Seeking Support for Making My Ileostomy Permanent

I am sorry, this is really just me rambling - I need to get it all out and have no clue how to.

A few weeks ago, I decided I would make my ileostomy permanent. I was really comfortable with this until about 2 days ago. I had a bit of a freak out; I don't feel like I have anyone to really talk about it with - as no one I personally know has a bag or really understands what I am going through.

I was 27 when I had my emergency surgery last October (just starting life really) and now with the next one lined up, I will be 29 shortly after I have the full removal. I am so tired; the last 6 years have been focused on being sick, and now these 2 years where I focus on surgeries. While I watch everyone around me have babies and get married, I am worried about how my skin is doing, medication, and whether or not I will even be able to have kids once I am healed. I always thought I would have one kid before I was 30 - that doesn't look to be the case now.

What freaks me out the most with this is that most of my life, I will only know myself as having a bag - one thing my stoma nurse said really got me thinking. "You are lucky that you have a flat stomach - it makes putting your bag on so much easier and less leaks." Well, that is fine for now, but what about if I get pregnant, gain weight, or when I am older - my body will be so different at that point, will I be able to handle it, will it be harder than it is now? The what-ifs just keep coming up.

I got to choose between a permanent ostomy and a j-pouch - I picked the ostomy because of all the research I read; there is less of a chance of infertility with the ostomy.

Mostly, I think I am stressed because the wafer has been causing me issues on my skin and has been so itchy and annoying. I don't want that for the rest of my life.

I guess the stoma nurse doesn't have an ileostomy bag! I got mine in my late teens. And I was happy as I was then well and glad to be rid of my diseased bowel. It was all removed. My stomach was flat then. Later I had two pregnancies and had no trouble with the bag sticking, or coping with it in any way. Now my stomach is not so flat, I am nearly 60, it sticks fine and I am able to cope just the same as I did in my teens. Yes, I've had leaks but that's been nothing to do with my shape. If you have sore, itchy skin you need to use a barrier wipe/spray or try other products. What ifs come up with everything in life, don't they? Just take one step at a time. I have not known many baggies or maybe I have without realizing it!!

Hi Feather, I've had my ileo for 30 years. I got mine when I was 35, and it was tough at first. There wasn't much information back then, no internet, and the ostomy products weren't the greatest. But the main thing is, I am still here and wouldn't be if I didn't have the surgery. As for the itchiness, are you waiting too long between changes or maybe allergic to the wafer you use? Good luck with your upcoming surgery.

Be glad you are still alive. Itchy bag can be fixed. Call your ostomy supplier for free/new products.

I am sure you will be a great mom someday. First, get comfortable with your ileostomy. Check out The American Ostomy Club for more support and ideas for dealing with ostomy problems. Let us know when you are due!!! All the best!

Hey, thanks for the responses. I do use barrier wipe/spray and have tried many different brands. Also, we have checked to see if I am allergic to the wafer and have tried many different types but am not allergic. I change my bag every 2-3 days. I have contacted my supplier and even have searched online and spoken with doctors. The itching really isn't under the wafer but on the edge where the wafer meets the skin. I have healed my skin on these edges with anti-itch cream. I go see my doctor in the morning, so I hope we can find a new idea on what to do next. I have spoken with one ostomy blogger - she has had the same issue that I am having. I know it can be fixed, just a bit frustrated. I think what is bugging me the most is that I feel like my life is at a standstill for at least the next year and a half - while I heal and get better. I am so happy that I am alive and this is the best I have felt in years. The ostomy has truly given me my life back. I just get a little jealous seeing the people around me have the life I want. I know I will get it one day; I just wish that day was today. Sorry for typos, writing on my phone.

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Hey, you have a life. It's just a little different than everyone else. You are part of a special club now. We need to come up with a secret handshake for our secret club :)

Hello, Feather. I can hear you all the way to my computer. I was there. We all are there, whether we admit it or not. I was fortunate to have already had my children, but I have many friends that had great pregnancies with their ostomies. If you could, it would be great for you to attend the UOAA conference in St. Louis, the first week in September. There will be lots of us there! :) And we can surely figure out a secret handshake like Kruzer suggested! :) I still find it bizarre that I poop out of my belly, after all these years. You will be fine. Also, have you looked up the local UOAA support group? Way helpful!

