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03-04-2013, 11:06 AM   #31
AlliRuns
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Zxcvb, I don't think there is anything you can eat that will prevent a fistula, however, once you have one, nuts, seeds, corn, anything too rough will make things more painful.
03-04-2013, 11:13 AM   #32
zxcvb
 
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thanks, yea im on a plain chicken, white rice, bread, and mashed potatoes diet from my GI.
03-04-2013, 03:18 PM   #33
Catherine
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My daughter has a fistula further into small bowel. You want to know where the fistula goes. My understanding is that humira, remicade and aza are all used to try and heal fistula. Pred is good for inflammable bit doesnot help when trying to heal a fistula.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
03-04-2013, 04:27 PM   #34
Grumbletum
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Hi zxcvb. Sorry to hear about your diagnosis - it's a lot to take in, huh? A fistula is basically a tunnel caused by inflammation and doctors here often refer to it as a 'communication' between internal organs which shouldn't be there i.e. between the bowel and the bladder. Like the others have said, they will probably try meds to see if they can close the fistula and prevent the abscess.
Getting the inflammation under control will be important for this too and food wise, I guess trying to avoid anything which aggravates your symptoms. It might be worth keeping a food diary or trying an elimination diet to identify the foods that make you feel worse.
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Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
03-04-2013, 05:08 PM   #35
cap13
 
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Hi all. I'm brand new here and happy to have found the site. Two questions for you. First, after 18 months struggling with recurrent fissures and anal abscesses, I've now been told I have a fistula and am having a fistulectomy in two weeks. While I'm hoping the procedure will help resolve this issue, I'm dreading the recovery. Any tips?

Also, I am in my early 30s and have had 15 or so years of stomach problems--alternating diarrhea and constipation, stomach cramping, need to have a bowel movement immediately after eating, etc. Even with the fissures, abscess, and now fistula, my doctor is hesitant to diagnose Crohn's (it runs in my family) because I had a normal colonoscopy in Sept. I can't decide to be happy that she thinks my issues aren't quite as severe or to push more for a diagnosis, especially given the fistula, which apparently does not often occur in a healthy person my age without Crohn's.

I'm grateful to find the group and appreciate any advice you have to share! Wishing you all a day of feeling well!
03-04-2013, 05:50 PM   #36
AlliRuns
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Hi all. I'm brand new here and happy to have found the site. Two questions for you. First, after 18 months struggling with recurrent fissures and anal abscesses, I've now been told I have a fistula and am having a fistulectomy in two weeks. While I'm hoping the procedure will help resolve this issue, I'm dreading the recovery. Any tips?

Also, I am in my early 30s and have had 15 or so years of stomach problems--alternating diarrhea and constipation, stomach cramping, need to have a bowel movement immediately after eating, etc. Even with the fissures, abscess, and now fistula, my doctor is hesitant to diagnose Crohn's (it runs in my family) because I had a normal colonoscopy in Sept. I can't decide to be happy that she thinks my issues aren't quite as severe or to push more for a diagnosis, especially given the fistula, which apparently does not often occur in a healthy person my age without Crohn's.

I'm grateful to find the group and appreciate any advice you have to share! Wishing you all a day of feeling well!
A fistulectomy may or may not help. I had 2, one without seton placement and one with, neither helped. I got diagnosed after, my GI suggested that had I been diagnosed and they treated it as Crohn's before the surgery, it may have been successful.

My colonoscopy was normal as well, I have perianal Crohn's only. I've been put on Remicade.
03-04-2013, 07:23 PM   #37
annawato
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a fistula is an abnormal connection between the bowel and another part of the body, either another part of the bowel or outside to the skin or to another organ. It doesn't necessarily mean there is an abscess there. Diet will not really help in my experience, however people have excellent results with humira and the clearing up of fistulas. If an abscess did form it would probably be drained by the insertion of a needle through the skin. This may be done under CT guidance if the abscess is hard to reach. Surgery would only be needed for an abscess if it kept returning due to a diseased part of the bowel. In that case they would probably remove the diseased part of the bowel and any remnants of the abscess as well s fix the fistula. Intestinal abscesses usually require a stay in hospital and Iv antibiotics. After it has been drained you may need to have a drain inserted so that it doesn't reform.
Hopefully the humira will do the trick for you. Let us know how you get on,
anna
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Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
03-04-2013, 07:41 PM   #38
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Humira loading dose just 1 week ago and already my fistula is healing SO much better. I am totally shocked. I wasn't expecting such a quick result. I hope everyone on here gets better quick! These things are rough to deal with - My husband and I had named mine finally since we talked about it so much. Ha!
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- myriahdawn: 32/female

