Surgery question

Hi Chrissy,

Not sure how old you are but let me tell you how my life has changed since my surgery as a result of having crohns for 20 years (first one was an emergency with a loop ileostomy, second was 7 weeks ago to remove my large intestine and rectum).

Now that my ileo is permanent, Lily is perfectly round and small (between 1 inch and 13/16). I can now eat anything I want and I mean anything. I have been going slow with the raw veggies since my last surgery but other than that anything goes.

My quality of life has changed dramatically. As I have said before, it makes me sad to think back on how much I missed out on because of crohns. I missed my high school reunion, friend's weddings, parties, baby showers, trips, food and oh my god, I love to eat.......but most of all, I am heartbroken that I didn't enjoy my daughter's first few years as much as I should have because I was so sick. I couldn't take her swimming or to dance class, my husband did all of those activities. She's almost 14 now and I am busy trying to catch up on everything I couldn't do with her!

Since my first surgery two years ago, I have been to Paris, Frankfurt, Punta Cana, Florida, British Columbia, New York city, Maine and tons of camping trips with my family. I am able to attend any event I like (and even wear a hot, black dress!!!!), eat whatever food is served. I have a position in senior government and am able to travel for work, give presentations and attend business lunches and dinners without a second thought.

I walk, do yoga, swim, bike, skate, downhill ski, hike, zip line, scuba dive, whatever else my daughter decides she wants us to do. My husband and I have a better "relationship" than we have in the 20 years we have been married because I am not sore, sick or afraid of having to go to the bathroom when it's most inconvenient.......

Life with my ostomy, the care itself, takes me about five minutes every five days. It consists of me taking off my appliance, hopping on the shower, drying off and putting the new one on. I empty about 4-5 times thru the day (I drink a lot of tea and water so I have to pee ALOT......my nickname is TB = tiny bladder) so I take the opportunity to empty my pouch whenever I am in the bathroom. I also wear form fitting dresses and pants so I like to keep it empty.

I have not changed my bathing suits, work clothes, casual clothes. The only thing that is different is I wear higher waisted panties because I like to keep the pouch snug against my body. You will find everyone differs in how they wear their clothes. I have worn spanx and other tight fitting undergarments with no issues.

I haven't had a leak or issue in well over a year. When your stoma gets to be its final size, wear time should increase and you shouldn't have any problems if you have the correct appliance....which is all hit and miss until you find one that works.

I am not shy or private about my ostomy. I will talk about it and show whoever wants to know about it. This surgery not only saved my life, it gave me back my life and I couldn't be happier.

I was terrified in the beginning as well. I think what helped me the most was realizing how much better I felt IMMEDIATELY following surgery. Now, after seven weeks, I am starting to feel on top of the world again. I am so happy to have that diseased organ out of my body.

Good luck with your research. I didn't have the opportunity for a Jpouch because of the crohns but I am sure people will chime in and tell you all about their experiences.

Best of luck.

Kelly

Hi Chrissy... I also have a permanent end ileostomy, and feel pretty much the same way about mine as Larasmom feels about hers. Life with the ileo is not bad at all, and is WAY better than life with UC was!

I didn't have UC for a long time, but my case got VERY bad pretty quickly and surgery was put out there for consideration about 8 months after my diagnosis. I know that might sound crazy and extreme, but I was a very sick girl....I'd say the UC was killing me. I was more than happy to go ahead with surgery, and actually never even considered a J Pouch. I didn't want 3 surgeries, I didn't want to drag it out and risk more complications, I just wanted to get better and back to being me as quickly as possible! So, at 34 years old, I chose to get a permanent ileostomy and live with "the bag" forever. I have not for one second questioned that choice!

Just like Larasmom, I eat whatever I want, I go wherever I want, wear the same clothes, do the same activities, etc... I am a pretty active gal, and haven't been held back at all by my ostomy. The only thing I am careful about is not lifting anything very heavy, because I don't want to risk a hernia.

Yes, I have to empty the bag a few times a day, but it's always when I am peeing anyway. Sometimes I have to get up once at night to empty, but no big deal. I change my wafer about once a week, and it only adds about 10 minutes to my normal routine. There is a learning curve and adjustment period, of course. Learning what products are best for you, how to change the set up and keep your skin happy. And yes, I have had some leaks,but it's just something you deal with, figure out why it happened and how to help prevent it, and move on.

Everyone has different experiences and opinions, but mine has been very positive so far.

Chrissy, I no longer take any medication either!

K

I was able to stop taking my medications once I had the surgery. It took some time to taper off the prednisone, a little over a month I think.

NCOT mentioned have digestion issues and diet limitations. Like I said, the whole experience is different for everyone....but I really DO eat anything I want with no problems. I don't usually drink with my meals, I try to remember to chew well but I don't always do so. The only things I am careful are thick skins on produce and some seeds. I will peel apples, peppers, cucumbers, squash IF I am going to eat them raw....and take big seeds out of raw cucumbers. But, considering some of the stuff I get away with eating on a daily basis, those things would probably not cause me troubles either.

