Fistulas, Fissures and Abscesses Support Group

Crohn's Disease Forum

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Hi and sorry to hear about the problems you are having with fistulae. In answer to your question, I developed an enormous haematoma on the perineum anti-natally, but had struggled all the way through pregnancy with chronic diarohea and bleeding from the rear end, severe lower right quadrant tummy and lower back pain ++++. in addition, during the pregnancy i developed repetitive abscesses on the perineum also. All of these symptoms had always been loitering in the background for over 20 years, but were much more exagerated whilst pregnant. Straight after the birth, I can only say I went through shear agony when the haematoma ruptured and I was rushed into theatre to wake up and be told by the consultant that a they had found a peri-anal fistula. My daughter is now eight years old and it has taken 17 general anaesthetic surgeries, not including colonoscopies, to get the fistula "kinda sorted with a colostomy, sphincter repair, laying open of tract from outside, etc." I hasten to say I have a wonderful, determined and understanding Consultant and IBD Nurse who remain determined to support me. Having been in remission for the past 4 years whilst taking azathioprine, unfortunately in August 2013, the blooming symptoms started up again and it transpires from copies amounts of blood tests and faecal calprotectin my azathioprine has failed. I am unable to come off prednisolone as pain underneath becomes unbearable each time I've tried and Humira has just been instigated :-S not sure yet if its working, im in gods hands where that's concerned i guess. Hope you this thread goes some way to help that you are not alone where fistulas are concerned, i think its safe to say I've been there and got the t-shirt. If nothing else, fistulising crohns has taught me resilience and to research my options. X
 
PS: so sorry to read about the miscarriages, I also had a miscarriage at 5 weeks many moons ago, but don't know if it was crohns related as was only properly diagnosed in 2007. My consultant has confirmed that pregnancy can aggregate crohns, and he advised me to continue taking my crohns meds should I choose to get pregnant again. :ghug:
 
Thanks Tracy, sounds like you had a terrible time with it all. I hope things are much improved for you now. Fistulae are terrible things. I just wish it would all go away. X
 
Welcome to the new people! I only found this forum about 6 months ago but have had Crohn's since 2000, with fistulas pretty early on (since at least 2002). This is a wonderful place to get support and advice.

Remicade is by the far the best of the biologics at closing fistulas according to my doc, and ey218, I am a little skeptical about your doctor's claim of 70% closure on Humira. You might want to research that a little more, especially if you haven't done Remicade yet.
 
Thanks for the heads up, lgpcarter. I have not started Humira yet as my blood work only recently came back. I will speak to my doctor about it.
 
Hi all,

just reaching out for some support in some way. i had a third surgery on my rectum, and am in incredible pain, even with pain pills. so frustrated with this disease, and getting really hopeless. just feel like ending it sometimes. thanks for listening.
 
Sorry you are in so much pain, Stacy. Are you able to do sitz baths at all? I found they really helped me. Hang in there. It will get better.
 
Smack116 don't give up. You have to keep on fighting. Don't let this crappy disease win. Sitz baths do help but so does a little time. The further time passes from surgery the better you will get.
 
Please try and stay positive Stacy, I was where you are now 8 years ago and have had 17 G/A surgeries to fix fistulas to my rear end. Although there where some times when I could've thrown the towel in, I look at my family and realise the support they have given me has been invaluable and I owe it to them to fight on. Im sure you are stronger than this sh*tty disease, so come on, lets fight together!



Just updating my post. Admitted last Saturday as an emergency following shocking pain LRQ, diagnosed with severe crohns flare. Humira working but Azathioprine failed. Now day 6 and writing this from my hospital bed, possibility of bowel resection imminent. That'll teach be not to go thinking so positive and offering bucket-loads of support without looking inwardly first! Wish me luck folks!
 
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Smack116 I was where u are right now on Wednesday! U can do it!
It takes a day or two to clear the fog but u will fight it.


Crohns Disease-Diagnosed 2007
 
Hey guys.
So i had surgery 11/6/13 and not even that slowed the rath of my crohns. Ive been flaring every 5/6 weeks and its just ridiculous. Anyway. I had a fistula (formally named vicktor) from small to large bowel before surgery and I know some people may say its to early from surgery but I feel like I have one again in the same spot and its really painful and flaring doesnt help, my eating has gone back down to my normal 5/6 bites and im done and alot of liquids and it feels like rocks and razor blades going through my side and it girgles constantly and it feels like food is just going through alittle at a time like not alot can go through. Now I could just be retarded and it could all be from the flare im in and my side being really inflamed and ulcerated but I know what a fistula feels like from previous experience and it deff. Doesnt just feel like a flare it feels like it did before. And i might add that my crohns is fistulizing and really really annoyingly super active and nothing seems to stop it. So just thought id put it out there and see what you guys have to say on it. Im just frustrated with how relentless it is. :ybatty: :yrolleyes: :poo:
 
You know your body best! Could be leftover inflammation and scarring from the surgery or could be something new developing. Sounds like you should head to your doc. Maybe they will do an MRI or a CT Scan to see what is going on.