Crohn's: Diagnosed 4/2011 (Ileum & Colon)
Med: Humira
Vitamins: fish oil, vitamin D, B12 & a multi-vitamin
Surgeries: 2012-2013: Ano-rectal fistula repair & repair again & etc.... 7/10/14 - got a plug/flap combo!!!
03-04-2013, 09:31 PM   #39
AlliRuns
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Humira loading dose just 1 week ago and already my fistula is healing SO much better. I am totally shocked. I wasn't expecting such a quick result. I hope everyone on here gets better quick! These things are rough to deal with - My husband and I had named mine finally since we talked about it so much. Ha!
Named mine too, Charlotte and Charlie.
03-05-2013, 08:30 AM   #40
zxcvb
 
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Hi zxcvb. Sorry to hear about your diagnosis - it's a lot to take in, huh? A fistula is basically a tunnel caused by inflammation and doctors here often refer to it as a 'communication' between internal organs which shouldn't be there i.e. between the bowel and the bladder. Like the others have said, they will probably try meds to see if they can close the fistula and prevent the abscess.
Getting the inflammation under control will be important for this too and food wise, I guess trying to avoid anything which aggravates your symptoms. It might be worth keeping a food diary or trying an elimination diet to identify the foods that make you feel worse.
thanks for the info, more than what the dr explained.
03-05-2013, 08:35 AM   #41
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so my MRI that showed the fistula was last tuesday, i was in pain all last week. friday they put me back on flagyl, on entocort, and ive been on pentasa. Sunday they pain was not so bad yesterday also it seemed to become less. Today there is mainly discomfort not pain. Is that because the inflammation has gone down? or could it mean the fistula is healing itself? Is the fistula what caused so much pain? i wouldnt eat anything and i was in pain. Now i feel somewhat normal, besides the bathroom time, the stomach feels a little discomfort but not the pain it was for the past few weeks. Im just concerned if its just the pentasa and entocort making me feel good now and the fistula still there open? or does that mean the fistula is healing which im hoping for.
03-05-2013, 09:51 AM   #42
bigtruck
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Hi there did the doc say where the fistula was? I assume its peri anal, the flagyl is a great drug for that area, I would imagine its calming things down I think it would be a bit early for healing yet as they tend to be tricky little buggers! Has your doc mentioned treatment with azathioprine or 6mp as they have proven useful with peri anal crohns whereas the results with pentasa are very conflicting with some claiming they're next to useless. The entocort has a lot less side effects compared to prednisilone but only targets a certain area of bowel.
03-05-2013, 11:56 AM   #43
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the crohns and fistula he said are in the terminal illeium, if that makes sense. i have the paperwork but not with me right now. does a fistula cause the pain though? because yesterday and today the pain is becoming less and less it seems. like discomfort right now, not the pain that had me crouched over last week. No talk of azathioprine, but he mentioned humira. My promethius test came back positive today. its like i dont know if i should be happy they know and can treat it properly or if i should be upset. honestly i like to eat, and i fear this will stop me from eating what i want and like.
03-05-2013, 01:51 PM   #44
bigtruck
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The fistula may be causing some things to by pass part of the bowel, if its inflamed and thickened food may be struggling to pass through the narrowed section, have you ever had surgery or has it been discussed ?
03-05-2013, 01:56 PM   #45
bigtruck
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Just to add I think you are in a much better position now once you've been diagnosed, you can now receive the treatments you require to improve your quality of life. Keep thinking positive and let us know how things are going.
03-05-2013, 02:19 PM   #46
Tuff
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I had better join here as well. I have severe Crohn's, in my colon and rectum. My fistulas were described as a "bowl of spaghetti", after two years I still have two that are draining under the skin, and possibly a recto-vaginal fistula. Having an MRI in April. The lining of my large intestine was ulcerated, and is now scar tissue. I had one awful rectal abscess, and don't want to experience that again. An ileostomy no longer scares me. The surgeon said that is my next option.
03-05-2013, 02:58 PM   #47
Catherine
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Zxcvb

You and Sarah have the same type of fistula. This type don't usually cause a lot of pain but are really hard to heal with meds.
03-05-2013, 03:03 PM   #48
bigtruck
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Hi tuff my rectum is also a mess I have had many abscesses in that area and it has been described as a rabbit warren, at the min I have a loop colostomy but around 70% of my faeces still passes through the rectum! I have a sinus on my groin that used to pass gas and the thought is it is coming from the top of the rectum. I've been on 6mp for over a month now and am waiting on an MRI to see if they can identify where it comes from.
03-05-2013, 03:06 PM   #49
bigtruck
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Zxcvb

You and Sarah have the same type of fistula. This type don't usually cause a lot of pain but are really hard to heal with meds.
Indeed I think resection of the diseased portion of bowel is the best option followed by treatment with immunosuppressant drugs and hopefully achieve a long remission.
03-05-2013, 03:25 PM   #50
zxcvb
 
