Hi Friends! It's been a while since I've posted, life has picked up and I'm living such a free life with my ileo. A very good friend of mine has opened up an Etsy shop (she is based in Mississauga,...
Hi Rabbit! I'm so glad things are going well with you, and it sounds like you are being taken care of in a great centre :) Keep us updated and best of luck!...
Well it's been a few days now with the new Mio and so far so good. I did call Coloplast and had the rep answer a few questions for me. Yes, they are going to be releasing a convexity line, so that...
Best of luck Rabbit, will be thinking of you :)...
I just did my first change with the new SenSura Mio, and so far I love it! I can't even feel it, and while I could do without the peekaboo window (and when I look at suppliers online they do make the...
Hey NCOT - blueheron has a great blog, ostomyoutdoors.com, and there was one post where she goes into detail explaining her routine for changing, and she actually cuts a small piece of something that...
We do small bowel transplants at my hospital, colons no, but they are not necessary to sustain life....
I live in Ontario, which does cover IVF, but yes, freezing of eggs is often not covered unless private insurance takes that part on (sometimes a portion is covered). I am at that age where family...
Hi Sarah, Yes, actually infertility is a huge issue to consider. I had my jpouch (2 step) done 19 years ago, when I was 15 years old. I found out last year that I am infertile. Many women will have...
Hi Sunny I actually found that the ostomy companies themselves have pretty good websites packed with info on life after ostomy surgery. google: Coloplast, ConvaTec and Hollister for example and find...
@ PoucherInTo - Glad you are feeling better! Knowing what you know now, would you have made a different decision back then - since you had to have rough times at the end and ended up having it taken...
Yes, I drink about 4-4.5 litres a day to keep up with my hydration. I also get kidney stones, and anyone without a colon is at high risk for developing stones, so it's best to drink drink drink....
Hi KeepMovinOn Oh, I can definitely sympathize with your being undecided - this is one of the biggest decisions you will make in your life, and a rather permanent one at that! I had my jpouch for 18...
Ohhhh yes. Anytime I eat a higher sugar food (chocolate bar, ice cream, cookies, cake) my output increases a ton and it becomes very liquidy. And it's always the colour of the food I eat (pink for...
Hi CarenZ Yes, I definitely have had the same feelings and thoughts that you have written about. The bigger the decision, the bigger the worry. You said it in your post "you can't go on like this...
Katie So long as you know that surgery is the right decision for you, screw everyone else. You are the only one who knows what your body goes through, and every person has a different story. For me,...
To explain just how much gas can be created (and explain the ballooning) with CPAP, some of our CPAP patients have GTubes (tubes that go into the stomach if they can't feed orally for one reason or...
Don't lose hope! I had the dreaded ileus with each of my surgeries as well, and it was REALLY bad with my last surgery. I told my surgeon that I think having my jpouch removed for perm ileo was a...
Hiya Rabbit! I was one of those jpouchers that couldn't pass gas unless on the toilet because stool would always come out with it! But, like Pluot mentioned, the gas helped push stool out. I do have...
Absolutely! CPAP and BiPAP machines push air into the oral cavity, some goes into the lungs (as is the intention of the therapy) and some goes into the mouth (nothing you can do about this, it's...
Great, make sure you get him to order you bloodwork that checks your b12, vitamin D, magnesium, HgB, iron and serum levels - I'm sure he knows the drill! Let us know how it goes :)...
Hi Friends I haven't been around much lately, and for a very good reason! At seven months post op for my perm ileo I am doing really well. I am back to work full time, and for the first time in my...
Awww, you are too funny!...
Numbness is something I would talk to my doctor about, especially if this is a new feeling. If could be something nerve related, it could be something much more serious. I can't imagine caffeine...
I don't have any stories to share but I wanted to suggest you go to the jpouch.org website (you will find jpouchers and ostomates here). They have a discussion board set up under "women's health" and...
For the first few months post op, I also had the same itching/burning sensation, and never a leak. My surgeon explained that it was the nerves being stimulated/regenerated. It does dissipate over...
