Tips?

So....I've had my temporary loop ileostomy for almost 4 months now. During the first 3 months I had few problems. I had a couple minor leaks but usually it was because I tried to push the wear time of the wafer to 6 or 7 days. I was feeling pretty confident about leaving the house and socializing, etc. Over the past couple weeks, however, things have changed and I'm really frustrated.

Last week there was one day when I had leaks for no apparent reason and had to change everything 3 times in 24 hours. On Friday I had to change everything 4 times and had my first major leak while out in public. I think think the leaks on Friday were caused by 'pancaking'. Not sure what I ate, but my output was thicker than it has ever been. Now I am completely paranoid to leave the house for any length of time or go anywhere if I can't just come home, if necessary. Not to mention, the skin around my stoma is starting to look a little angry.

Until now I have used the 'less is more' philosophy and usually just clean my skin with water and apply the wafer and use a sure seal over that. It worked well until now. The leaking I have always seems to be in the same spot on the same side of the wafer. My stomach is pretty flat so I'm not sure why it's lifting in that spot.

I feel like the ET nurses I have dealt with are not very helpful. They basically sent me home with a bag attached to my body and said 'go'. They don't seem to provide any information unless you ask and since my surgery was unexpected I was ill prepared and didn't know what I needed to ask. Everything I have learned has been from this forum.

Here are my questions:

1) How do you manage to change your appliance in a public washroom? I was out with friends and told them I was sick and had to go home. I had enough issues trying to change in my own bathroom in the middle of the night when I couldn't lie down on the bed. Poop was spurting everywhere :( At this point I wouldn't even want to try to change in public.

2) What works best for you to thin your stool if it becomes too thick?

3) I use a Convatec convex wafer. Is there something I can use under it to prevent leaks? I was sent some samples of some sort of seal from Coloplast, but I have no idea how to use them.

Thanks for any help you can provide.

3)

1) How do you manage to change your appliance in a public washroom? I was out with friends and told them I was sick and had to go home. I had enough issues trying to change in my own bathroom in the middle of the night when I couldn't lie down on the bed. Poop was spurting everywhere :( At this point I wouldn't even want to try to change in public.

I change standing up and always have. I stand with my stoma over the sink in the bathroom so that any output is easily cleaned up. When I had to change in a public bathroom, it was easier than I thought. I tucked one side plastic disposal bag into the top of my pants, opened it, and then changed over the bag. Very convenient and mess free.


2) What works best for you to thin your stool if it becomes too thick?

I drink lots of water. Also, if I even think I may be pancaking, I use my finger to gently go around the stoma through the pouch, to remove any stool that might be building up there.

3) I use a Convatec convex wafer. Is there something I can use under it to prevent leaks? I was sent some samples of some sort of seal from Coloplast, but I have no idea how to use them.

Have you lost or gained weight recently? That can affect your seal. Or, you could just have a bad batch. Buy some new ones, and contact Convatec and explain the problem. They will likely send you a box to reimburse you for the "bad" ones. If you want to try the seals there are many choices - many like Eakin seals, but Coloplast has similar ones. Or, you can use paste. Just soften and flatten the seal either directly around your stoma, or some find it easier to put it around the opening on the wafer before putting it on. It shouldn't be too think, and should not cross into the opening of the wafer. It is a bit of trial and error.

Good luck!

Thanks for the suggestions. I could try the seal or ring but I don't know how to use them. The wafer does always seem to lift in the same spot. I think I will make an appointment to go back to the nurse and maybe she can show me how to use the seals/rings/paste.

I have some samples of the skiing barrier wipes. Nurse gave them to me but didn't tell me what to do with them. Do they protect your skin if you have leaks? Does the barrier affect how well the wafer adheres?

I do use the hair dryer on the wafer before I apply it and it seems to make it stick better and I try not to do too much after I put it on.

I was reluctant to use the powder because I was going out for several hours yesterday and I was afraid the wafer wouldn't stick. I used a sure seal and everything was OK so hopefully the powder will help. Skin doesn't really hurt, it's just really red directly under the stoma - almost looks like part of the stoma but it's not.

I'm waiting for a date for my reversal and I was doing great but now, with the problems I've been having the past couple weeks, the wait is getting more frustrating. I have a job interview tomorrow. Thought I would be comfortable starting a new job since things seemed to be going pretty good and I was having few issues. Now I'm nervous.

The last time that I had to change that often, I had a bad tube of paste. Otherwise, without the paste, and I use adapt, I would be lost.

Thanks B'Dereh. I find the whole process of looking for a job stressful enough without the other complications. Since I am hoping to have my reversal this fall, I had planned to wait until I recovered and then go back to work. This wasn't a job I went looking for - a former colleague had recommended me to the hiring manager and the hiring manager forwarded the posting to me. So I applied. Had a screening interview with human resources this morning and wasn't sure what to tell them. I wouldn't, however, want to start a job and then have to tell them about the surgery so I was completely honest and told them I would have to have a surgery at some point. To complicate things even further, when I had my surgery in May, I got chatting with one of the nurses and it turns out she is engaged to the hiring manager for this job. Small world. She made a point of telling me she wouldn't discuss me with her fiancé because of privacy issues.....but you never know. Thought I should just be honest.

The frustrating part is I have no idea when the surgery will be scheduled. I was told I would have the ileo for 3 to 6 months. It has been almost 4 months and no word on a surgery date yet. I think it will be at least another 2 months, but who knows? Could even be longer than that. It would be much easier to have the surgery now before starting a job, rather than working for a bit and having to take time off, but it's beyond my control.

I'd also be really nervous about all the things you mentioned. I didn't really worry about leaks too much before because I didn't really get them, but the day after I applied for the job I started having issues and it has really thrown my confidence for a loop. I'd also be worried about being stuck in a situation where I couldn't empty (some days I have to empty almost every hour) or that I would get a leak when I wasn't in a position to do anything about it right away.

Thanks for sharing your experience with me....it makes me feel better because it is exactly how I feel. I guess if the job is meant to be everything will take care of itself. Before I was having to work when I was in a lot of pain and I was able to manage. Maybe this won't be as bad?

It just felt less stressful for me to be honest. And I wouldn't want to burn any bridges in the industry I'm in. The job opportunity is a good one but If I don't get the job, I don't get the job and I will have to find something else later. My husband has been very supportive and, while I'm anxious to get back to work (I'm going a little crazy being at home) I am lucky that it is OK for us financially for me to be at home. I'm thankful for that.

I'm sorry your job is not working out and I hope the next one works out for you. Good luck!!!

I've tried to push for a date. To complicate things further we have been going through fertility treatments (which also makes the whole job thing a bit complicated). The next step is in-vitro fertilization but I don't want to do anything until after the reversal. Given my age, I don't want to put things off any longer than I have to. I indicated this to my surgeon and asked him to try to push for an earlier date. I don't know how much influence he actually has on scheduling OR time though. My surgery isn't considered urgent. I call every couple weeks to ask about a date but they just keep telling me I'm on the list but don't have a date yet. Even if it was months away, if I had some indication as to the date at least I could plan some things in my life. I haven't looked for a job, we've put vacation on hold, we haven't made plans to go home for Christmas etc. because everything is up in the air at this point. I might plan things differently if I knew the surgery would be next month vs. a few months from now vs. a year from now. Its so frustrating not knowing.

Thanks again for your input. What you are saying is true - the thought of things is often worse than reality. Even when I woke up with the ileostomy I was really upset. It wasn't expected and I thought my life was over. For the most part it hasn't been nearly as bad as I imagined it would be. It's unfortunate that we waste so much time worrying about things we don't need to.