Looking at your meds could also be that you need something a little stronger - have you talked to you doc about changing them at all? Maybe move the Remicade closer together? Or the evil pred instead of the entocort? Not a doctor, obviously, just throwing out some ideas based on my past experiences.

Sorry the surgery didn't help.
 
smack116 said:
Hi all,

just reaching out for some support in some way. i had a third surgery on my rectum, and am in incredible pain, even with pain pills. so frustrated with this disease, and getting really hopeless. just feel like ending it sometimes. thanks for listening.
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Wanted to add that I am now 1 month post-op on my first surgery (just some minor tinkering - 2 setons, fistulotomy, dilatation, skin tags removed) and finally starting to feel almost "normal" again. It does take time and rest.

We are here for you if you need to vent.
 
@Igpcarter- im working on getting my remicade moved closer together. Just waiting on the insurance to approve it. I have talked about changing them we just havent agreed on what will work. And the pred. Yeahhh not happening bad experience with it. Didnt work and broke through it. Pills and iv. Lol i could prob. Use a ct scan now that you mention it. Im also working on getting mtx injections for my really bad joint pain and arthritis and im working on getting a power port put in because my veins are impossible and suck and blow like no tomorrow. I feel like one might be forming just because ive had this weird feeling before I started to flare. All I can do right now is ride with it and take tramdaol lol
 
nini_mini said:
I had a fistula (formally named vicktor) from small to large bowel before surgery and I know some people may say its to early from surgery but I feel like I have one again in the same spot
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I know this is a weird question but what does it feel like? Ive never seen anyone talking about fistulas from bowel to bowel (although I know it happens)
 
Akiva- thats a funny question. In my case before surgery I had a very bad year. The last 5 inches or so of my ileum and ti completely closed up and it was awful and I was in so much pain it was stipid (I prob. Could've spent the majority of last year in the hospital but refused.). Since it closed off it made a fistula from before the closed off part to the end of the closed off part. So food could get through. It was really awlward feeling because I had this ball stuck feeling in my side and then it would girgle and make noise and it would feel lile rocks most of the going through and it felt like trying to fit a pea through a straw. Yeah ouch! Its really weird ill tell you that. And now I have all that feeling again only it feels like razor blades and rocks going through me and it girgles and makes noise (mostly when its quite and its either funny or awkward sounding) so yeah. Idk if that helped to describe it or not. Its kinda hard to describe.
 
that's really useful to know, I gurgle a heck of a lot and have pains in one place, kind of similar to what you describe but not quite, GI did mention he thought I might have a fistula, (I have no diagnosis atm) but ive not had a scan or anything yet to confirm. Thank you very much for sharing :)
 
Your welcome. The way I found out I had one was, I was in a study for xeljans and when it came time for the re test I well failed out of it. So the dr that was on the study sent me for a small bowel follow through and yeah that was a long day but I got to get the cd of images and gave it to my gi and he told me I had a very prominent fistula going from either side of my closer. Im sure a ct with contrast would do the same. Either way its a good way to find out. I wish you luck if you get a scan :)
 
Hey quick question I just realized for months I have had this pressure on my right butt check when I sit down on it. It starts to hurt when I stay on it for long. Is this an abscess?

when I touch the area it feels like rough skin I guess, really not sure how to explain it.
 
@amaze- I have the same thing only its in front on my left side a little in from my hip bone. It feels like a pocket of fluid sloshing around and its really bad constant pressure when I stand or walk and I can't sit or lay down for very long or I get uncomfortable because it starts to hurt. My skin is actually swollen out a bit compared to my right. Ive had a thought that it could be one but I'm too scared to see if it is just because the thought of getting a drain put in scares the crap out of me
 
If it's tender and warm when you touch it, it might be an abscess. See a surgeon right away. Sometimes they can fix it without surgery if they start you on antibiotics asap.
 
True. I'll bite the bullet eventually, lol I'm honestly just so tired of being in drs offices, I swear I live there half the time. Lol the only one I look forward to is my remi infusion
 
^ you ain't kiddin! I mean I'd go to see someone too see if it is an abscess obviously because they're not good. But I don't wanna go through tests if there's nothing wrong ya know?
 
Hah. I lost my dignity a long time ago. I just don't care anymore. I mean I might freak out a little in the beginning but then I'm like **** it I don't care anymore lol just do it so we can get this over with.
 
It makes flares go away and I only have to see that doc every 8 wks. Although it may be 6 if it can get moved up.
 
Hi guys,
I have written a blog post in regards to the home remedy that I have used to dry up my fistula/abscess. I just wanted to share it with everyone in the hope that it can help others with their situation. Please have a look at mylifestylejournal dot com.
 
