me again!

Sorry you had such a bad colonoscopy ..... you might find yourself happy to be joining our ranks; I sure was.

Problems are going to be overrepresented on any forum, as a lot of people who are doing fine just go on with their lives (although some stick around), and people with problems ask questions about them.

I don't have the data, but my guess is that skin irritations are very common with new stomas -- the output is very harsh on the skin, and with the stoma changing size and trying to find out which pouching system is best, well it's hard to avoid. But most of these problems are minor and clear up quickly.

It does seem to be common for people to have irritation with a particular product -- adhesive on a pouch, skin prep, etc..... but again, they seem to figure it out and find something that works.

Obstructions are really scary, but I don't think they're that common if you are careful with food at first. But a lot us were pretty terrified of getting an obstruction at first, so there are a lot of "is this an obstruction?" posts.... usually the answer is no.

I think the dehydration issues are also not that common, but they are often related to what people are eating/drinking, and that can take some time to work out.

Others may have more detailed info..... but I think if these are your main concerns, then you might be ready...... The hard part is being OK with having surgery, having a bag, getting your colon out, etc.....

I never experienced dehydration or skin irritation during the 10 months I had my ileo. I've had a couple of obstructions - mainly because I don't chew my food long enough - but they both went away on their own with some grape juice and massaging. I've had a couple of minor obstructions in the 9 months that I've had my j-pouch. They also remedied themselves. Once you get the appliance and wafer worked out you likely won't have any skin irritation if you have any. Skin irritation means that something isn't right like perhaps there's a little leakage. Obstructions will always be possible but that's the case for anyone who has abdominal surgery. There may be issues that you may have to deal with from time to time but nothing like UC which caused me major grief every single day.

I think though, a loop ileo & an end ileo are 2 totally different ballgames, as far as potential problems. I hope, that is! I am mentally ready for it- I've always known that the biologics are just a way to buy some time, & I guess my time is up! When I last met with the surgeon I hope to perform the surgery on me, he said the ileo would stick out about an inch, you want it to protrude a bit so that less waste gets on the skin. The guy I hope to use is a past president of the Amer. Society of Colo-Rectal Surgeons, incredible credentials, etc. so I'm relying on his expertise! I tend to eat fast, so will have to remind myself to chew thoroughly. And this press & seal wrap- do you use it in the shower, just cover the whole package up & that's it? Do any of you use pediatric appliances? I'm pretty tiny, the last WOCN nurse I met with thought they may work for me. I'm so sick & tired of UC, & the daily issues it's caused. It seems like there are SO many types of appliances, no idea which one will be "my" favorite. I'd imagine a 2 piece system is easiest at first, especially with letting gas escape??? I drink a lot of water as it is, so I think as long as I keep it up I should be ok with the hydration factor.

hi eva lou, i understand your predicament, you have thousands of questions but all the answers seem to be different for each individual, i felt the very same before my perm end ileo last year, ?? surgery, ?? pain, ?? recovery, ?? appliances, ?? skin problems, ?? food & blockages, ?? hydration ?? clothes fitting afterwords, etc . the fact you are asking all this means you are in the same frame of mind & mentally in the same place as those of us who have been through it were before the op - i found that as the issues actually arose in real life after the surgery, the answers were found one-by-one & very soon all the previous imponderables were resolved - you will find the same - the wondering & speculating beforehand is a crazy mind bender.

to answer your original questions - (1) i am very active sportswise & i have never felt dehydrated - i drink an extra litre of water if i feel there might be a problem looming - i have many alternative medicine friends & they stress not to drink cold cold water but room temp water - apparently it does not shock the system when arriving in the stomach
(2) i've had no skin problems - i take care when changing the bag so that for the time (ranging 2 - 5 days) between changes i can forget its there - once you find the right bits & get used to the procedure its straightforward enough
(3) foodwise apart from nuts & corn I eat what ever i like with no problems - its a big change from when i had UC - i think the motto on this forum is chew, chew, chew
(4) showerwise - i cant be bothered blowdrying the bag after it get wet so i keep it dry with small sheet of plastic 8 inch square, taped accross at the top with paper medictape & a tab of tape at each side to keep it flat - takes an extra 2 minutes before showering - i actually saw a product for sale on www just like this & they were asking for 45$ !!!!!!