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The fistula may be causing some things to by pass part of the bowel, if its inflamed and thickened food may be struggling to pass through the narrowed section, have you ever had surgery or has it been discussed ?
thanks, i never had surgery, and it has not been discussed as this whole thing is still new to me. my pain and D have only started about a month ago. never had a problem before then. Pain was mild but no D first. Felt ok so went out that night and we ate buffalo wings for appetizer and a steak salad. so i guess that caused the small intestine to inflame further. thats night the pain was extreme. the next day as well. and thats when i went to the hospital. they did a ct scan and said crohns. i went to a gi, he did a ultrasound, mri with contrast and Prometheus test. ultrasound negative, mri and Prometheus positive for crohns. the MRi showed a fistula forming he said in the small intestine. I was then put on entocort, and for about a week before had been on pentasa. Going to a another GI for an opinion. But the first one basically told me eh i dont know take these and we hope for the best. my one question is will i ever be able to eat anything i want again? will i ever be able to eat a steak again or Chinese food or wings when i watch a game or is my life going to be different from here on out?
03-05-2013, 03:34 PM   #51
bigtruck
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To be fair diet is a very much an individual thing and what one person can eat with no trouble may have another doubled in agony, personally I have had Crohn's for over twenty years and can eat and drink most things, I would hope once you recieve the correct treatment you shall be able to eat what you please, the biggest problem is if you have a strictures which is a narrowing of the bowel, hard to digest and fibrous stringy foods can be hard to go through the narrowing causing pain and often partial or complete blockage. I wish you well and keep us posted.
03-05-2013, 03:42 PM   #52
zxcvb
 
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Zxcvb

You and Sarah have the same type of fistula. This type don't usually cause a lot of pain but are really hard to heal with meds.
thanks i guess thats why im going for the second opinion.

thanks bigtruck. Kinda excited to see what they say with the second opinion. im feeling pretty good now. almost no pain as to a week ago i was in extreme pain.
03-05-2013, 03:52 PM   #53
Catherine
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We have had the surgeon opinion we are going to try and meds first. Sarah disease appear to be 18 cm in length 10 cm higher than a colonscopy can reach.

My daughter is a competitive swimmer training between 12 and 16 hours per week.
03-05-2013, 05:31 PM   #54
AlliRuns
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We have had the surgeon opinion we are going to try and meds first. Sarah disease appear to be 18 cm in length 10 cm higher than a colonscopy can reach.

My daughter is a competitive swimmer training between 12 and 16 hours per week.
If I knew prior to my surgeries what I know now, I would have opted to go the medication route first as well (if my medical plan would have covered it).
03-05-2013, 06:03 PM   #55
Grumbletum
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My fistula originated in my terminal ileum and was connecting my bowel and my bladder. I had a lot of pain when I first became ill, in my pelvis cos of an abscess connected to the fistula and in my LRQ cos of inflammation in the IC valve area. This pain reduced significantly when I was put on Prednisolone.
As you'll see from my signature, my doctors gave the med route a fair go and for a while I think the fistula did close when I was on Infliximab, but 6 months after I came off it, my symptoms returned. I believe people can have an intestinal fistula without pain, depending where it is. I did have pain - spasms in my pelvis from UTIs and ( sorry if this is TMI ) gas and fecal/food matter passing into my bladder from my bowel.
Like Catherine says, it's been proven that internal fistulae don't often heal on meds.
I know, it's a lot to take in in a short space of time. The good thing is that they have identified the fistula early in your case, as some people can have these things drag on for months or longer.
03-06-2013, 07:28 AM   #56
zxcvb
 
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does anyone else have like grains in their feces? it has been a few days and looks like corn starch or tiny seeds. and theres alot of them every time. Not sure if its from the meds maybe? anyone else have this problem or should i mention it to me GI
03-06-2013, 07:39 AM   #57
bigtruck
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Pentasa can cause small gritty grains in faeces, or are you eating anything else with grains or seeds in it.
03-06-2013, 07:46 AM   #58
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no im being careful to not eat anything with grains or seeds. Ive been on pentasa for 2 weeks and this only started maybe sunday.
03-06-2013, 04:29 PM   #59
Essieluv
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Count me in! I have struggled with fissures, fistulas, and abscesses since being diagnosed. It is nice to know that I am not alone.
03-07-2013, 12:55 AM   #60
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Thankful to have found this group. I have gone from having a couple fistulas for years, now the Dr telling me that I should consider an ostomy because there are fistulas everywhere down there! Setons places Feb. 1, not sure if they are helping yet or not. Not really sure what to think about all of it.
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