Hi I have had quite a few fistula's in the past tat started off as abscesses then into fistula's finally had surgery in Jan 2013 have an Ileostomy now which is far more easier than trying to cope with all the fistula's
 
tracyandkevinp said:
Hi all, it is like a breath of fresh air to realise I am not alone in this battle of fistulising crohns. I have been struggling since my little girl was born 8 years ago with a peri-anal fistula. Since then, I have had 17 surgeries, including multiple seton's, plugs, laying open and finally a colostomy. I wish all my fellow crohnies a happy new year and pray that it is a year of healing. x
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Hi, I'm sorry you had to go through all of that. Does the colostomy allow your fistula to heal? Just discovered I have one in my vagina today and can't stop crying....I also read that Remicade only heals 14% of rectovaginal fistulas.:confused2:
 
Jajabinks said:
Hi, I'm sorry you had to go through all of that. Does the colostomy allow your fistula to heal? Just discovered I have one in my vagina today and can't stop crying....I also read that Remicade only heals 14% of rectovaginal fistulas.:confused2:
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Oh no i didn't know this :( i have 2 recto vaginal fistulas :(

Got my Seton surgery on 6th, had two placed and one is still extremely painful and stingy, anyone know if it should still be sore after this long?

My bums killing me too, bloody threads going in are leaning on my piles n skin tags :( is there cream or something i can get for that?

I feel so attractive right now lol
 
Aphrodite_x said:
Oh no i didn't know this :( i have 2 recto vaginal fistulas :(

Got my Seton surgery on 6th, had two placed and one is still extremely painful and stingy, anyone know if it should still be sore after this long?

My bums killing me too, bloody threads going in are leaning on my piles n skin tags :( is there cream or something i can get for that?

I feel so attractive right now lol
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I like to use RectiCare. It has lidocaine in it, so it numbs the area. Any type of cream with lidocaine works well, and diaper rash cream works for the sore areas where the seton rubs against the skin because it protects the area by coating it.
 
smack116 said:
I like to use RectiCare. It has lidocaine in it, so it numbs the area. Any type of cream with lidocaine works well, and diaper rash cream works for the sore areas where the seton rubs against the skin because it protects the area by coating it.
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Lidocaine, thank you, ill get to pharmacy :) everything worth a try
 
Two fistulas, one in remission with Remicade but returns during flares and one abscess treated with hot baths. Lidocaine cream is helpful and can be obtained by script.
 
Hey im new here. Was wondering if anyone has had any success with non surgical treatments for a rectovaginal fistula. Im currently trying humira and Imuran both of which I have been on before for flare ups.
 
Also having horrible leg and lower back aching, iron deficiency anemia, dizziness, night sweats, and chills, rash undet breast, but no fever. Seems like a lot of wierd unrelated symptoms.
 
Welcome!


Fistulas rarely heal with out surgical treatment. I know it sucks. I got two fistulas and I fkn hate them

I have heard that remicade and with the combo of flagyl and cipro some people has had luck with getting theirs closed.
 
I have had a peri anal fistula since Sept 2012 that started with abscess. Had surgery in February 2013 to plug it. Didn't work! Have had 2 rounds of flagyl and that seems to work the best. Nearly closed both times but unfortunately opens back up once I'm off of med for a week or so. Started Remicadee in Jan and have had first 2 doses. So far results are questionable. Some days I think I've made real progress and it's closing and then pain and drainage starts again. Really frustrating but I think overall it's improving. From what I understand Remicadee has a better cure rate than Humira although I'm not sure it's great for either. 60% with Remicadee verses 30% for Humira I believe. I guess fistulas can take some time to respond. My GI has advised me to get through the 3 loading doses and at least 1 more before I pass judgement so I'm trying to be patient. You might want to talk to you Dr about switching to Remi if you don't see a response. Good luck!
 
New to the forums. Have had my two most recent fistulas for almost 2 years. Humira seems to be working on the inside but the fistulas just won't heal.
 
smack116 said:
I like to use RectiCare. It has lidocaine in it, so it numbs the area. Any type of cream with lidocaine works well, and diaper rash cream works for the sore areas where the seton rubs against the skin because it protects the area by coating it.
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I use a product called Sensi-care by Convatec. Usually it has to be special ordered but it's over the counter. It has zinc oxide which provides a dry almost powder type cream barrier that is very effective in not only soothing the skin but helping to keep the skin drier and promotes quicker surface healing.
 
Maxwelljax said:
I have had a peri anal fistula since Sept 2012 that started with abscess. Had surgery in February 2013 to plug it. Didn't work! Have had 2 rounds of flagyl and that seems to work the best. Nearly closed both times but unfortunately opens back up once I'm off of med for a week or so. Started Remicadee in Jan and have had first 2 doses. So far results are questionable. Some days I think I've made real progress and it's closing and then pain and drainage starts again. Really frustrating but I think overall it's improving. From what I understand Remicadee has a better cure rate than Humira although I'm not sure it's great for either. 60% with Remicadee verses 30% for Humira I believe. I guess fistulas can take some time to respond. My GI has advised me to get through the 3 loading doses and at least 1 more before I pass judgement so I'm trying to be patient. You might want to talk to you Dr about switching to Remi if you don't see a response. Good luck!
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Thanks, feeling a little frustrated I looked it up and you're right Remicade is more effective you would think my doctor would have known that also I just found out that with my Humira starter pack I was supposed to inject for pens the first day and then two more two weeks later nobody told me that it only said take as directed and I wasn't given any directions when I took you Mira before I just remembered one every other week so that's how I've been doing it.
 
