Make sure to stay well hydrated. This is best monitored by paying attention to urination - color and quantity.

Good luck!

Talking to a friend or family member. I find even a counsellor helped so I didn't feel so alone. One friend said to me 'Say to yourself, This too will pass.' It helped get through the hard times and it's true after surgery I had 100 times more energy!

Good ideas!!! When you get the surgeries, you are going to be tired most likely, IBD people are more tired naturally and living without a colon can be tolling since a colon: absorbs water, electrolytes, vitamins/minerals. When your colon is gone its important to think positive and surround yourself with positivity. When I am down and depressed, I say out loud the things I am grateful for or I write them down, giving thanks and rejoicing are things that keep one's mental state healthy.

When working out: take it easy! Literally! A lot of people on this website have told me of their stories about exercising intensely and a lot of them have suffered consequences as a result of that, a lot of people will call their stories, "anecdotes" but I tend to believe people's stories on here, so I would just say take it easy and keep your weightlifting at no more than 25pounds. Exercise sessions, somewhere between 30minutes-1hr, remember: take it easy!!!

Staying hydrated and listening to your body is number 1

Eating/drinking: Greek Yogurt and oatmeal are excellent foods for us, those are probiotics and prebiotics. Orange Juice, gatorade, lemonade, and cranberry juice are excellent hydration techniques. And Pedialyte

Make a list of things you need to get done for the day, that is how I stay organized.

Assuming that you’re well hydrated, vigorous exercise can sometimes dramatically improve energy levels.

After dealing with UC, associated inflammatory arthritis and surgeries for over 50 years, the primary things I have learned are acceptance and patience. Inflammatory disease takes what it takes. You cannot force it to your will with anything you do to improve your outcome. Sure, make mindful eating choices, get restorative sleep, exercise, stay hydrated and keep your social scene open.

However, the skill of acceptance of things as they are is liberating. It does not mean surrender. It means adapting to being flexible, so you can accommodate the days of low energy. Also, take advantage of good days with more activity, but hold back a bit so that you do not “crash” the next day. If you do crash, don’t beat yourself up about it. Just consider it a learning experience. It takes a long time to gain back your resilience after being beaten down by UC. Give yourself that time.

Jan

Great advice from everyone.  Having this site is a blessing.  I wish I had known about it when I had J pouch done.  They say  it's your new normal a new way of life.  Remember this haba na haba means little by little.  Take it day by day.  Best wishes for your outcome.

@tf posted:

Great advice from everyone.  Having this site is a blessing.  I wish I had known about it when I had J pouch done.  They say  it's your new normal a new way of life.  Remember this haba na haba means little by little.  Take it day by day.  Best wishes for your outcome.

You are so welcome love! I wish the same thing too! It would have been super helpful if I knew about this website too at the time of my surgery too, oh well lol. What language is haba na haba???

Swahili

@tf posted:

Swahili

Cool! Thanks! Your in Africa?

My advice is stay positive! Keep in mind lots of people who have J-pouches have no problem and so they don't post here! I have had minimal problems since my surgery about 8 years ago, and I'm 75! I had ulcerative colitis since junior high school, flareups every 10-15 years until finally my gastroenterologist found pre-cancerous area in the colon and told me to have it out. Surgery was laparoscopic which I assume yours will be - minimal scars and easy recovery. At the beginning there's an adjustment with soreness, itch, etc., but that goes away, you get used to how your new intestinal situation works, and you should be much better off than you have been. This is not disabling. Drink a lot of water, eat healthy, get out into nature and with friends, get involved in stuff, and you'll see that your life is going ok. Hey you're 21 with lots of good things ahead.

@Curly posted:

My advice is stay positive! Keep in mind lots of people who have J-pouches have no problem and so they don't post here! I have had minimal problems since my surgery about 8 years ago, and I'm 75! I had ulcerative colitis since junior high school, flareups every 10-15 years until finally my gastroenterologist found pre-cancerous area in the colon and told me to have it out. Surgery was laparoscopic which I assume yours will be - minimal scars and easy recovery. At the beginning there's an adjustment with soreness, itch, etc., but that goes away, you get used to how your new intestinal situation works, and you should be much better off than you have been. This is not disabling. Drink a lot of water, eat healthy, get out into nature and with friends, get involved in stuff, and you'll see that your life is going ok. Hey you're 21 with lots of good things ahead.

Do you have more bms now versus 8 years ago???

Can't remember. But I do go a lot. It doesn't really bother me - I accept it's my new normal.

@Curly posted:

Can't remember. But I do go a lot. It doesn't really bother me - I accept it's my new normal.

I agree as well! i go close to 20x a day, i am use to it too. I never had pouchitis either. Since I am constantly emptying out bacteria, I think that is what is saving me from it.

I got  a jp pouch  in 2008 and I do have problematic issues. As years go by new issues appear. Right now I have this constant nausea that doesn't let me eat. Even though I don't eat that much, my swollen abdomen seems like I'm pregnant. I developed kidney disease which I really don't know why or how.  I go restroom whether I eat or not. I would say I go 10 times, sometimes more. I never had a restful night ever since I got this chronic disease. I have bowel incontinence during nights only and have to wear a pad. I developed this horrible illness after I went to a diet clinic in Mexico.  I've changed so many colorectal surgeons and gastroenterologists. I'm tired and I am not happy 😕

@Unhappy posted:

I got  a jp pouch  in 2008 and I do have problematic issues. As years go by new issues appear. Right now I have this constant nausea that doesn't let me eat. Even though I don't eat that much, my swollen abdomen seems like I'm pregnant. I developed kidney disease which I really don't know why or how.  I go restroom whether I eat or not. I would say I go 10 times, sometimes more. I never had a restful night ever since I got this chronic disease. I have bowel incontinence during nights only and have to wear a pad. I developed this horrible illness after I went to a diet clinic in Mexico.  I've changed so many colorectal surgeons and gastroenterologists. I'm tired and I am not happy 😕

I am sorry you are unhappy! If you ever need someone to talk to, message me.

It sounds like you’re doing all the right things. I have dealt with similar issues.  It sounds like you might be suffering from depression, which can cause extreme fatigue. An antidepressant may help. I was initially reluctant about taking anything, but I will say that it has saved my life. It has helped me deal with this incredulous disease. Good luck to you

I can tell u that I'm on a antidepressant; it's a very low dose.   My dr advised me it's like a maintenence drug.  This disease can & will run u down physically & mentally.  I have a Jpouch, in the beginning years it nearly took me over the edge.  I believe in meds, definitely to relax me when it's a really hard day & night. I take vitamins too. Find a diet that fits for u & exercise is a must.  Even at that it's a struggle but liveable.   Best wishes & know this group is a life saver. Prayers for u.  That's my #1 savior.