"You cannot swim for new horizons until you have the courage to lose sight of the shore." ~ William Faulkner

Another thought for you :)

Sadly, there is not a UOAA support group near me. In fact, I think there is only one support group that is even in my town, and as for the conference, maybe next year. I really need to save up my leave for my surgery in December. I repeat to myself all the time that I have life, but does that life really matter if you aren't happy with the event that you want (baby, wedding, etc.)? I have always had some kind of control in my life until this point - even with my Rx, I found a way to control it. This just feels like I am in a tailspin and can't catch the wind. I am sorry if I sound self-pitying - this isn't normally who I am. I just need to vent, and this is the one place I feel like I can.

If you can't travel, check out a website that I found that has a lot of good support and helpful suggestions post-surgery. I know it will be stressful up to the surgery point, but you will be relieved afterwards. Check out www.theamericanostomyclub.com. A lot of good info on ostomy problems and how to handle it. Good luck. Check back in with us.

What kind of supplies do you use? I used to use the Hollister brand that had the tape border. Found that I was allergic to it, I guess. They make ones without the tape border. That stopped the itchiness for me. I go a week between bag changes. Also use Hollister Adapt barrier rings. I rarely have leaks. Just a suggestion. I understand what you're going through. The struggle to decide to make it permanent and seeing everyone around you having babies and what not. I had my surgery three years ago when I was 27. So my husband and I had to put our family goals on hold while I got better. Then once I had the surgery and was healed, we started trying to have a baby. A year later, found out my husband can't have kids. Very devastating. So we've been trying rounds of IUI (fancy name for artificial insemination) with donor sperm. 5 rounds, no pregnancy. Was really hoping it would work because these only cost about $1300 per round. One round of IVF is $18,000. And to top it off, I've been putting off my Barbie butt surgery while trying to get pregnant. BC my surgeon said infertility increases after you have that surgery. I know I need to have that done as soon as possible. All my friends and family seem to be popping out babies left and right. Feels so unfair sometimes. I also go back and forth with whether or not to make my ostomy permanent or try the J pouch. The only nice thing about the ostomy is not having to run to the bathroom anymore. I worry that the J pouch will feel like having Ulcerative colitis again. That scares me. Sorry for rambling. Just know you are not alone. There are young people with ostomies going through some of the same challenges as you. Hang in there. That's all you can really do.

I skipped the J-pouch for the same reason you state. I don't want to run for the bathroom again ever.

Featherfeet: I also had the itching/skin problem. Try a very light coating of Cortizone directly on the adhesive. Just a tiny dab is all that's needed. If you spread it lightly enough, the adhesive will still stick to your skin. I've been doing this for over five years. If necessary, supplement with a little medical tape (sensitive skin) and/or a belt, if lack of adhesion becomes a problem. I hope this helps. As bad as it seems now, keep thinking that you will be healthy and strong very soon. When I was sick, I just wanted to die, and I came very close to it. I haven't had a thought like that since my emergency surgery. Hang in there, ok?

I think most women have similar thoughts about having children after a permanent ileostomy. I was 21 with chronic ulcerative colitis, single, and asked the same question. My ileostomy is now aged 53, we have just celebrated our 50th anniversary, have 2 children, and 3 grandchildren. Not too many problems along the way. The range of products available today makes life easier too. I wish you well.

You know what I love seeing here? No one ever gave up! We all found a way around the problems and complications. You are stronger than you think! You find this out about yourself in times of dire need. We should all be proud of ourselves and continue to show others.

Hi Featherfeet. Over 40 years ago, I originally had a temporary ostomy when I was 21 and newly married. Pretty scary. All was going well for 3 years when my Crohn's flared up to the point all of my large colon had to come out. So it was made permanent. I remember having itchy skin at the beginning. I used calamine lotion and let it dry before I put my pouch on. Over the years, I have gained some weight and my tummy is no longer as flat. But it hasn't hindered my ostomy. I have not regretted making the decision to do it because I was so sick that I almost died. Best of luck to you. Let us know what you decide.