I am new to this disease (just diagnosed Feb 6). I go to my doctor tomorrow morning to talk about various treatment options. He is starting me on a pill, and is letting me decide the other treatment, either a shot i give myself once every 2 weeks, or i will have to go in for a blood infusion once every 8 weeks. Can anybody tell me the pro's and con's of each one, which one they would recommend, etc. He also told me i have a fistula from my small intestine to my large intestine. I was told they are going to try to close it up with medication first, and possibly surgery if the medication doesn't work. How effective is medication on closing up fistulas? This recent diagnoses has really taken a toll on my wife and I. She is currently 14 weeks pregnant so this added stress is really a nightmare. There is also a chance i will be medically discharged from the army because of this, which as you could imagine with a wife, daughter, and another on the way, is a very scary thing to imagine. Any advice and support would be greatly appreciated.
 
So sorry you are going through so much. This disease is great at messing up people's lives. From what I have learned fistulas respond best to Remicadee infusions. Humira injections have a much lower cure rate. Most of us posting here with fistulas seem to just be starting Remicadee. Ive had the first 2 loading infusions and the third will be in on the 24th. I haven't seen much change yet but from what I understand fistulas take longer to respond. I have read a lot of older posts here from members that have had successful healing with Remicadee though. Good luck with treatment. Oh and congratulations on a new baby coming. That's really exciting and definitely gives you something wonderful to look forward to. Hopefully the military will give you the time to heal. Thanks too for serving our country!
 
Remicade worked on closing my rectovaginal fistula for good. Humira did not work with subsequent fistulas.

I found out I was having night sweats from taking a multivitamin. It didn't matter which kind. I think they contain too many minerals and vitamins and it must have caused my body to try to sweat them out at night.
 
I decided to go with the remicade, I'm also on humira, and an iron supplement, as well as a couple meds to treat H-pylori which they found during a stool sample. They said a lot of people that go to Afghanistan come back with it so it's not a big deal, two weeks on pills and the h-pylori will be gone. But for the crohns I was told I will have to go in front of a medical board and most likely my army career will come to an end. I'm hoping this isn't the case, especially since I'm getting stationed in Hawaii in October. But we will just wait and see I guess. I just hate knowing that the fate of my future lies with the decision of a medical board
 
Hi all. New to the group. I'm 34, diagnosed with UC when I was 19 back in 1999. I had severe problems for a couple of years, and then I had the J Pouch surgery in 2002. Since then, they have switched my diagnosis to Crohns since I have had some perialanal disease/fistulas/abscess problems. I know I am a rare case to have Crohns and the J Pouch. I have no other symtoms or problems other than the fistula and abscess (drained four times over the last 12 years).

I have taken no medication at all in the last 12 years, but due to the reoccuring abscess and fistula, it looks like I will be starting Remicade very soon to heal the fistula once and for all. From What I've read here, Remicade really helps fistulas and abscesses? Also, if anyone on here has a J Pouch, I'd like to converse with them about their experience with it.

Thanks! And good luck to everyone. I really feel for everyone!
 
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That's a powerful drug to go in at! Im surprised the docs haven't tried azathioprine first?

But im certainly no doctor so please don't let my thoughts worry you it might be worth asking the question tho you can always move on to remicade.
 
we discussed the lesser drugs - humira, cimzia, etc., but it was explained to me that remicade had the highest rate of success with my particular problem and that it is important to try and get the best medicine for the job on the first try as opposed to trying one of the lesser ones first because it lessens the chance of the remicade working later. is that correct information?
 
I believe that's correct. I've been told Remicade is the best drug to give a fighting chance of healing fistulas. Humira only works about 30% and other drugs don't really have any affect. You and your Dr have to make the decision that's best for you but I don't blame you for going straight to it. I waited about a year trying other meds and surgery that didn't work. I wish I'd been smart enough to accept the Remicade when Dr suggested it instead of being too afraid of the side effects. Could be healed by now.
 
Hubby has been on Remicade for 4 years now and he still has recurring perianal fistulas, in those 4 years he has had it surgical removed and lanced.
 
I been on flagyl/cipro and enemas for 1-2 weeks now and I think my fistula is getting bigger in size. Fk. I cant see the other fistula since its so close to my anus.
 
Does anyone here experience pulsating in legs and buttocks? Please tell me these aren't more fistulas. :( had an MRI with contrast done yesterday, what a scary experience.
 
Amaze said:
I been on flagyl/cipro and enemas for 1-2 weeks now and I think my fistula is getting bigger in size. Fk. I cant see the other fistula since its so close to my anus.
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If you have a mirror you can hang or prop under a light source then turn around and bend over and try to look, that is how I can see mine sometimes. Before I had a stand up mirror I would open the bathroom mirror so it was open at a 90degree angle then stand on the toilet and do the same. sometimes I can see things with a hand held mirror but it doesn't leave a hand free to touch, feel and open your bum.