for what its worth the most amazing experience of it all for me was waking up after the op with tubes, pain (bearable), drugs & worth it especially becuase thers was an immediate feeling of no UC & never since having any symptom which resembled a UC feeling - wonderful

I wish you the very best

Eva,

So far no skin issues and it's been 4 years with ileo. I use eakin seal thins under my stomahesive wafer, all care protective barrier wipes and stomahesive powder on the very tiny burn I usually get under the spout of the stoma, but it is always very tiny.

So far no bag accidents.

2 food obstructions but I had eaten a LOT of mashed potato both times. I was told baked is better and fluffier and just small amounts. The blockages I had I walked off with hot tea and grape juice. I am now overly conservative I admit it. But I do the no nuts, no seeds, no peels and quite bland food routine and have been fine. Others eat what they want. It's all in finding your own comfort level and what your stoma and body can handle.

I only got technically dehydrated twice in 4 years. once in a really hot climate while traveling and once from bad tap water in Greece. SEVERE ileostomy diarrhea that time. BUT Immodium bailed me out that time. The other time I had to have 2 IV's. BUT those were only 2 times in 4 years. It's somewhat a challenge, but I have travelled around the entire world then on multiple other long term cruises 3+ months and been fine. So you will do OK one way and the other. I also ballroom dance. My ileo is from an injury not from a disease but it was my life saver.

Rosemary

     Hi EVA!!!  We've been through a lot together over on the UC board.  I am so sorry to hear you are not doing well.  As you probably remember, I went through much as you have......6MP (seven years), Remicade (which failed after 3rd infusion) and Humira (no change after 3 months).  I was the world's worse procrastinator when it came to surgery, but believe me, it was the best decision I ever made.

     To help answer some of your questions...1. Dehydration  A. I became dehydrated about a month and a half after surgery.  I drank a bottle of Gatorade, believe it or not, which did NOT agree with me.  My output was horrendous and I started vomiting.  They took me to the hospital and hydrated me.  This was an isolated incident and never happened before or since.  Of course, I stayed away from Gatorade after that..lol.  Just remember to drink a lot of water.  My body is pretty well adjusted now, so I don't drink as much as I did, but I still try to stay hydrated. 2. Obstructions  A.  Happy to say, I never had an obstruction.  My surgeon did a fantastic job on creating the stoma....he is head of colorectal surgery at Pennsylvania Hospital in Philly and my ostomy nurse said he considered Dr. Fry as the top man in this area.  He told me I could eat anything as long as I chew, chew and chew some more.  Recently, I ate my first corn on the cob.  I had avoided corn like the plague but do love the Jersey corn!  No Problems!!!!  3.  Skin Irritation   A.  I did have some skin irritation around the stoma shortly after I came home from the hospital, but this is common.  I had a terrific ostomy nurse and he told me what to use.  I did develop a UTI but was treated with antibiotic and it cleared right up.  Everyone seems to have some kind of minor blip or two following surgery, but it is no comparison to the suffering endured with UC.

     Do you anticipate having an end ileo or are you going for the j-pouch?  My surgeon would not do a j-pouch on me because of my age, extensive use of prednisone and my very high blood pressure at the time (another gift of prednisone).  He said I was too high of a risk.  When I told him I had no problem with the idea of wearing a bag, but I was sick of being sick...he scheduled the surgery.  After the operation, he told me I had made the correct decision, my rectum was badly diseased....ironically, my colon was not bad at all .

     My surgeon did not sew the anus closed and I still have some issues with that.  When I asked why, he said he leaves it open in case there are any problems post surgery.  I did have a hematoma inside the anus about a month post op and he was able to drain it in the office.  If it were sewn closed, he would have had to open up the stitches.  At least that is what was explained to me.

      Sorry this is so wordy.  Praying for you Eva!!!  Good luck!