Kruzer - I agree with you, even on my worst day, I still don't give up. It is nice to see so many of you have had children with not so many issues. Texaschic109 - I wish you luck in this part of your life. This is one of my reasons for not going J-pouch as well, when the surgeon said you could be going to the bathroom anywhere from 5-12 times a day, I responded with "So, I would go back to the way my life was before my ostomy? Hmmm, no thank you." - I had met with 2 surgeons to talk about all my options, both were very surprised that I was okay with keeping my ostomy at such a young age. It seems so many worry about the way they look with it, which I understand fully. But like most have said, I am just lucky to be alive, I almost died in surgery (Found that out recently). Redondo - I am about to try the calamine, what I have read is that since it dries fully, it helps the wafer attach fully. I use Coloplast Convex with the Hollister Adapt barrier rings - The convex stopped all of my leaks I was having, which I love, and the extra barrier ring makes me feel comfortable.

My surgeon told me that a J-pouch is subject to complications, and a permanent ileostomy is the way to go for someone who wants to go for the gusto and basically be able to do anything. I got mine over 6 years ago and have never regretted it. It doesn't limit me in any way. I have found that the itchy skin problem comes and goes. In addition to the other suggestions, especially trying other products to see if there is one without allergic reactions, a very helpful thing is to give your skin exposure to air (recommended by my surgeon). When you change the pouch, give the skin 20-30 minutes of being uncovered (if your stoma doesn't cooperate, you can catch the output in some toilet paper). It really helps.

I too have heard of people who opted for the J-pouch and it was not good. Also, once you do that, you are using up good bowel or intestine, making things more difficult overall. I think that leaving the stoma and skin exposed for half an hour or so is also a good idea, and using calamine lotion at the same time. In order to stop the flow, you can try eating some marshmallows beforehand. It does work, but I wouldn't want to do this on a regular basis. Sometimes it's easier to also try doing this first thing in the morning before eating breakfast so there is less output.

Hi all, I heard the same thing about the J-Pouch which was why I chose the ileostomy. I could not face another major surgery, so here I am. I too let my skin breathe for about 1/2 hour when I change my wafer every 3-4 days. My stoma, named Stanley, is simply unpredictable. I can change the wafer morning, noon or night and sometimes Stanley percolates and other times very quiet. I crust with stoma powder and skin barrier for extra protection. A wound care nurse suggested it when I was a newbie. Best of luck to you Featherfeet. Take care - LadyHope

I do normally let it air out for about 30 minutes when I change - mostly it is just nice not to have it on for a short time. However, I tried calamine this morning. This is the first time in a long time, I am not itchy. It is crazy this morning it is almost like nothing is there. I even went to the bathroom to check and make sure it was still on lol. Thank you all for your suggestions.

Woohoo! Great to hear.

I am so happy for you that it worked. :) Thanks for the feedback.

Also, the calamine didn't burn when applying, which I was really scared of. My skin has been so raw even touching it hurts and after wafer is on it stings for a while. This morning was perfect.

Wow, isn't that the definition of a community - people offering helpful solutions and now you seem to have one that is helping. That is wonderful. It's clear to me from the comments that people are very pleased with their permanent ileostomies and don't have regrets. I think you should be comfortable with that solution - doctors have really perfected how to do them, complications are minimized, and the products keep getting more advanced. It's interesting that we all hear negative things about j-pouch, but they are all hearsay. You might consider asking your surgeon to give you names of people with j-pouch that you could talk with to get their firsthand opinions.

I know a family that has many J-pouches in it. Six have it and love it (mostly men) - one had a bunch of complications and had to go back to the ostomy. Only one is of age to have children and she is having major issues getting pregnant. I also follow many blogs and have read a lot of firsthand accounts on J-pouches. I think in the end, everyone picks which surgery is best for their lifestyle and what they are willing to put on the line. J-pouch for me is at least two more surgeries and if it doesn't take - another just to go back where I started.