Also, antibiotics never worked for my fistulas. the only thing that has worked, for certain, was remicade.
 
Jajabinks said:
Does anyone here experience pulsating in legs and buttocks? Please tell me these aren't more fistulas. :( had an MRI with contrast done yesterday, what a scary experience.
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I have not had any pulsating. Occasionally I get a pain that i'm not certain is from fistulas but cant rule out but that is more of a pressing soreness.
 
Thanks for writing me. :( sometimes I feel I did this to myself for not taking better care of my diet. My doctor told me I could eat whatever I wanted and while in college last semester my diet wasn't so good. That's when my disease spread from terminal ileum to my colon. I flared really badly and I was under treated by my doctors. I'm dealing with so many emotions as of lately. I was never like this before. Also, are mortality rates higher for fistuli zing Crohns? My son needs me.
 
Andy K said:
Hi all. New to the group. I'm 34, diagnosed with UC when I was 19 back in 1999. I had severe problems for a couple of years, and then I had the J Pouch surgery in 2002. Since then, they have switched my diagnosis to Crohns since I have had some perialanal disease/fistulas/abscess problems. I know I am a rare case to have Crohns and the J Pouch. I have no other symtoms or problems other than the fistula and abscess (drained four times over the last 12 years).

I have take no medication at all in the last 12 years, but due to tihe reoccuring abscess and fistula, it looks like I will be starting Remicade very soon to heal the fistula once and for all. From What I've read here, Remicade really helps fistulas and abscesses? Also, if anyone on here has a J Pouch, I'd like to converse with them about their experience with it.

Thanks! And good luck to everyone. I really feel for everyone!
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Hey I also have a j pouch since 2011. I currently am having perineal disease fissure/ fistula. At first they thought I had Crohn's not uc but a recent surgery/ failed attempt to fix the fistula showed active colitis with biopsy. My surgeon said I was left with too much colorectal tissue after total colectomy. They have started me back on humira and Imuran so far not working. I am also experiencing pretty severe muscle aching and fatigue. I think I may have Crohn's colitis and am making an appt. With uva's digestive health center for a better game plan.
 
Jajabinks said:
Does anyone here experience pulsating in legs and buttocks? Please tell me these aren't more fistulas. :( had an MRI with contrast done yesterday, what a scary experience.
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I have severe aching in my legs hips back and sometime shins and arms too. I have found that myalgia can be a manifestation of Crohn's/ colitis.
 
aimeey17 said:
Hey I also have a j pouch since 2011. I currently am having perineal disease fissure/ fistula. At first they thought I had Crohn's not uc but a recent surgery/ failed attempt to fix the fistula showed active colitis with biopsy. My surgeon said I was left with too much colorectal tissue after total colectomy. They have started me back on humira and Imuran so far not working. I am also experiencing pretty severe muscle aching and fatigue. I think I may have Crohn's colitis and am making an appt. With uva's digestive health center for a better game plan.
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I'm sorry to hear that. I also have a small amount of my colon that was healthy enough to keep when I had the rest of my colon removed. It's a "cuff" that connects my J Pouch to my rectum/anus. Every time I have had the abscessed area build up enough that I've had to go in for the outpatient draining, they have told me that area is inflammed, but that my pouch in general looks good. So, over the last decade, it has become apparent that the inflammed cuff is where the hole is and that is causing the fistula and abscess problems every couple of years. My Doc says Remicade is the best bet to address the inflammation in the cuff, help the fisutla to heal, and stop the build up of future abscesses.

It's hard to make a decision to do something like Remicade at the moment when I feel very healthy and good, but I know it's more of a proactive decision to stop future problems and possible future problems that could really affect my pouch. And I do hate it when the fistula/abscess problems flair up. So, I guess I've made up my mind to do it (although I HATE getting IVs because I am hard to stick in locations).

I've had my pouch for almost 12 years, and I have no real complaints so far. How do you feel about yours? If we get off on a tangent about J Pouches, feel free to PM me so we don't tie up a forum dedicated to fistulas, etc. HAHA!

I hope you feel better soon!
 
Jajabinks said:
Thanks for writing me. :( sometimes I feel I did this to myself for not taking better care of my diet. My doctor told me I could eat whatever I wanted and while in college last semester my diet wasn't so good. That's when my disease spread from terminal ileum to my colon. I flared really badly and I was under treated by my doctors. I'm dealing with so many emotions as of lately. I was never like this before. Also, are mortality rates higher for fistuli zing Crohns? My son needs me.
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Don't worry about that. I've had fistulizing crohns since inception in 2000. I'm living a VERY normal life. An MRI revealed that I had a bunch of fistulae in my sphincter area that don't seem to bother me. Fistulas can be very annoying to deal with and take forever to heal but I think that ultimately it isn't any worse than plain ole crohn's. I am actually healthier than at least 1/2 of the people that write on this board. Feel free to ask me anything.
 
