I think it would be a wonderful idea if we could discuss what is working for us and helping our symptoms. Also, what about foods that seem to help. We don't need to limit this list to strictly pharmaceuticals, herbal medicines work as well. Also, things like soaking in warm baths help my pain. Just a list of helpful hints we could compile and print so when we are going through an episode or if you are like me, and struggle daily, we can look at the list and try some new things. Also, maybe some inspirational quotes, scriptures, anything. We need to support each other to get through this. So please, I really would like to make the "Get Through This List" What do you guys think? If you like the idea, I will start working on my list. Thanks everyone! I think if we join forces we can live better quality lives. God Bless!

This message has been edited. Last edited by: Lindsey Gurr,

I, like you struggle with pouchitis most of the time. Things that help me are:
1. small meals, no spicey, acidic stuff,

2.heating pad, I love that thing and have several in different locations around the house and one in the car with a converter.

3.Vicodin when painful or acting up.

4.Something to slow down the bowel especially late afternoon, currently have tincture of opium (I don't have a dose that works yet).

5.Naps because I am really tired because my iron is low.

6.Prayer to get me through it all. sleeping on my side, either one helps.

7.My anal area is always sore so I use calmoseptine mixed with vasoline, analpram, xylocaine that burns bad at first but gives relief, Ilex when it is more than just the anal area, Tucks, lanolin, anything with zinc oxide in it.

8.Mostly it is just one day at a time and trying to not get discouraged. I look around and see how much worse it could be.

9.I also try to get out of the house and out and about with people to talk about other things

I cannot thank you enough for responding to this. I think we could get together enough info that the Get Through This List could be distributed in colo-rectal surgeons offices for those thinking about having the surgery and for after having the surgery. It will also help the j pouchers that are already out here. I think it would be wonderful to do this, there isn't anything like that yet. And perhaps it would make the j pouch.org some profits to continue research and a place for us to come together online. I am still working on my list, I love a few things that you do on your list, and Calmoseptine is wonderful. I never thought about making a mix but am going to give that one a try. Also, heating pads and hot baths help. But this could really help so many of us and I once again greatly appreciate your response. After it looks like we have a good number of responses, I am going to compile the answers and get the master list posted.

OK everyone, here are the items I came up with for the Get Through This List. I truly believe this list will really help a lot of us and others. If we choose to, we could even put in a before surgery section with questions to ask your surgeon, tips on finding a good surgeon, what to expect, etc...Then do a post surgery with the same kind of deal as far as questions to ask, what to expect, maybe even contact numbers for support buddies from jpouch.org. I really cannot tell you all how much this project means to me. It has been something I have wanted to do for years and now I have found a place with great people that are willing to take the time out of their busy days, probably not even feeling well, but took the time to write your list. I think this will be a great project and if anyone would like to help or has ideas please let me know. The Get Through This List Brainstorming Info follows:

Get Through This List
Brainstorming Sheet

Ways to Nurture your body, mind and spirit during episodes

Inspirational Quotes

Pharamcueticals

Holistic/Herbal/Alternative Medicines

Coping Mechanisms (keeping your mind strong during episodes)

Exercises, Yoga, etc

HI Lindsey, I dont think I have mastered the art of surviving pouchitis, I am still trying to work it out, but my lessons so far..

Get Through This List
Brainstorming Sheet

Ways to Nurture your body, mind and spirit during episodes
- Meditation
- warm baths with oils or something yummy.
-early to bed
- juicing - carrot / apple / pineapple

Inspirational Quotes
-No particular quote, but when I read the forum there are always people worse off than me so that gives me strength.

Pharamcueticals
- Panadol / aspirin

Holistic/Herbal/Alternative Medicines
- Spirulina - makes me feel like I get some nutrition when I can't each much fruit / veg.

