Four-month Update (Success Story)

That's great to hear!

Hope it continues for you.

Best of luck.

Lew

I have my takedown bright and early tomorrow. So heartening to read your update the night before. I hope things only get better for you!!

Great to hear from you and read your update. I was wondering why you had not posted. You have been through so much and it is so good to hear how well you are doing! Hoping things continue to do so well!

So glad to hear you are doing well. You def. had a rough start. I am almost at my 1 year mark for takedown and just recently starting feeling good and off all meds except my probiotics . Some recoveries def take longer than others, guess our bodies are on their own time frames. Thanks for the update!

That positive attitude of yours certainly has taken you for the ride of your life. I've been wondering what you've been up to. I'm so happy you've been up to wonderful things. Congratulations on the new bike, the new beau, and the kinky, wild sex! Yay! Way to go!!

kathy

what is your potty schedule like? im still on ensure only and going often 6 months out...

What do you mean by "going often"? Normal for healed j-pouchers is 5-8 times per day.

According to the manufacturer's website, here are the main ingredients of Ensure, in order: Water, Sugar, Corn Maltodextrin, Milk Protein Concentrate, Soy Oil, Soy Protein Isolate, Cocoa Powder (Processed with Alkali), Pea Protein Concentrate, Canola Oil.

Too much sugar (the first ingredient) is known to cause diarrhea even in people with healthy colons. "Milk Protein" probably refers to whey, which is a very fast-digesting protein and will likely cause added bathroom trips. (It does for me, anyway.) Cocoa Powder (a.k.a. chocolate) will definitely stimulate the bowels, causing additional bathroom trips as well. If I were you, I'd re-think the Ensure, as I don't think it's doing you any favors! If you're looking for a nutritional drink/shake with protein, I'd recommend one of the Odwalla protein shakes. You still have to watch out for the sugar, but at least it's from fruit, which is nutritious. In other words, don't live off of these types of drinks/shakes alone - I drink about one a day. More than that may overload your system with too much sugar.

If I were you I'd try foods on the BRAT diet (banana, rice, applesauce, toast/bread). Peanut butter, hard cheeses, potatoes, and pasta are usually good, too. These are all gentle foods that will bulk up and slow down in your digestive tract. Eggs and chicken usually are pretty safe forms of protein, and well-cooked carrots are highly tolerable as a veggie. I would also recommend Metamucil (psyllium husk powder) to bulk things up and absorb some of those digestive fluids that burn so much on the way out.

To answer your question, I go between 5-10 times per day depending on what I've eaten. I can reduce this a bit more if I take bowel-slowers like Imodium or Lomotil. I avoid raw vegetables, nuts/seeds, whole grains, chocolate, and caffeine, which all still cause additional bathroom trips for me. I go most frequently in the evenings, at night, and early morning. Fortunately, the slowest part of the day is during my work hours.

Surprisingly enough, my j-pouch really likes junk food: mac n cheese, burgers and fries (minus the sesame seeds and veggies), grilled cheese sandwiches, etc. and I don't think I'm the only one! I would try expanding your diet a bit and see what happens - just avoid some of those trigger foods.

Let me know if you have any other questions! :-)

I'm glad to hear you are doing so well 4 months out! It gives me more hope! I'm one month out, and just starting to feel somewhat normal again. I'm going about 10 times a day though, and have horrible butt burn (mainly itchiness after I go to the bathroom). Did you have this issue? If so, any suggestions on how to get rid of it? I've tried most over the counter products for diaper rash and hemorrhoids.

Again, I'm glad to hear you are doing so well and enjoying life again!!!

Fantastic news! It seems you are embracing the notion that perfection is not necessary to live a good life. With time, things shold get better, even though there will be bumps in the road. Thanks for sharing.

Jan

Actually, I still experience that issue. I have not found any creams or ointments to have much of an effect on preventing butt burn or itching, though I do use an ointment to help soothe and protect the irritated skin once it's already raw. What I HAVE found to help butt burn is taking Metamucil (psyllium husk powder) once or twice a day. Somehow the psyllium husk tends to soak up the digestive juices that cause the irritation in the first place. It helps a lot with that issue; just make sure not to take it with any other meds, as it can interfere with absorption. Other than that I'm just waiting for that skin to thicken up and become less sensitive as it gets used to the new "system".

Hey boot, have you had any issues with incontinence or leakage? Particularly curious about during sex and during exercise.

Overall would you say your quality of life is better now than it was while you had your ileostomy (post resolution of skin issues, finding good appliance, etc)?

Liz-

No I have not had any issues with leakage at all. The only time I had a tiny bit of a leak was when I had major diarrhea from coming off of a solid month of antibiotics. Other than that, zilch.

Occasionally if I haven't emptied out enough before exercise, the jostling and gravity of jogging will make me feel like I need to go, but I can always hold it as long as I need (though it can get pretty uncomfortable at times).

Sex has not been a problem at all. Everything functions normally. Sometimes I will feel the need to go several minutes after I finish having sex, but never during. (I assume it's because the j-pouch is right next to the vagina and gets jostled a bit during intercourse.)

Some factors that may affect the leakage issue (or lack thereof): I had a top-notch surgeon who left less than 1cm of rectal cuff in tact and used the double-stapling technique, which is much more effective at retaining continence and is the most commonly used anastamosis technique nowadays. I also had UC for seventeen years prior, so I had a lot of practice at differentiating between what is trying to come out... whether it is stool or just gas. I believe that most people who experience leaks think they are in fact passing gas only to end up with a surprise!

Yes, my life is definitely better than it was with an iliostomy. With an ileo, I felt somewhat limited on clothing choices, always had to have supplies with me, constantly had to upkeep the appliances perfectly, stressed about leakage or ulceration around the stoma, and could not exercise because the vigorous movement jostled the bag to the point of becoming a constant irritation and caused more ulceration. Now I don't have to worry about any of that.

The feeling of the need to go more frequently than I'm used to can be annoying, but I can live with that, and I'm guessing it will become less of an issue over time as I get used to the new sensations and as my pouch matures. The most frustrating part of having a j-pouch is waking up once or twice a night to go... but that was an issue when I had an ileo, too. I'm hoping that if I adjust my eating and sleeping schedule enough, and as my pouch matures, eventually that issue will die out as well.

If you have any other questions, feel free to let me know! :-)