Hi, I had my ileo surgery in October, and definitely have had hours go by where there is no output. Generally if you had a blockage there would be other symptoms as well: pain, nausea, vomiting. Go...
I can understand why you would be so concerned - heavy lifting is definitely something you would want to avoid, your health depends on it. I would book an appointment with your surgeon and discuss...
@ Matt - I use the two piece system and have had zero troubles with it @ Eva Lou - I have tried the two piece flex (that's the adhesive coupling system) and really loved how low profile it is. It was...
Hi Matt I haven't tried them yet as I can't get my hands on a sample until May but from what I've heard from WOCN they are fantastic. I use the regular SenSura line and love it, and I'm going to give...
I'm happy to hear of your jpouch success! That's a great story to share, and hopefully it will motivate others. This being an ostomy forum, there aren't many jpouchers on here, and when I had my...
Yup, I had the tugging and pulling sensations long after my sutures dissolved. There are layers of internal sutures that heal as well (this keeps things from splitting open once the superficial...
Hi, ok so I just heard about another product you could look into, that are apparently great for colostomies. They are a special liner that you put in your ostomy bag, there is an opening that fits...
Hi Eva Yes, your butt wound will be sore, itchy and sting. It will drain gross stuff. It took 6-8 weeks for mine to heal. I wore a pantyliner in my underwear for months, and changed it every couple...
Hi D! OK if you are leaking, definitely call around to ConvaTec, Hollister and Coloplast and explain your issues. They will send you lots of samples until you find what works for you. I personally...
Hi Melissa Iris I think 4+ times is totally normal. I empty my ileo 4-6 times in 24 hours, but it only takes a few minutes. On the rare time when my output is thick (and I understand my output will...
OK, whew, glad to hear it's healed up before putting stuff on it - last thing you need is to gunk it up and infect it. Once mine was healed I bought vitamin E gelcaps - I would poke a hole in it and...
Hi Eva - oh I soooo understand how you are feeling! I came to learn - over the past six months - that patience is key! There were weeks that went by that I didn't even notice improvements, I had to...
Hi, quick question: is your butt sewn up? I had an anal closure and at one point my butt was extremely dry - but I was told to NOT put anything on it. You don't want the sutures to dissolve before...
Oh yes, on my gym days I can definitely feel dehydated after a workout. So, I make sure I'm well hydrated prior to my workout - just by drinking water. Every ten minutes during my workout I sip plain...
Hi Goldy - ok keep in mind the recovery is different for everyone :) They cut me me open again, along the same midline incision of my previous surgeries. I had a stoma made in almost the exact same...
Heya Goldy! I lost my jpouch after having it for 18 years - I have had my perm ileo for 6 months now, I am 34 years old. You know what, after dealing with such a long and unhealthy experience with my...
Hey Eva Lou - I can tell you that I can eat the exact same foods three days in a row and my output timing and consistency can be different each day. It makes sense to me that you would have more...
Ohhh, yes sounds like you are running short on supplies! I would absolutely call your stoma nurse, or call the major companies (Coloplast, ConvaTec and Hollister) and have them send you some...
I second Shaz's response - I don't take any special vitamins, but if I'm dehydrated or short on magnesium or potassium I definitely get calf cramps. A banana absolutely is a good idea, and as well...
I don't wear belt to support my bag, and I also don't wear one around my waistband, but I am a female who tends to keep shirts untucked anyway so I haven't run into any problems other then making...
Hi! Yes I agree, planks are great for core work - there are so many different kinds of planks, a simple google search will yield great results for you :) Also, a stability ball is great - something...
Hi Lucky! Wow - what a story, and yes, reading these boards can be addicting! One stop shopping for support, advice, and friends who have all "been there" :) I'm so happy this has brought you and...
I agree with what the other posters have written - this could very well be pouchitis. I had pouchitis off and on for 15 years, then continually for 3 years, and never had bleeding. I had urgency,...
Great post! How nice that you have found a product that works so well for you - giving you confidence to get out there and live a full life :)...