very fortunate to have found someone that understands your circumstance. Best wishes in your upcoming wedding. Now go live a happy life.
I'm surprised at the answer about fasting--I don't think any doctor would approve of that--besides, I find drinking fills my pouch and makes it balloon. I guess you'll have to use trial and error on that one when you have a day at home.
There is a tape called Hypafix that you can get through your supplier--you might try "picture framing" your appliance with pieces of that to give you a feeling of extra security. Do you know what "picture framing" is? Take that tape and put pieces over the outside of the appliance (that sticks to your skin) so that it overlaps somewhat, so if your appliance should leak, you have a little extra room before it becomes a disaster.
Good luck with your wedding and your life. And know that not all surgeries require such extensive rehab including learning how to walk again! I was only in the hospital for 4 nights when I had my ileostomy done, then went home. And I had to have it reseated because of a hernia, and again, I was only in the hospital for 4 nights, then went home.
🔒 Login to see image
How sad you are sounding, I had mine 11 years ago and a year after that I had adhesions and for some reason they didn't put me back together at that time. I have looked at the whole thing as gosh if it was 30 or 40 years ago I'd probably be dead, so I have adjusted myself to a new way of living. I am careful what I eat and I did learn not to eat after 3pm (that is my big meal of the day) if you eat dinner in the evening you are up emptying your bag so this way I have a snack about 11pm after the news. My earlier meal is gone and this way I can sleep all night without the worry of an accident. That doesn't mean if you roll over on your right side and you backfire during sleep, that has happened to me even just sitting watching TV. You apparently didn't have cancer and so didn't have 7 months of chemo. Surely your Dr can give you a better understanding of what won't go wrong this time putting you together. I wish you happiness in your future plans and you are so lucky to have someone that loves you that much.
I have had my ileostomy for seven years. I went through a lengthy hospitalization and recovery period. I went from 185 pounds to 98 pounds. I started out using a flat skin barrier. After gaining some weight, I experienced failures. I called several companies to get free samples. I now use a convex barrier. I very seldom have any problems with leaks. I eat most everything. I have learned which foods slow down the flow to allow me to do whatever I wish. I change my diet depending on my planned activities for the day. I play a lot of golf even during the hot summer days. I tended to experience failures when I eat a high fiber diet and then wear tighter clothes. This results in thick discharge that packs instead of flowing. I also drink a lot of liquids. I could have my ileostomy reversed but choose not to.
I had cancer when I was 21 years old and had 38 radiation treatments and 2 cobalt treatments. About a year and a half ago, I had IV dye put in me to look for a tumor. That night when I went home, I started cramping and had severe pain and vomiting. I went to the ER and they said I had the flu. This went on for 3 days straight until my daughter came and took me to another hospital near her. They had told her the IV dye started up the radiation in me, which I had many years ago, and inflamed my insides and caused a perforation in my small intestine plus my appendix burst. They put a hose down through my nose and took out 40 canisters of green vile. If she wouldn't have gotten me to the hospital when she did, I would have died. Doctors said this very rarely ever occurs. I am blessed to be alive and be here with my loved ones. Yes, I am sad at times because it's been a struggle, as I am sure like the rest of the people on here, to adjust to this type of illness and not being able to get rid of it. As days go by, I am adjusting better each day. I do count my blessings and know there are people out there in much worse shape. I am very fortunate to have family and a man who loves and accepts me the way I am. I think once I can learn to handle the leakage and all the other good stuff that comes with it, I will be a better person for it. I am now going to concentrate on my wedding and making plans for a whole new life and leaving the old one in the past. Thank you for your comment, much appreciated... cherylem
In reading your posts, it is apparent that you have had a real tough time of it, as many others on here have also had. However, you also have things going for you that others on this site are not as fortunate to have. I don't want to sound like a preacher here, as I am far from that, but the bottom line is you're alive and surrounded by a wonderful family and soon-to-be spouse. Things will improve. You will see. Please remember, an ostomy is not an illness. It is a slight modification that allows us to live our lives in a normal way. You know, I recently met a lady to whom I described my ileostomy. I was expecting all kinds of questions and queries. After a pause, she said, "All it means is you have a rectum in a different place. What's the big deal?" In my mind, she summarized it exactly. So, good luck as you move forward.
X_
I guess you summed it all up very true, a rectum in a different spot. I am getting more positive with this ileostomy lately and have talked with so many people on here who have helped me to see things a lot clearer. I am happy to say, I am moving on and going to live a normal life no matter what. As my better half says, when you have those bad moments, just laugh about it, and know there are people less fortunate out there than you. It seems to be working. Thank you for your comment and yes, I am fortunate to have the family support and a man who supports me through all of this. I don't know what I would do if I didn't have him.
It's not easy adjusting to an ostomy at first. You can't stop thinking of this bag hanging on you 24/7. Your life is totally all about the "bag" and the many ops that come with a new ostomy. And then it gets you when you're sleeping - that makes you feel real sexy if you have a spouse sleeping next to you, not good. Then in public with a full bag and no washroom in sight, yikes! Your mind is screaming, "Help! Get this thing off of me."
But as months and years go by and everything settles down, then one day you realize you don't give it much thought anymore. It doesn't consume your every waking thought. You're back to your life you had before the ostomy, but of course, you still have the pouch. For me, it has changed my life for the best in so many ways.
Don't let having an ostomy change the way you feel about life. You are still that same wonderful person you were before. Be the "bag." Why let it change who you are?
;
The positive - We are still on this earth to share in laughter with our family and friends and have families of our own. How can life get any better?
As my sister likes to call me:
THE BAG LADY LOL LOL LOL
;LOOK OUT SHE'S GOING TO BLOW LOL LOL
I'm a huge fan of "picture framing" around my appliance, but I just use regular 1-inch white medical nbsp;paper tape. nbsp; Like ilsn2u said, not only does it give you a feeling of extra security at times of leaks (which are easy to see and monitor nbsp;through nbsp;the white tape amp; also gives you some extra time to go deal with the leak), but I feel like it also provides a little added nbsp;support when the weight of my bag starts to pull down on me. nbsp; I also wear a thin elastic ostomy belt that keeps things nice and secure there. nbsp; But by and far, the best product that I've bought online so far is called "The Equalizer" which is essentially a piece of PVC tubing that I press around my stoma to nbspbetter seal the barrier ring and flange (before attaching the pouch) nbsp;during bag changes. nbsp; Because it's circular, nbsp;it exerts pressure around the stoma equally at the same time. nbsp; It pretty much solved my leak issue. nbsp; It costs about $30 and although I'm really happy with it, nbsp;my husband teased me mercilessly when it arrived in the mail because it is probably something many DIY nbsp;people could make themselves for much less money. nbsp; My biggest issue these days is pouch ballooning at night. I don't know why it's happening. Is it from something I ate or drank before bed or does it just mean that I am taking in too much air while I sleep? nbsp; Any advice? - KC