Coping Mechanisms (keeping your mind strong during episodes)
- meditation

Exercises, Yoga, etc
- generally don't have much energy when sick with pouchitis - but try to walk on the beach, or ride my bike.

hi i have issues with ongoing pouchitis and various food issues..

i must take antibiotics at all times to avoid unbearable pouchitis symtoms..thus to avoid my body from resisting antibiotics i rotate four different antibiotics..this is a life saving system for antidependent sufferers of pouchitis..i rotate anywhere from 2 to four weeks..


other than antibiotics i take other drugs when necessary such as tincture of opium to slow down system..it works best for me when i use it only when i need it..

for spasms where you have waves of feeling like you have to go i use hyomax

for firming up if i feel it necessary i use medimucil waffers

for butt burn usually caused by something i ate i use vaseoline in and outside and to soothe and relieve pain of butt burn i use a sithe bath(which is just a plastic type bowl i fill with very warm water ,it sits on toilet and i soak my sore butt ,then i take a vicodin..

everyone seems to have there own butt burners..mine vary..i try to stay away from processed foods..the more fresh food it is the better..

too much sugar can be an issue

too spicy foods can be an issue

to many raw veggies can be an issue

peanut butter is a problem for me..

to much food in one sitting can be a problem by creating having to go to much and very frequently,thus setting up irritation and butt burn,feelings of straining to relieve self..smaller,frequent meals better..

meditation and exercise helps keep me balanced..

constant issues with pouch can cause depression..one should seek help for depression and in my case i take an ongoing antidepressant..

i take a daily probiotic..not sure it does anything but because i take antibiotics all the time i think it a good idea..

i do not count how manty times i go in a day..it makes my day go better

besides exercise and meditation getting enough rest i find important to deal with the stresses of dealing with no colon issues i have..

appreciate those feel good days..

being grateful for this site..it is a must for people who have the jpouch surgery and issues thereafter..

well that is my list

rebecca

At the onset I take scripts Cipro and Flagyl which clears it up within days.

I just read your posts and I have tears running down my cheeks. You guys are the first and only people that understand what this is like. I have a severe make you cringe butt burn and now I know that others of you get it. Thank you so much. This list will help so many, and will save me!

After getting out of a warm bath and you are all clean, try blow drying the skin in the area and then slathering on a protective coating like Bag Balm. Do not use products with alcohol in them on that skin. A nurse advised me to use Tucks and they caused a lot of irritation and discomfort and made matters worse.

Do you know where I can find Bag Balm. That sounds like it would really help me. Thanks!

I've seen it at pharmacies and even big chains like Target. It comes in a green square tin. Hope it helps!

Thank you so much. I will get that today. How are you feeling this morning? Do you have sleep problems from this too? I know I do. I wake up every few hours to go to the restroom, and my pouch hurts so its hard to fall back asleep. I really hate this.

This thread is a great idea Lindsey, here is what I could come up with.

Ways to Nurture your body, mind and spirit during episodes:
Remind myself to move around every so often even when I feel like crap and lying in bed all day.
Remind myself to drink when I'm not thirsty
As others have said, eat smaller lighter meals.

Inspirational Quotes:
"You can't really be strong until you see a funny side to things" Ken Kesey

Pharmaceuticals:
Xifaxan, opium tincture for frequency

Holistic/Herbal/Alternative Medicines:
Coconut water, cod liver oil(heard good things about omega 3 and need the vitamin D)

Coping Mechanisms:
Try to stay focused on some sort of project. Even if I can't keep focused all the way through, still try.

Every once in awhile, go out and do something even if I'm not quite up to it. Don't worry about how I'll find a clean bathroom when I need one, just deal with it when it happens. Forget about how exhausting its going to be, make a survival mission out of it and recover over the following days. It's rough on the body, but it gives my depression a good kick in the butt.

Exercises, Yoga, etc:
I can't exercise very much without my stomach cramping up but I've been working with a physical therapist which has been very helpful.

I just wanted to add that I really believe in the power of positive affirmations. I think it's really beneficial to think and say, even out loud, that your body will heal and will restore perfect health again. For instance, you can say "I'm getting better" over and over, and each time, with more conviction. Or, "today is going to be a good day" and imagine yourself eating foods you like without any pain.
It's a great way to really believe it and kind of manifest the idea into coming true. You guys are in my prayers! Stay strong..



Dawn

well I have a few things, many similar to those listed already....
1.meds - pain pills in particular
2. hot tea
3. hot bath with epsom salt and some nice tunes
4. writing in my journal
5. a nice movie with my pup
6. a nice looong nap