I am new here and only have had my "Stella" for 4 weeks. My doc is talking about reversal at 3 months. I had a total colectomy with ileostomy for UC and ischemic colitis. I have a very liquid output right now and am wondering a couple of things. When will my output thicken? Is anyone on meds for thickening? Thoughts on the reversal - should I wait longer? Will it improve my quality of life? Not thrilled with Stella, but she's a whole lot better than living in a room full of hanging rolls of paper.... and the pain is finally gone....
I know this topic has probably been discussed to death, but since it is a life-changer, maybe some of you want to share.
cassiemarie
Apr 26, 2013 8:40 pm
Jamie251
Apr 26, 2013 9:39 pm
Hi Cassiemarie. I am fairly new as well, about 6 weeks post-op. I have not been able to set a date for my reversal yet because my doctor is wanting me to gain some weight (this has proven difficult)! I too, had very watery output, and a lot of it. My doc put me on Lomotil which slows things down. Started out 4x a day, which didn't help. Now take 6 a day. Still have watery output sometimes, but not anything like before. A lot of it depends on your diet as well....bread (white), applesauce, rice, peanut butter (smooth) are some of the things I have read that thicken stool. Things I have noticed that make me watery: Ensure (but I have to drink them), fruit juices, and high sugar foods! Try keeping track of what you eat and how it affects your output! Hope this helps! Also, as for reversal...my doctor said he would not do it any sooner than eight weeks post-op (not gonna happen as I have lost more weight), but when the time is right, he thinks I am ready, and I FEEL ready, I am gonna go for it! Remember, you know your body better than anyone....if you don't feel ready, wait! Good luck!!
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Angelica- As usual, you've written another interesting post. February 5th, 2019, was my reversal surgery after having an ileo for 6 months. I'm one of those fortunate success stories. Of course, things are different now, and I still have to be careful about what and how much I eat, as I don't have a colon. At first, I was afraid to leave the house. My biggest fear was having to use a public bathroom and have the toilet not flush! Even now, when I know that I'll be in someone else's home, I won't eat anything beforehand. I read other people's stories and sometimes feel guilty for having had it so easy, not to mention that I have a significant other who is 100 percent supportive. I've gotten so much out of this website and truly feel for those of you who have it so much worse than I. But I feel it necessary to let folks hear about the success stories.
cassiemarie
Apr 27, 2013 2:11 pm
Thanks Jamie! I have lost 25-30 lbs. since Jan but unfortunately, I could use to lose another 20 at least! I have put 3 pounds back on since the surgery, as my appetite is finally back. As a matter of fact at my post-op the doc's comment was "I hope you don't get fat again before the next surgery!" I know he was kidding with me, still... It's been a long time since I have been in the 140's so I was happy about the weight loss. Sorry you are having such a hard time with it though. If there is anything positive about all this for me has been lack of pain and weight loss. We have to find something positive to say about what we've gone through, although I don't recommend the colitis diet to anyone! Just curious-have you named your stoma? I know there are mixed feelings about this, but I am a 'namer'. Even the bullfrog in my fish pond is Buford! My colon was 'Chester the molester' and I just told people before my surgery that Chester 'was going down!" I also just yelled 'Chester' when I had to run to the bathroom real fast! Lol. My stoma, Stella, (the mouth that never closes) has saved me in so many ways, but still she loves to misbehave at all the wrong times. Grr....
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Jamie251
Apr 27, 2013 10:51 pm
Cassiemarie, lol! I will name it when the right name comes to me...so far haven't found a "perfect fit"! Mine too seems to be pretty active...took me 45 minutes to change my appliance one time because it just kept flowing....shit happens! Lol! Best of luck to you and let me know how your reversal goes!!!
Trish513
May 03, 2013 12:38 am
Hi Cassiemarie
My name is Trish and I have had my ileostomy for 13 years now, and thank God the quality of my life has changed dramatically. My stools are pretty watery too and I go about 8 times a day but it's still much better than the pain and inconvenience I had before. I also named my stoma Stella and thought it was pretty funny when I read that you named her the same thing.
I drink Imodium about twice a day, once after breakfast and once after dinner.
I find that starchy foods agree with me the most as far as binding me. Like pasta, rice, bread, etc. I have to watch the raw fruits and veggies, and sugary snacks. I had a blockage one time after eating undercooked cabbage that put me in the hospital for 2 days. It was awful. So you have to be very careful, especially the first 6 months or so. You were saying you may have a reversal, I didn't think that could be done after a total colectomy, that's interesting. My doctors told me once the whole colon is gone, it's gone.
Good luck and let me know how you're feeling.
My name is Trish and I have had my ileostomy for 13 years now, and thank God the quality of my life has changed dramatically. My stools are pretty watery too and I go about 8 times a day but it's still much better than the pain and inconvenience I had before. I also named my stoma Stella and thought it was pretty funny when I read that you named her the same thing.
I drink Imodium about twice a day, once after breakfast and once after dinner.
I find that starchy foods agree with me the most as far as binding me. Like pasta, rice, bread, etc. I have to watch the raw fruits and veggies, and sugary snacks. I had a blockage one time after eating undercooked cabbage that put me in the hospital for 2 days. It was awful. So you have to be very careful, especially the first 6 months or so. You were saying you may have a reversal, I didn't think that could be done after a total colectomy, that's interesting. My doctors told me once the whole colon is gone, it's gone.
Good luck and let me know how you're feeling.