No one "Wants a bag" but everyone that really needed one will tell you they are much better off post surgery than what they were suffering pre-surgery. It really is no "Big deal" and in fact even has some advantages. I have had mine for 14 years and yes there is a short learning curve depending on your life style. Attitude is the key in my mind so if you have the surgery, own it from day one and move on. You will be able to do more after than you could before. Good luck

I was also diagnosed with Chron's after experiencing severe symptoms. I went through an almost a year of medication but there was no progress. My only choice was to undergone a surgery. At first, it was really hard to decide but I was thinking that if its the only thing that could saved my health, I should have to. I am ostomate for 10 years now. Having a stoma bag is difficult at first, it took about a year for me to adjust. But, later on I learned to live with it and I'm having a great quality life now.

I had UC, then finally went for 2 step j pouch surgery. Life with the temporary ileostomy was wonderful. Felt the best I had in years. Then I had the takedown. Worst mistake of my life. Put up with the miserable j pouch for 24 years, before finally going back to the ileostomy. Whew! What a relief. Finally back to enjoying life again. Life with the bag is not bad at all. Much better than the j pouch I had. Only reason I stuck with the j pouch that long was that they almost killed me with the original j pouch surgery, and was scared to death they would finish me off with the next surgery. Wish I had the internet back when I was considering my original surgery. If I had known then all the potential problems with a j pouch, I never would have even thought about getting one. I know many people get along good with theirs, but dont let anyone kid you how miserable and sick you will be if it doesnt work right. My UC was not as bad as the j pouch was for me.

I didn't read the long responses, but seeing who they were from, I bet they were excellent.
Also important to see NCOT's post because she does have the opposite feeling of a lot of us, and you NEED perspective when making this decision.

I have had my bag for 4.5 months. And I absolutely love it!

I am 28, married, currently not working (but did work for a month after surgery,) have a house and four cats. I also returned to school part time and make money from my crafts and selling on eBay.

I am able to comfortably and happily do and be all these things.
Feel free to check out my YouTube channel (linked as my homepage) or send me an email for anything specific you feel you would have problems with.
Also - Andrina spent 5 days with me living life with a bag - she might be able to give you a neat perspective too since I know you guys talk.

I LOVE my life with a bag - so much so that I didn't even go for J pouch surgery. I was so happy to have my life back that I chose a permanent ileostomy. Right now I am healing from my second surgery (Barbie Butt) but I know I will feel great again soon. 5 days after my colectomy w/ ileostomy surgery I felt the best I had since UC struck. It lasted for weeks until the UC in my remaining parts started to act up again... and now I'm "UC Free" and excited to be healed up from surgery and MOVE ON with my life.

Maybe I'm just lucky or have a different perspective on things, but this generally sums up my bag life:
I eat whatever I want - too much carbonation seems to upset my tummy.
I eat popcorn, raw veggies, nuts... though everything needs to follow the mantra CHEW CHEW CHEW.
I empty my bag 3-4 times per 24 hours. I do it when I pee. I rarely have to empty at night. And lately I haven't even had to get up to "burp" my bag. (Pop the top of the seal to release the excess gas that causes the bag to blow up like a balloon.)
I can sleep on my back, sides, or tummy. Took a month or two to be comfortable doing that. And I luckily always wake up on my back if my bag is full of gas or poo.
I can drink coffee, beer, liquor or wine. I haven't drank alcohol since my second surgery, but I am still a coffee freak some days. Coffee with a bag? Coffee in - coffee out. Looks exactly the same, lol. and DOES increase # of bag changings.
I have not had major dehydration issues at all. I purchased a tub of Gatorade powder and drink 1-2 large glasses with a scoop full of it every day. I also drink a nutrition shake (like boost, ensure, etc) every day. (With an ileostomy you have to be more mindful of your fluid intake, and JUST water wont cut it because too much will clear you out - of important nutrients.
My small intestines have taken well to their new duties. I have not had any issues with Potassium or Sodium - or other nutrients absorbed usually by the large intestines. When I was ill with UC, I had major potassium problems... all gone! Electrolytes levels are good, as long as I drink my Gatorade.

So there's my general response to a number of common Ileostomy Life questions.
PLEASE feel free to contact me Chrissy!

Cheers, embers! :p

It has given me some comfort to know that there are a few UCers who have chosen to stay with an end ileostomy, particularly as this does sometimes seem more like the "On my way to a j-pouch" forum than anything else. Yeah, people love their j-pouches: I get it. But if I wanted to read all about j-pouches, I'd join j-pouch.org

In the meantime, I never even knew you could buy tubs of Gatorade powder. I'm going to look into that, as at the moment I'm paying through the nose for overpriced sports drinks. I do drink plain water, but sometimes it just doesn't cut it, like you said: it doesn't solve the thirst problem.

Had surgery today
came out and started eating what I wanted
I kmow it wasn't a good idea
but ive waited months
wont be doing it again though lol
gas has startef feels strange
what diet should I start with tomorrow
starting with breakfast

Well, not everyone wants a joouch, for me personally no UC at all was best choice, end ileo that I have is next best and jpouch was my least favored option. My quality of life with the ileo aka "bag" is the same as my life pre-Uc- There is essentially nothing that I could do pre -UC that I dont do now with the external pouch, i dont tell anyone but some extremely close friends about it, strangers never know about it, and life is good again. It occupies a couple minutes of my time to manage every four to six days when I change it out, apart from that, jpouch or bag basically involves sometimes emptying out ones pouch (internal or external) when you go pee. After I empty it in the morning, the next time I emoty it is often mid afternoon.