Hi All,

I'm new here, wish I would have found it years ago to help support others.

My pouch is glowing after almost 18 years in December. In fact my doc said she's a "beautiful" his words...hehe

I did have some ups and downs the first 8 years with the occasional pouchitis, bowel obstruction, severe diarhea, butt rashes..you name it! But she's made it through many life events including a 10lbs 11 ounces baby boy at the age of 40!

I'm also a raw food vegan (yes it is possible to eat all raw veggies), my pouche's health improved dramatically after I removed everything white from my diet.

I look forward to chatting with many of you.
Blessings,
Lisa

Hi Lisa, I'm also 18 yrs out with J-pouch! I have had many hospitalizations in that time with obstructions, but for the most part it's been good.

I just got a juicer this week and have been trying new green drinks. I really like taking my veggies this way. For me it's much easier than eating raw or even cooked veggies. I feel good that I am getting all this awesome nutrition and it's so easy. Just drink up!

Anyhow my question to you is ~ how do you eat out/travel or visit friends etc with your "raw" diet?

I am going on vacation this week and I always find this a challenge. I can control what I eat at home but away is a different story. I am vegetarian and don't do dairy but not 100% vegan yet.

Jane

Ps ~ big baby! lol

Lisa
I got my Jpouch in Dec 93 also! Many ups and downs, have trouble with chronic obstructions. And now diagnosed with Chron's. But still "pouching" along!
Shannon

I'm so sorry Shannon about the Chron's diagnosis. I remember when I was contemplating the surgery one of the questions I asked is..."if I don't have the colon for the disease to go after, then where will it go?". No one could answer it, in fact they all that it was a silly question because if your colon is not there then you won't have it...Bull****! I was and still am a firm believer that UC is an autoimmune disease, NOT a colon disease.

Sure enough within a few years I was diagnosed with Interstitial Cystitis", INFLAMMATION IN MY BLADDER!!!! So, with nutrition I took care of that one, then after my husband died and high stress I was diagnosed with Fibromyalgia...INFLAMMATION OF THE MUSCLES!!!

Obviously for me it not about the colon, the bladder or the muscles...there is a core problem somewhere.
When I removed everything white out of my diet that's when I started to see changes, still not sure exactly what it is, but I'll be damned if I'm going to be on meds like I was my entire 20's.

So, my point is Shannon, that there must be something else going on and the medical community does not have all of the answers.

Ladyjane~ I do what I did when my kids were little and that is to always be prepared with food, fruits and nuts are really easy to carry around and eat at any time.
because I've had so many issues with this disease and that disease most people don't ask why or frown on my food choices.
Hope this helps.
Lisa

My doctor told me that just because they removed my colon, UC will always be in my blood.

I think when researchers finally unlock the key to UC and Crohn's they will find various spectrum's of the disease. I find it interesting that some UC patients have flares that are triggered by known foods, others like me could never find a food correlation. I also find it interesting that some j-pouch/ostomy patients continue to have inflammatory issues post-colon while others have no inflammatory issues post-surgery. If researchers find the code to better understand IBD they might also learn that there will be differing treatment protocols based on the sub-type of IBD.

Sue

So Lisa, do you think the reason for all our obstructions post J-pouch surgery is that we still have the disease? I used to think my obstructions were just due to scar tissue but a few months ago when I had my c-section they told me there wasn't much scar tissue so now I'm wondering if it's related to the disease and these obstructions are just inflammation of the bowels.

I've had my J-pouch for 13 years (I got it when I was 16) and I get obstructions that require hospitalization at least once a year. I was diagnosed with UC but my surgeon always suspected I really had Crohn's.

Hi all, I too think there is an underlying systemic problem going on besides UC in the colon. I had an MRI of my brain in 2007 because I had MS like symptoms and lesions showed up in the brain. Since then the Neurosurgeons think that the desease process going on in the brain is from UC - go figure. They did another test last year that ruled out MS for sure - an eye test that by then I should have shown deteriorations and didn't. Thankfully whatever is going on is happening very slowly as MRI's three years in a row have shown! I keep hoping that now that I have no colon the desease process will halt in the brain too. Dare I hope?