The major problem that I see with JPouch is that if it doesn't work, you cannot just go back to where you started because some of the bowel or colon would have been used up. A friend of mine did this and now has only 10 feet of bowel left, which isn't very much. Then what? Plus, if you have a chronic disease such as Crohn's, I was advised by my surgeon never to consider this because it could travel through the rest of the colon. So, beware and be very careful. My opinion is if ileostomy has a much better chance of success and there are major concerns and unknowns of JPouch, I would go for the sure thing.

Hi Featherfeet, I read your post, and my heart went out to you, so I had to answer. And then I found that others had as well. All the above is good advice. My name is Marsha, and I have had my ostomy for 50 years. I'm 66. After being out of school for 3 years (due to Ulcerative Colitis), I was thrilled to find that there was an end to my suffering. I had no trouble accepting my ileostomy, and also managed to find many other young adults in the NYC/NJ area, so we had really important discussions on dating, intimacy, management...and even childbirth. I still had my rectum for 4 years after the ileostomy, but it wouldn't heal. I kept fighting with my parents and doctors to do the final surgery. I wanted the disease out of me. They finally agreed and had it removed when I was 19. I did have some damage... nerves to the bladder were cut, and so I don't have sensation, but I do urinate normally. I was concerned that there would be sexual damage... (I was not sexually active before surgery) but if there was, I'm not aware of it. It did take the rectal incision a long time to heal, but I was fine a year later when I married. As for children... I always wanted them, but never thought I'd ever be well enough during my sick years. Remember, this was back in the 1970s and young people really didn't have this surgery back then. But I spoke to a few women who had gotten pregnant after surgery (one had 4 children!) and that gave me the confidence to go ahead with pregnancy plans. I was never really thin, and my tummy was somewhat flabby anyway, but I never had any difficulty with my appliance... until I lost sight of my stoma in my 9th month. My then-husband (who also had an ileostomy) was reluctant to help me, so he fashioned a mirror that hung from the toilet, so I could see my stoma (in reverse) for the last few weeks of my pregnancy. I can't say I had an easy time... both of my babies were large (8 1/2 pounds) and although I had painless labor, I couldn't push that first kid out. I wasn't a candidate for a C-section, since my belly was so cut up with 3 different surgeries, and a very weak area where I had had a hernia 2x. So they used forceps and pulled that baby out of me. I think he was holding onto my throat. It was rocky for both of us for a time (infections etc.), but all turned out well. So well, in fact, that two years later, I did it again, only to have an even bigger baby. This one was wrapped around my spinal cord, I think... My babies just didn't want to come out. But thanks to my wonderful doctors... my little Jay became my second miracle child. Everyone has a different experience, but I have to say my pregnancies were uneventful and very easy. Deliveries... not so much. It was a miracle that I was alive and well enough to have children, and my two boys are miracles too. I have never regretted making my ostomy permanent. The thought of ever having to go back to living with Ulcerative Colitis was worse than anything else I've had to live through. So make the decision you feel will work for you! (Everyone I know with a J pouch has had problems and more surgical procedures) And then go for it. Life feels better with the disease gone. Best of luck to you. Marsha

Hi Featherfeet. Rosiesmom again, I responded to your question about your mom's surgery. You have encountered a group of people with a wealth of knowledge and helpful advice. They are the salt of the earth and understand your concerns as they have all walked in your shoes. This journey is full of highs and lows, good and bad times. It all comes down to how you choose to deal with those times. You sound like a very grounded person and I am positive you will take it all in stride. The truth is, what choice does any of us have? You can sink or paddle like hell to stay afloat. Hang in there, the best is yet to come.

Hi FF, I saw that you are having skin irritation where the wafer meets the skin. I found that the same irritation happens with me because the wafer is starting to lift around the edges. I don't know why it occurs but what I do to lessen the itch is to wipe the edges of the wafer with clear warm water. It helps. I am beginning to think that the redness is a reaction to the lifting wafer, skin barrier over wipe, and bag rubbing against my skin. Weird thing, sometimes it happens and sometimes it does not. Type of weather makes no difference either - it can be dry and hot or cold and damp or some other combination. Thank you for the Calamine lotion suggestion. I am going to try it:) Take care. LH