Rookie j-poucher needs help!!

A month is no time - honestly, you need to try to hold on to the contents of your pouch a little while, you can do this when you sit on the toilet - read a book!! Or before sitting on the toilet if there is no real urgency try doing something to occupy your mind so as not to think about it. Your pouch is quite small to start with, and it needs to stretch so that it holds more. Please be patient - I am sure more people will come along and offer more advice

Hey. I've only had mine for 11 days so I cannot comment on what it's like to work fulltime with a J pouch but I will say this:

I really feel for you! I only had UC, and not for very long, before I had my surgeries. If you feel alienated and misunderstood I think it's an absolute shame and you do not deserve it! I am so sorry to hear this!

Aloha, Supersonic. It's very hard to handle disrupted expectation. The good news, if you can adapt to it, is that you haven't lost the race at all, but you kind of miscalculated the finish line. When you write "the fight is supposed to be over," it suggests that you may have been misinformed or overoptimistic. Your recovery is going to take longer than a month (clearly), and the best expectation is "as long as it takes." Some folks here were back in action at four-six weeks, and others took a year to get back to normal. Please try to be patient with yourself, and I hope you can prevail on your co-workers and friends to be patient with you. At least you're not looking at a foot of snow that needs shoveling. Good luck!

Hi and welcome!
You are at a disadvantage since it sounds like you had j pouch surgery because of cancer. So you probably went from a well functioning colon to a j pouch. Where as many here had UC so severe like myself, that the surgery was welcome even though it was tough.

You will find as the coming weeks pass, things will improve. It takes a little bit for your body to adjust to its new plumbing. Are you taking Imodium? That may help slow things down. Watch your diet since it's only been a month. Stay away from sugar right now as it may increase frequency.

I hear you about people thinking it's all okay now. If they only knew! Hang in there....it will get better.

I think it's harder for a cancer patient that has this "sprung" on them rather than UC patient that has long suffered with the disease and is more prepared to take the step of this surgery. You are SO early in this stage & like it's been said before, it takes time. Every month got better for me and as the pouch stretched out, the urgency was less. I was afraid of an accident in the beginning and spent a lot of time in the bathroom but as I got more used to the urges I was able to hold it. (Practice Kegel exercises to strengthen your muscles.) As the pouch got bigger and I was more aware of my "new body", I was more in charge and felt more confident. I also learned that when I felt the urge it didn't mean I had to run to the bathroom and it was just a warning that I would need to go in the near future. The longer I held it, the better it got. It took me about 10 months to feel comfortable enough to take long hikes and know I could do it without trying to figure out where I could go to the bathroom. And hike we did! We went to Colorado and hiked mountains and then on to Glacier National Park in Montana and hiked UP, UP, UP! Be persistent and know you are not alone. You will get your life back and this recovery time will be just a blip in the radar of your life.

Another thing I do to "thicken" the stool is I take a dose of Metamucil with only a few ounces of water after each main meal. Religiously, 3 times a day. If I do this, my stool is consistent and it eliminates loose stool and the urge to be in the bathroom. In the beginning, I used Imodium also, but as I healed was able to illuminate this to only at night so I could sleep through the night and not make several trips to the bathroom. Today, I only use Imodium if I will be in situations that I know I won't be able to use the bathroom. (Example: Long fishing trip on a boat with no bathroom........)

Good luck and hang in there! You are not alone.

A newbie should keep a log of daily diet and number of BMs. You will soon discover which foods to avoid and discuss taking lomotil with your Dr. To reduce BMs.

Why can't you sleep? Sometimes I take Advil or Tylenol pm to battle insomnia. I never have to empty my pouch at night but on very rare occasions, I will have an accident (probably from a "shart").

I am considering looking into Nyquil PM since Advil and Tylenol are bad for us. Or maybe I Wil just take Benadryl since that is the magic ingredient of OCT sleep aids.

Lesandiego, I don't think Tylenol is bad for us. Did you get that information from a reliable source?

I believe Tylenol is a NSAID and reading throughout this board several postings claim Nsaids are bad for j-pouchers.

Tylenol is not an NSAID. It's acetaminophen. It's safe for us to take. As long as you don't have liver issues.

Wonderful! Thanks for clearing up my misunderstanding of pain relievers. Tylenol is not as effective as Advil, but I suppose it's better than nothing

Now that I am colon-less, I have no problem, with NSAIDs. I take whatever works!

supersonic, i totally feel your pain. i did not have cancer, but was on my way there with high grade dysplasia. my UC was well controlled for 15 years so it was a huge shock after my biannual scope when i was told my colon needed to come out. i went from being very healthy and normal and planning my second child to needing these very unexpected surgeries that i had never heard about before. a month is not a lot of time to adjust. you will hopefully get comfortable with your new equipment after a bit more time and come to terms. life is always throwing curve balls at us! for you, being a cancer survivor, i would try to look at these wonderful advancements in medicine as a blessing instead of something messing up the plan you had for your life. this is what i always tell myself when i'm feeling down. if i wouldn't have had these surgeries, i would have gotten cancer. i would have gotten sicker. i am overall healthy enough now and can be a good mom to my kids and basically do all the things i used to be able to do. you have beat cancer...that is awesome and you have won that fight! having a j-pouch is not nearly as scary of a fight. give yourself a few more weeks and things will get easier. once you have your energy back and can get back out and live life, i bet you will feel much better about all this!!

When I was 1 month post-op there was no way that I could have been working, I was still in the bathroom 15-20 times a day and sorting out the pouchitis problems. In fact many times I was wishing I still had my end ostomy and bag.

Now, with the benefit of 2+ year post op - I offer this advice...

Learn how what you eat effects your pouch. Avoid sugar, simple carbs, carbonation, and beer. Focus on foods that slow down your intestines (starches / greasey foods) -

Focus on good health and exercise. Do not eat after 6-7pm.

Understand what pouchitis is, and its symptoms... and how to treat, but most importantly how to AVOID it.

And I will say this, as I have said before, here and on other forums... 1.5 oz of bourbon daily, mixed with water (or straight) has been extremely effective at keeping pouchitis at bay - it has also all but eliminated "butt burn"

Life with a pouch is about learning what works and what doesn't.

Tom in PA

Oh my gosh - another local boy! It's really early on in your process, it's going to take at least a few months to get used to it. For me, Metamucil (twice a day after first and last meal - 1 tbsp in 4 oz water) made a world of difference. I would slowly make changes to your diet and medicine so you know what's actually making a difference. For sleep, it's rough in the beginning - I was waking up almost every hour. Over time, your body will get more used to it. 1 tab Imodium before bed is good for me. I was sleeping better 2 or 3 months or so after take down, but everyone's different. As for work, that's tough too, but you just have to take care of your body first. Good luck - it'll get better with time for sure.