That's interesting Linda 2, about the brain lessions. I also was found to have lessions in the brain on a recent MRI. They told me it was just age related,I'm 56,don't know if you are in my age range or what.
Susan

Yes I wish I had found this site long ago, or even a site for UC..as a teenager it was hard to find people in the same boat.. ( back in the late 1970's )I have 20 years of j - pouching so hope that the people who are going thru their current surgeries find some positives thru us ...yes we all seem different in what effects us post surgeries - I have never really had any food problems - but seem to get abscesses at times of great stress, so think my body just diverts its anxiety into different parts of my body - now that its main source for getting rid of it has been removed. It has been interesting to read some people have had food poisoning prior to their UC diagnosis - ( like I did) that that was one of the theories of it being weakening of the bowels defences ( remebering this was back in 1977) so there are still lots of theroies - we just have to work thru it and find out what works for each of us and unfortunatly sometimes we have to just ride out the crappy times too..good luck to you all and wishing you good health too..

This message has been edited. Last edited by: virginiac,

wow, its really encouraging stuff to hear from all of u experienced j pouchers. rock on. May God continue His blessing.

btw, i hav just completed two years of my first surgery

Lisa,

Would really like to know more about your diet. Is simply vegan or more? How did you start it and how long before you noticed improvement? Also what is your day to day menu like? For example do you eat just breakfast, lunch and dinner with snacks inbetween or 6 smaller meals? What supplements do you take or meds? What kind of exercise to do you do if any?

I've had my pouch for almost 10 years and have been in and out of the hospital at least 30 times if not more in the past decade. I've tried all kinds of thngs to adjust and find a way to improve my day to day life but pouchtits has plagued me without mercy. I've just finished a 2 week cipro/flagyl combo, feeling beter than I was but nowhere near 100% or even 75%. I feel like the meds are almost worst than the pouchtitis. I understand everyone has a different tolerance and not all systems are the same but I would love to pick your brain since you have found somthing that works for you and have been through experiences that have made you a stronger person.

Hi Lisa,
So glad you posted. I have come to the same conclusion as you, that the UC is a manifestation of inflammatory auto-immune problems. I have several diagnoses that are auto-immune related and like you, each came after a period of stress.

Age 23, I was backpacking for three months in Equador and Peru and became very ill with a stomach bug. Three months later I was diagnosed with Type 1, insulin-dependent diabeties, an auto immune problem that attacks the islet of Langerhorn cells in your pancreas. I've been on insulin ever since.

Age 40, a huge goiter developed on my thyroid, very commonly associated with Type 1 DM, and auto immune problem.

Age 43, intercystitial cystitis AND ulcerative colitis!

Age 44, vulvadynia (pain in the genital area and highly associated with intercystitial cystitis, Currently, it is regarded as possibly auto immune since they cannot find a cause.)

Age 45, pancytopenia (all blood counts were low and stayed that way for 3.5 years. Usually, pancytopenia is caused by a cancer of the blood, or a virus, but if viral, is very short term. They never could figure out why I had it despite a bone marrow aspiration and blood tests every three months for the 3.5 years.

Age 48, macular degeneration (which I think I got because of the macula being a nutrient rich part of the eye and I was malnourished and emaciated from the UC symptoms.

Age 53, colectomy in Feb. and takedown April 23,(actually just 4 months ago).

I am on prescription meds for all of the above and some vitamins too. I am now starting to experiment more with food and yoga.

I switched from using citrucel tabs to using apple pectin and started using chia seeds. I have only been doing this for two days and immediately felt a difference. My stools haven't been thicker but immediately the but burn and itching went away and my gut feels "settled" and not rumbly and upset.

I know it is too early to know for sure but it has given me encouragement to try to eat more healthy. I can only do veges by making them into smoothies and I eat very little meat. Now, I think I'll try your idea of not eating anything white, assuming you mean flour and sugar.

I am also about to begin pelvic floor stimulation physical therapy which the pelvic doc specialist says is proven to help IC and vulvadynia in most patients, and could have a positive effect on healing the rectal muscles as well.

The journey continues. Thank you for providing such a hopeful message with how you overcame auto immune problems with a healthy diet.

Marcia