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cassiemarie
May 03, 2013 1:54 pm
Hi Trish
Actually, it was a 'sub-total colectomy' - they left a stump long enough to reattach.
It is really funny about the Stellas - it had seemed like a good name to me. My daughter knows I name everything, and when I described what the doc would do, and my getting a stoma, the first thing she asked was if I was gonna name her Stella! So it was decided!
I have bad eating habits - I only eat once a day since my teens. I am trying to improve and do notice a thickening when eating more often. I do the starches, too. My doc has recommended taking Metamucil or equivalent to thicken. Does anyone else do that? He also mentioned the Imodium....any long-term effects from that?
Actually, it was a 'sub-total colectomy' - they left a stump long enough to reattach.
It is really funny about the Stellas - it had seemed like a good name to me. My daughter knows I name everything, and when I described what the doc would do, and my getting a stoma, the first thing she asked was if I was gonna name her Stella! So it was decided!
I have bad eating habits - I only eat once a day since my teens. I am trying to improve and do notice a thickening when eating more often. I do the starches, too. My doc has recommended taking Metamucil or equivalent to thicken. Does anyone else do that? He also mentioned the Imodium....any long-term effects from that?
StarUK
May 03, 2013 7:35 pm
Another good thing to thicken your output is marshmallows and in England they have jelly babies (candies) sweets but I think anything gelatine-based is okay. You have had some good advice, make a note of what you can tolerate and what you can't, starchy foods like mashed potatoes, white bread, and pasta. And I take Imodium when I need it too, no ill effects.
vikinga
May 07, 2013 5:01 pm
Hi,
I had my entire large colon (minus 6 inches rectal) removed in an emergency operation last year when my poor large intestine perforated. Because my first ileostomy got blocked by scar tissue and then perforated, I had a second one done (emergency again!) that ended up located between where my belly button used to be and pubes. I also lost 32 lbs in the process and spent 6 months in the hospital. Because I had had 2 perforations, major infections that affected my heart, and gotten so weak the surgeon did not even want to discuss a reversal until I gained my weight back and got healthy. He said a year. I am coming up on that date May 28th. When I first got out of the second surgery, and was learning to walk again for the THIRD time (!!!!), I was so afraid to eat almost anything because of what I had been through and all the literature I had read warning me about "dangerous" food items. The list was endless. The nutritionist was no help really. She didn't really get it. And when that I FINALLY got out of the hospital I couldn't even look at another Ensure or Boost!!!! I barely choked down a few while in there.
My advice to you about food is this. EAT!!!!! HEALTHY!! Yes, there are a few I still avoid to be safe, like popcorn and grape skins, but for the most part I chew the heck out of everything. I peel the long fibers from celery and chop it, but I eat it. I make fruit smoothies for health. Forget the white bread and simple starches....I eat whole grain. You learn to listen to your body. Yes, I empty my bag frequently, but I am still here!!...and this stoma works great!!
You will also learn that there are periods when your stoma is less active and when you have the luxury....change then as needed. I take advantage and clean up in the shower.
I am very interested to hear about the reversals and how they go. I hope to have one too. I am a bit nervous after all that happened, but hopeful. All the best!
Lisbett
I had my entire large colon (minus 6 inches rectal) removed in an emergency operation last year when my poor large intestine perforated. Because my first ileostomy got blocked by scar tissue and then perforated, I had a second one done (emergency again!) that ended up located between where my belly button used to be and pubes. I also lost 32 lbs in the process and spent 6 months in the hospital. Because I had had 2 perforations, major infections that affected my heart, and gotten so weak the surgeon did not even want to discuss a reversal until I gained my weight back and got healthy. He said a year. I am coming up on that date May 28th. When I first got out of the second surgery, and was learning to walk again for the THIRD time (!!!!), I was so afraid to eat almost anything because of what I had been through and all the literature I had read warning me about "dangerous" food items. The list was endless. The nutritionist was no help really. She didn't really get it. And when that I FINALLY got out of the hospital I couldn't even look at another Ensure or Boost!!!! I barely choked down a few while in there.
My advice to you about food is this. EAT!!!!! HEALTHY!! Yes, there are a few I still avoid to be safe, like popcorn and grape skins, but for the most part I chew the heck out of everything. I peel the long fibers from celery and chop it, but I eat it. I make fruit smoothies for health. Forget the white bread and simple starches....I eat whole grain. You learn to listen to your body. Yes, I empty my bag frequently, but I am still here!!...and this stoma works great!!
You will also learn that there are periods when your stoma is less active and when you have the luxury....change then as needed. I take advantage and clean up in the shower.
I am very interested to hear about the reversals and how they go. I hope to have one too. I am a bit nervous after all that happened, but hopeful. All the best!
Lisbett
StarUK
May 07, 2013 5:12 pm
Wow Vikinga, you really have been through the mill! I have had 7 surgeries since my emergency one in 2007. I am sure my surgeon has Valium for breakfast before I arrive because he doesn't know what stunt I will have pulled now. My first reversal went really well, better than I thought. I hope yours will too. I will be going back for my reversal when they fix the other bits and bobs, but I am staying focused and I will get there in the end.
Star
vikinga
May 14, 2013 1:46 am
You go, Star!!! I absolutely love the incredible community, support, and wealth of first-hand lived knowledge we can share on this website. It is vital. Much more important than the dating aspect. It really doesn't matter who you date. It matters who you are going into anything. And confidence comes with the kind of support we get here!
Good luck to us all! We have incredible life energy just still being here!!
Big hug!!
Vikinga
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