God, it feels good to know that someone is able to proceed with life. I hope I am as lucky as you are seriously. :( I've been trying to graduate from college for so long (life happened then Crohns) and Im finally in my last two semesters. I cry everyday bc I fear what's to come and the fistulas seem like such an awful thing to have. What treatment are you using and what works for you? So far I've made a lot of diet changes n it's working well. Thank you for giving me a little hope....
 
aimeey17 said:
I have severe aching in my legs hips back and sometime shins and arms too. I have found that myalgia can be a manifestation of Crohn's/ colitis.
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Thanks, I thought I was going nuts n I've heard of fistulas traveling to the legs which scares me! Then the prednisone confuses me bc I don't know if its a symptom or not.
 
I eat a healthy diet, trying to get in my 4 food groups every day. . . When I was flaring I ate a lot of starchy foods, rice, white bread, pasta. Peeled fruit, cooked (not raw) veggies, etc.

I cannot recommend Remicade enough for closing my fistulas. I've developed antibodies to it though so I cannot use it. My 2nd choice is MM, but it isn't really possible for many Americans yet. A lot of people respond well to cipro/flagyl but I did not. They didn't seem to do anything at all.

I can give all the advice on treatment you'd like to hear but from reading these boards it seems that every single person reacts differently to everything (food and meds).

What I learned to do early on, though, is to not worry about all the crohnnie future stuff. You should really concentrate on not dwelling on it. There is absolutely nothing you can do by worrying about the "what if's" that you cannot control. You can just educate yourself, make sure you have a doctor you trust and feel comfortable with. Worrying only creates stress/depression which generally exasperates inflammation/symptoms.

*hugs*
 
Jajabinks said:
Thanks, I thought I was going nuts n I've heard of fistulas traveling to the legs which scares me! Then the prednisone confuses me bc I don't know if its a symptom or not.
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Same here I just got put back on humira and Imuran and I don't know what's what.
 
You are right Mish, we are all different. I'm trying my best to relax and not worry about the future.

I have a question regarding rectovaginal fistulas for the ladies on this forum, has it ever made your period difficult to come down? I've been spitting for two days which is unusual for me. It's not flowing the way it use to and I'm wondering what's going on since my fistula is higher up.
 
Jajabinks said:
You are right Mish, we are all different. I'm trying my best to relax and not worry about the future.

I have a question regarding rectovaginal fistulas for the ladies on this forum, has it ever made your period difficult to come down? I've been spitting for two days which is unusual for me. It's not flowing the way it use to and I'm wondering what's going on since my fistula is higher up.
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Mine was light but mine are usually light could be because of the rectovagional fistula or the fact that im anemic right now. Sorry I couldn't be more helpful.
 
hey Andy that's pretty much my exact story with a few minor differences my doctor actually said that the inflamation there is called cuffitis. however he said I was left with what he would consider too much cuff. I have had inflammation in that area on and off ever since I had my surgery. canasa suppositories were always helpful since its just a small area but mostly I just dealt with the discomfort and pain. I was on Remicade for years before my total colectomy and it worked great I was in remission but then after around three years my body built up antibodies towards it so it stopped working and I got sick. Then they tried humira but that didn't really work either. prednisone wasn't working I had what they called refractory colitis so I had the surgery. Recently I had a fissure in that area and then a
fistula my doctor recommended a pouchoscopy under anesthesia hoping that he could correct the fistula and fiissure while I was under. a biopsy of the cuff area showed active UC so now they're putting me back on the humira and imuran hoping that will help heal the fistula but I don't have much faith in that since medicine stop working for me a while back. Im waiting for an appointment to get a second opinion at University of Virginia's digestive health center. I'm hoping they'll have some fresh ideas. I am also a very hard stick but

those infusion nurses really know what they're doing.


Andy K said:
I'm sorry to hear that. I also have a small amount of my colon that was healthy enough to keep when I had the rest of my colon removed. It's a "cuff" that connects my J Pouch to my rectum/anus. Every time I have had the abscessed area build up enough that I've had to go in for the outpatient draining, they have told me that area is inflammed, but that my pouch in general looks good. So, over the last decade, it has become apparent that the inflammed cuff is where the hole is and that is causing the fistula and abscess problems every couple of years. My Doc says Remicade is the best bet to address the inflammation in the cuff, help the fisutla to heal, and stop the build up of future abscesses.

It's hard to make a decision to do something like Remicade at the moment when I feel very healthy and good, but I know it's more of a proactive decision to stop future problems and possible future problems that could really affect my pouch. And I do hate it when the fistula/abscess problems flair up. So, I guess I've made up my mind to do it (although I HATE getting IVs because I am hard to stick in locations).




I've had my pouch for almost 12 years, and I have no real complaints so far. How do you feel about yours? If we get off on a tangent about J Pouches, feel free to PM me so we don't tie up a forum dedicated to fistulas, etc. HAHA!

I hope you feel better soon!
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I would love to talk to you more about this I've never known anyone else with a J pouch, but I don't know how to private message someone I'm new to this website.




