Am I Obsessed?

I empty my ileostomy pouch usually a couple of times an hour. I don't want it to get too full and weaken the flange.
I've found it's "very active" between 8-9 am and 4-5 pm. The slowest time is during the night.
I am also on TPN for my short bowel syndrome. I drink a lot and eat often. Is this unusual?
Still only 105 lbs!
Am I emptying too often? It's exhausting being in the bathroom 75% of my day!

Oh, Janice, I don't think you are obsessed, but I know you are tired of dealing with this thing seemingly nonstop. Short bowel syndrome is certainly going to mean you have a higher output. The fact that you mentioned you eat and drink frequently tells me that you do know what to do. Do you wear the small-sized bags? You are so tiny, it may seem to you that the larger bags are too big and cumbersome. But a longer bag can be rolled up in your underpants, yet still allow more room for containment and so it takes longer for the bag to strain against the seal. Also, if your output is highly liquid and you don't let it accumulate because it's harder to empty when it's like that, you might want to try one of those products that you can add to the bag that thickens the effluent (don't you love that word?). How are things holding up otherwise? How are those boys?

Hi Janice. No sweetie pie, you are not obsessed, you just want to be comfortable and you have valid concerns about leaking. I like Herculisa's idea for you about finding a longer bag too. I would suggest the same thing. The fact that you drink and eat often, in my opinion, in your circumstances is because your body knows what it needs and what it wants to stay 'built up' so to speak. We all have a lot to learn from each other, I am so glad to see you posting your concerns and sharing things with us. I just hope I can be more helpful to you in the future...

~Much love from your Wounded Doe

Herculisa, thanks for your input. I think you may have me confused with someone else. I have two grown, married children, a girl and a boy, and two grandchildren, a girl and a boy. The boy just started kindergarten.

My output isn't liquidy all the time. I've learned that eating a lot of starches helps thicken it up. But, what I drink goes right through almost as soon as I'm done drinking or even before.

Doc says I have less than 2 ft. of small bowel left. My body doesn't absorb the nutrients from food, hence the TPN.

He actually says he would like to try another reversal but wouldn't be for a while yet. Still thinking about the bowel transplant in DC.

Thanks Doe! Nice to know people care!

As far as leaking...still having good and bad days. Most times it lasts for 4 or 5 days...then some days, I'll no sooner change it and it will leak.

Learning to live with it all...still hating it but...what choice do I have?

Hi Janice! So the cute little beanies in the photo with you are your grandchildren??? I thought they were your children! You are so lucky to have grandchildren...and grandchildren with beanies lol. Funny thing, I always wanted to have six kids and ended up with none. I was pregnant once but lost the little one when he/she was only the size of a quarter....nothing ever happened again after that. You are blessed, dear.

All of you reading this who have children are gifted greatly. ~Doe

Yes, they are my grandchildren. (I started young). "Gabriel David" is 5 yrs. old and just started kindergarten. "Olivia Faith" turned 1 on July 4th and is such a girly girl. They are the apples of Grandma's eyes!

Rick, I can't reply to your message because I don't have the full membership.

The reason for my short bowel.....had cervical cancer in 2006. Had hysterectomy 6 weeks of chemo radiation. Developed radiation enteritis (radiation damage) to my intestines.

Had bowel obstruction in 10/07 which they operated on. That "repair" came undone after I got home, and was being poisoned by peritonitis. Went to the hospital for this on 12/4/07 and FINALLY was released from the hospital on 2/27/08! It was a long 3 months! It was after the repair surgery that I woke up with my first set of ostomies.

Someone did not record everything, and when I got to the doctor I have now, he did some tests and realized there was 19 1/2 ft. of my small bowel which was unaccounted for!

I had an ostomy reversal in 9/08 and went off of my TPN.

This past May, my bowel perforated again (while I was on vacation in Florida) and I woke up with the 2 ostomies again and a bit more of my small bowel gone.

Because of such a short bowel, my body doesn't absorb nutrients from what I eat. (and I eat ALL the time!) So, I am on TPN (IV nutrition) for 12 hrs. a day.

I'm learning to live with these bags but I hate them just as much as I did the first time around!

Hi, if you have a good fitting flange bag, you should be able to get pretty full without a problem. I have had my ileo for 5 or 6 years now. My doctor told me that after a while, my small intestine would take over somewhat for the colon, and I have found that to be true. I have all my intestine, so I don't have your problem, but with time, it should get better. When I first had my surgery, I was so tiny they gave me the small bag, but it makes you have to go to empty too often, so I agreed with the idea of a larger bag. Also, if it helps any, I am a nurse employed full time. I work 12-hour shifts and have adjusted very well.
Good luck.
Eddie

I hope this comes out the way I want it to... I want to thank all of you. If I didn't read this every day, I would fall into the deep hole of despair. Only with your help do I keep from having a pity party and wonder how I will ever leave the house again. But then I see you all are surviving with so much more severe situations than mine, I am almost ashamed of myself. Thank you.

Hi Janice, I know what you're going through. I have no small bowel left to speak of (never had a doc call it short bowel thingy though). And when I first came out of the hospital, I was emptying the bag up to 30 times a day, and the weight kept falling off me. When I got to 39kgs, I started to worry I was going to fade away. It didn't matter what I ate or drank, within 15 to 20 minutes, it was all gone through to the bag. And because it was doing that, I was starving and thirsty all the goddamn time. I was surviving just to have a bag, didn't see the point. So that's when I went back and demanded they fix me. I made them put me back on the codeine, and what a lifesaver it's been for me. Now, I empty maybe 6 to 10 times a day. Obviously, the less I eat, the less I empty, but I love eating. And now, it's not like water all the time, it's almost normal. And if anyone knows me, I have never been normal, lmao, in more ways than one. So hang in there, Janice. And faith4today, never feel ashamed at feeling a bit low. We all have those days. And yes, it's true that others are doing worse than us, which makes our days look sweet. That is what got me off my butt and started a support group, which didn't last. Damn shame there. I remember thinking, "If this is all there is to my life? Emptying a bag and putting a new one on every damn time it leaked, which was more often than not, then this isn't the life I want." Now, I can't believe how well I am doing. My weight is back to some normalcy, not hungry as much, still get very thirsty as the ileostomy drains my fluids away like crazy. But I am the healthiest I have ever been, maybe not the fittest, but all in all, happy with myself. Guess all I'm trying to say is, it does get better as you go along. Take care, everyone.

Janice,

I do the same thing...every time I go pee I empty the bag regardless of how much is in it. I just don't want to take a chance of the bag puffing out and being "noticed" I guess as I have a very small frame as well (98 lbs). You're normal!!! Everyone else is weird.

Thanks for the support all!! It's appreciated!

Even though my situation is rough, I too know there is someone who has it worse off than me, and that helps!

I have my bad pity party days just like everyone else. But, most days are good, regardless of how often I have to change these stupid bags. I too have felt, what's the point?? I don't want to live just to change bags all the time!

But, like you all said, it does get easier.

I count my blessings and try to stay focused on them. It really helps!

Still praying for a successful reversal this time around.