Hi!

Trying to learn a bit more about diets and food for us with j- pouch and Crohns. Have read some of the earlier posts about this and found some good tips. 

Since my j-pouch surgery I have been able to eat almost anything and have not used any medication. Some small inflammation in the pouch now and then but nothing more than that. But no everything has changed...

Short about me: I was diagnosed with UC 11 years old (1986), cancer coli (1996),  got my J-pouch (1997) and now in 2017 surprisingly my diagnose changed to chrons with inflammation in the pouch and 40% of the small intestine. 

Been trying to get control over the inflammation by using 9mg entocort and have started with Humira (7 weeks ago). Still not feeling so great but hope Humira will help me.

I have accepted that my years with no medication probably is over, and also realized and experienced that I cannot eat everything I like anymore. 

But I find it difficult to figure out which food is good for me and which to avoid. 

Wondering if any of you with Crohns and j-pouch follow any diets and what food/drinks that seems to be the best and worse for you?

Do you avoid gluten and lactose?

Do you have any favorite Christmas snack that is nice to your intestine?

- grateful for any tips -

 Wish you all a merry christmas,

best regards Cath75/ Norway 

Original Post

It’s very individualistic as to what foods are good or bad for each Pouch, but as a purely scientific matter excessive sugars and carbs are bad for the Pouch because they breed bad bacteria and small intestine bacterial overgrowth, or SIBO, a situation we are all at risk for due to the structure of the J Pouch and specifically there being no backsplash valve as with the colon. A diet that has fiber and whole foods, if tolerated, which promotes regularity and not fecal stasis, helps prevent SIBO (and inflammation), as does a diet low in sugar and processed carbs. 

I’m sorry you’re going through this, Cath. Specific diets don’t seem to consistently help folks with Crohn’s. Since it’s a “relapsing/remitting” disease in many cases, it can seem like whatever change you made just before a remission must have caused it. Nevertheless, it’s also possible for particular dietary things to be troublesome for an individual. The two diets I would consider trying are the Specific Carbohydrate Diet (SCD) and the low FODMAPs diet. Nevertheless, neither has a high probability of success, and there’s a real risk of getting stuck on an inconvenient diet because (for example) the Humira started working at the most misleading possible time.

Good luck!

While I agree with most of what Scott posted, I think some research has shown that low carb, low sugar diets like SCD or low FODMAP work over the course of time and a benefit may not be immediately observed.  These diets work to reduce bad bacteria populations and it takes many months to see those particular benefits.  Hence any benefit may not be palpable or discernible in days or weeks.  However, we have a board of posters who, like sports fans who want to see immediate results from their team, don't want to hear promises about improved performance some unspecified time in the future.  These diets are not necessarily built to produce immediate results but over the course of time can make a difference.

There is no magic pill diet that works for everyone, and trial and error over the course of time is the best way to go.  I am on an annual scope cycle due to Crohn's/inflammation of a chronic nature (and dysplasia pre-colectomy), and dietary changes I made in the past showed up on my scope results.  I generally avoid processed carbs and sugars, and I feel like that has made a difference.

Thank you for your responses CTBarrister and Scott! Trail and error seems to be the way to go... So far I cannot find any sure connection between what I eat and how I feel. I often feel that I do everything right, but still get worse. It is frustrating and I tend to blame myself for not eating right and therefore getting worse. 

Have looked at the SCI and low foodmap diets but a bit unsure about starting a strict food regime. Also, when I remove the food that is not so good for the pouch, the yes-list gets really short.

Entocort  doesn’t seem to work that well anymore. New injection with Humira tomorrow. 

Guess I have to call the hospital to hear if there is anything else to try (ciproxin maybe?)

Have lost a lot of fluids for 10 days no and feel tired all the time so need to fix this.

Hope to feel better soon - our kids are soooo ready for Christmas ;-)

Best regards, Cath 

 

 

Cath, I just posted a similar post, and am wondering how you did with Humira. I REALLY don't want to start on it, because I am starting to try some of these diets. What side effects have you had on Humira, and tell me anything you can about it. THANKS!

 

Hi!

I had to stop humira after just 4 months. Not due to side effects (I didn’t notice any) but because I immediately started to produce antibodies. So humira didn’t have any effect on me.

Have used cipeoxin, entocort and cortisone and at last the inflammation has calmed down. The doctors would now like to see how long it takes before I get worse again. And then they will consider starting up with remicade (or similar medication). 

Wishing you you all the best. I believe Humira really helps many, but unfortunately not all. I was worried about side effects and especially cancer related ones. I had cancer colon 25 years ago but felt that the medication was safe for me now. And that the possible side effects of the medication where less frightening than the side effects of having a very active inflammation.

So far I still cannot find a clear connection between what I eat and how I feel. My doctors advised me to think that what is healthy for other not necessarily is healthy to me ;-) So low fibre bread, not too much vegetables and fresh fruits seems to work for me. 

good luck 👊🏼

Best regards,

Cath 

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