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Both daughters with IBD, Crohns, one with fistula

Hi, I am writing concerning my daughter. She has just been diagnosed with IBD or Crohn's and enterovesical fistula. The doctors say they need to remove the inflamed colon area and half of her bladder. Is there any way other than surgery to heal a fistula of this type? Her younger sister also has Crohn's and has been hospitalized twice, once at diagnosis, and keeps it under control with no meds and careful diet. She did not have fistulas, but initially was vomiting often and they said her ileum area was so inflamed there was only a tiny area of opening. Any help would be appreciated! Also, any thoughts on carageenan? Both of my daughters have been vegetarian from birth. The first daughter mentioned is vegan and the second is mostly vegan vegetarian. And their father is Ashkanazi Jew!
 

DustyKat

Super Moderator
Hi pastelrainbow and :welcome:

I am so very sorry to hear about your daughters. :ghug:

I also have two children with Crohn's and both have fistulising disease. In our case they both required surgery but that isn't always the case. Do you know where in the bowel the fistula originates from? One of the biologics, Remicade, is renowned for having a good success rate at healing fistula's that originate low in the large bowel but it isn't as successful at healing those that start in the small bowel. Grumbletum and others have had the same sort of fistula as your daughter, you might like to have a look at the fistula sub forum:

http://www.crohnsforum.com/forumdisplay.php?f=76

I am not overly familiar with carageenan but David is well versed and there is also a wiki entry about it:

http://www.crohnsforum.com/wiki/Carrageenan

My daughter is vegan/raw vegan. Her diet wouldn't suit many people that hang out here but it seems to serve her well. :)

Good luck with your girls and welcome aboard!

Dusty. :heart:
 
thank you, Dusty! She said they told her the fistula is on the right side of her bladder, I will ask for more specific info. She is 37, my other daughter is 35. The 35 yr. old had some problems, but seemed to go into full blown CD after her first MMR shot of her life. This was about 6-7 yrs. ago.
 

DustyKat

Super Moderator
There has certainly been some lively discussion on the forum about the role of immunisation in IBD. Do you mind if I ask why she received MMR so late in life?

Dusty. xxx
 
Hi pastel rainbow and a big, warm welcome to the forum. Like Dusty says, I had a similar fistula which they tried to treat with meds. I was on Pred for 6 months along with Mesalazine, and they introduced Azathioprine about 2 months after I started on the Pred because they discovered the fistula and abscess on the bladder, and antibiotics on and off for the UTIs caused by the fistula.
My local GI actually referred me to a mainland surgeon in 2011 as the drug combination didn't seem to be working, but by the time I got my appointment there, things had really improved on the fistula front and they advised me to try Infliximab/Remicade for the inflammation I still had in my TI.
After a clear colonoscopy, they declared I was in remission but 6 months after stopping the Remicade, I started getting symptoms from the fistula again and they recommended surgery.
Half of the bladder sounds a lot, so it could be that the fistula is particularly large and/or complex? Does your daughter suffer symptoms because of it?
 
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