Andy K said:
I'm sorry to hear that. I also have a small amount of my colon that was healthy enough to keep when I had the rest of my colon removed. It's a "cuff" that connects my J Pouch to my rectum/anus. Every time I have had the abscessed area build up enough that I've had to go in for the outpatient draining, they have told me that area is inflammed, but that my pouch in general looks good. So, over the last decade, it has become apparent that the inflammed cuff is where the hole is and that is causing the fistula and abscess problems every couple of years. My Doc says Remicade is the best bet to address the inflammation in the cuff, help the fisutla to heal, and stop the build up of future abscesses.

It's hard to make a decision to do something like Remicade at the moment when I feel very healthy and good, but I know it's more of a proactive decision to stop future problems and possible future problems that could really affect my pouch. And I do hate it when the fistula/abscess problems flair up. So, I guess I've made up my mind to do it (although I HATE getting IVs because I am hard to stick in locations).

I've had my pouch for almost 12 years, and I have no real complaints so far. How do you feel about yours? If we get off on a tangent about J Pouches, feel free to PM me so we don't tie up a forum dedicated to fistulas, etc. HAHA!

I hope you feel better soon!
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Hi all, My husband had a colon resection and has a fistula from it and it never heals. He's had a tube via the stomach going to the colon to drain it and then they said it was healed and took it out. It came back 5 weeks later and fluid filled up and it burst through the incision in his stomach then. He then had an abdominal debredment (sp?) to suck all the fluid out of his stomach area. He then went to wound care and had it irrigated. So...that's done and now he's left with tiny fluid and pain, pain, and more pain when he eats. Do any of you have horrid pain when eating no matter what you eat? He's lost TONS of weight.
 
That sounds just awful! I did have a similar experience many years ago. Had multiple abscesses and fistulas but once I got through surgery I didn't have those complications. But before I was basically surviving on high protein ensure and white bread. Lost tons of weight very quickly and had never experienced so much pain. Almost like you could feel each step of digestion and the pain got worse with each moment. You might want to talk to Dr about hyperalamentation. That's where nutrition is per IV. It's not fun but would give his GI track rest while he heals. I had 10 years of remission but out of control again. Have a fistula, but not that bad this time thank goodness. Hang in there!
 
aimeey17 said:
I would love to talk to you more about this I've never known anyone else with a J pouch, but I don't know how to private message someone I'm new to this website.
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Aimeey, I PM'd you. Check the top of your browser page and you should be able to click on "private messages"by your name.
 
Jajabinks said:
I have a question regarding rectovaginal fistulas for the ladies on this forum, has it ever made your period difficult to come down? I've been spitting for two days which is unusual for me. It's not flowing the way it use to and I'm wondering what's going on since my fistula is higher up.
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It did not affect my period in any way that I was aware of.
 
It has never affected my period either. It can really be hard to deal with though. If you want to talk feel free to pm regarding the rv fistula
 
i have a question regarding my medication. what is the main difference between humira and remicade? is one stronger than the other? do they do different things? i am military, and my doctor put me on remicade, but that treatment really limits me as far as my job because i have to be in every 8 weeks to get a blood infusion, where as if i do the humira i can just give myself the shot and it shouldn't limit me as far as going to training exercises, deployments, or moving to a different duty station. so i want to switch to humira but i don't know if the doctor recommended remicade for a specific reason or if they are pretty much the same
 
Hi Devan

Remicade and Humira are both biologics that limit the effect of TNF-a, a trigger that can set off both crohns and uc. From what I understand, the difference as far as recommended therapies is mainly the fact that Remicade is better at closing fistulas and treating abscesses. I am on Humira because I do not have fistulating disease right now. Humira has done well at maintaining my crohns.
 
I started on the biologics from the psoriasis side (Enbrel, then Humira, then Stelara). My dermatologist is totally against Remicade. I guess the side effects vs. the psoriasis, in his mind, don't add up. For fistulas and abscesses, they would add up for me.
 
ok that makes sense. another quick question. could this disease have anything to do with my fatigue lately? i've been getting plenty of sleep, but i am just tired all the time and i don't know why. could it be from crohn's or iron deficiency?
 
devin.moyer said:
ok that makes sense. another quick question. could this disease have anything to do with my fatigue lately? i've been getting plenty of sleep, but i am just tired all the time and i don't know why. could it be from crohn's or iron deficiency?
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Absolutely. I don't know anyone with an IBD that doesn't have fatigue.
 
Good Day All,
Sorry to have to join this prestigious club.

three cheers for Perianal complications! :eek:

I have been secretly dealing with fissures and abscesses for years.
Just recently MRI with IV revealed multiple fistulas.
(but my GI referred to that test as MRE? anyone know?)

I have a question about a procedure, so I will start a new thread.
wishing you only well,
Walt

ps I hope you have the best day you can have...
:ghug:
 
Hi Walt,

I know what you mean as my GI made a resection sound like a trip to the Bahamas!!!

The MRI felt like you were being microwaved? There can be ghosting of images that are not really there as the initial report indicated the possibility of cancer.

Ciao, CARBUNCLE
 
Maxwelljax said:
That sounds just awful! I did have a similar experience many years ago. Had multiple abscesses and fistulas but once I got through surgery I didn't have those complications. But before I was basically surviving on high protein ensure and white bread. Lost tons of weight very quickly and had never experienced so much pain. Almost like you could feel each step of digestion and the pain got worse with each moment. You might want to talk to Dr about hyperalamentation. That's where nutrition is per IV. It's not fun but would give his GI track rest while he heals. I had 10 years of remission but out of control again. Have a fistula, but not that bad this time thank goodness. Hang in there!
Click to expand...

Hi, thank you for your reply. I am looking for any help at all :) How long did you have the IV for nutrition? Is this where you must stay in the hospital? I'm so glad you are doing better this time around!!!
 
About a month. At the same time was doing IV antibiotics. This was prior to surgery. I did it at home with IV nurse coming in to bring solutions over and check PICC line. They place those when IV will be more long term. Biggest hassle is checking blood sugar all the time but I did ok with it. Probably depends on what insurance will pay for but definitely worth look into.
 
Wow reading other folks stories have helped. I have dealing with fistulas for 5 years now . 4 years ago i had a colosmy to let them heal , 7 months later a reversal . They came back immediatly . At one time had 5 setons in place, none now. on and off flagyl to help with the infection. Now I started humira Last week first dose. Tough day I make it half way through the day and the pain takes a toll. I feel that a call to the doctor doesn't make a differance they just don't have a great solution. I don't do pain meds . Flagy makes me sick. 5 years ago when I tried the Humira I ended up spending 4 weeks in the hospital with a infection. I guess I'm feeling I need a new answer that doesn't exist.
 
Tedcin said:
Wow reading other folks stories have helped. I have dealing with fistulas for 5 years now . 4 years ago i had a colosmy to let them heal , 7 months later a reversal . They came back immediatly . At one time had 5 setons in place, none now. on and off flagyl to help with the infection. Now I started humira Last week first dose. Tough day I make it half way through the day and the pain takes a toll. I feel that a call to the doctor doesn't make a differance they just don't have a great solution. I don't do pain meds . Flagy makes me sick. 5 years ago when I tried the Humira I ended up spending 4 weeks in the hospital with a infection. I guess I'm feeling I need a new answer that doesn't exist.
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I hear ya, no fun! Ive seen on this site and then double checked and found out that remade is twice as effective as humira for closing fistulas. I was on it years ago for uc and my body build up resistance against it. now with fistulas they have also put me on humira and just recently a flagyl cipro combo. Im not sure where you are but I know my specific area of Hampton roads va doesnt have the best gi docs so im getting a second opinion at the uva center for digestive health hoping they'll have some newer better ideas.
 
I had a bad reaction to the remicade when it came out many years ago that's why I picked the humira .But I guess if the Humira doesn't do it I would try the remicade. I have taken my share of Flagyl . Yuk ! I have made trips back in the day to Boston ( 2 hours away) . Big fancy hospitals ! They told me my doctors were doing everything right and hang in there. A new set of eyes on heatlh issues is never a bad thing . I never wish someone luck on doctor visits I kind of go with the thought of I want a smart Dr not a lucky one ! I did a major diet change 7 months ago and I will say that it helped alot with My bathroom trips and most certainly with arthritis. I guess I would of given up donuts a long time ago if I new . have a great visit to UVA ! .
 
Tedcin, just curious what diet changes helped your arthritis. I've just had that come on for the first time in the last few weeks, and am trying to figure out what to do to help. I already don't eat much sugar. Thanks!
 
I Saw a ND doctor he recommended stopping all sugar gluton/wheat Yeast processed foods . I started it with the thought of, I eat heathly and it won't make a driffence. Wrong, it did the first 6 months I was very strick with it . It cut my bathoom trips down alot ! and my arthritis which was becoming a big issue drastically improved. It dose take some work. My friends do have fun when there here, my snack of choice is a buckwheat ployes with a banana and almond butter. I refer to it has a Banana Hotdog in a buckwheat bun with almond butter kechup !
 
Thanks Tedcin! That actually sounds pretty good, except calling it a banana hotdog makes it sound gross. :D (wow, that's a weird smiley face, but I'm going to go with it).
Thanks for the tip on buckwheat flour. I have sort of tried going gluten free, but ended up settling on gluten-light. The gluten free flours I've tried have really wrecked my reputation as a good baker. I am going to give buckwheat a try.
I've been feeling much better as far as digestion lately, but with this new arthritis symptom, I might have take more drastic measure. Also, despite cutting way back on sugar, I still eat honey, so I should probably cut that out too.
 
Almond four works on some stuff . And on the honey . I believe in keeping a few bad habits and honey in the tea works !
 
Oh good. I'm glad to hear that you're having luck with the arthritis even with honey. I can't hate on honey. i have bee hives!
 

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