Fistulas, Fissures and Abscesses Support Group

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I know some people have their fistulas heal when they start Remicade. It's a biological drug and very expensive. If I was in your shoes I'd avoid remicade and go for surgery. Biologics are not like going on a 10 course of antibiotics.

Could you go for a second opinion?
 
Yes, I do have a second opinion with another surgeon tomorrow morning. Thank you for the info on Remicade! I am looking into it now.
 
Hi Ann! He's a general and colorectal surgeon specializing in colon and rectal surgery but has had experience with umbilical fistulas.
 
I felt rushed into surgery for my anal fistulectomy in 1992, but I really DID need the surgery because I had the fistula that was draining for one year before I even went to a doctor. I just wore panty shields for a year to collect the drainage. I saw a Colon and Rectal surgeon and he told me it was an anal fistula. ( I did not even know what a fistula was and I did no research on it......SO STUPID OF ME. ) The only thing I regreted about my fistula surgery is the colon and rectal surgeon that I chose to do the surgery. ( Some old guy with bad bed-side manners. ) He cut me open pretty good ( I looked at it with a mirror ). But I had never had surgery down there so maybe that is what is was supposed to look like ?

Another surgery that I was rushed onto was a surgery to remove a renal cyst on my left kidney in 2007. After they took it out they had it tested and it was benign. I now have a renal cyst on my right kidney (1 cm as before ). But my Urologist is monitoring it with CT Scans and now an MRI this week. I told him I did not want to rush into surgery because back in 2007 the doctors rushed me into it.
In 2007 I was in the hospital for five days. And a nice size cut too, which cut through nerves and the area where the incision is is numb.

Ultimately the choice is yours. I am not a doctor and this is not medical advice, it is just sharing what I have already been through.

Keep in touch and tell us how it goes. : - )
 
Thank you for sharing your story, Ann! Yeah totally understand it's not medical advice, but it is great to just hear someone else's personal experience. This has come on so strong and suddenly, it's been a nightmare trying to figure out what the best course of action is, while still working a full time job.
 
I don't know how people go to jobs and school while having all of their symproms here ! I was let go from my job due to "workforce reduction" in 2009. Lived on a really great Severanew package, then a little bit of retirement money and finally Unemployment Benefits. By 2012 I had no health insurance and no income and no hope. In 2013 I won my SSD case. My case was not won by my Ulcerative Colitis issues alone
I suffer from Major Depression. Had a terrible, terrible mental health breakdown in 2007. Was back in psychiatric hospital last year. I feel worse mentally now than I ever have before ? My case gets reviewed every 3 years. I hope they don't determine that I can go back to work. I worry all the time. Sorry for writing so long. I know there is another section here for disabled / crohns. Have a Great Turkey Day. Hopefully there is SOMETHING that we can eat on Thursday ?
 
Mark21485 said:
Hi guys, I was wondering if you could help me. I have been diagnosed with an umbilical fistula that I have been showing symptons for, for about a month now. I had a CAT scan and fistulagram done (where they put catheter into my belly button). I do NOT have Crohn's or any other conditions and none of the doctors I've spoke to know what caused it.

What's been the most frustrating for me is I have found very little information online on umbilical fistulas specifically and am not sure what the best course of action is. It's also been very difficult to find any doctor that is actually familiar with umbilical fistulas (as opposed to anal) and many doctors I have called have never in their career operated on one. In fact, several have doubted I even had it until I explained the procedures I've had done. The doctor I found specializes in colon and rectal but he is the most experiecned I could find on umbilical fistulas.

It's approximatly 2.5 centimeters wide and is deep in my soft stomach tissue. Fortunately it's not communicating to other bowels or organs. My doctor is recommending I get surgery to completely remove it as soon as possible. He says even though surgery is commonly known as a last resort, there's no point in waiting long because it's not going to go away on its own. I have December off from work so it would give me a long recovery time to do it now.

I had a REALLY bad infection from it and actually passed a very large buildup of hardended discharge through my belly button, which was the most pain I've ever experienced. The doctors I've seen have never heard of that happening before. My infection is cleared up but I still have abdominal pain, my belly button is still painful and I can't run or bend without some pain.

I'm very confused on what should I do. Should I get the procedure right away? (I have a tentative date for next Monday, Dec 1 but I can cancel it) or should I just wait? My fear is getting another bad infection. The doctor said the worst case scenerio is another build up developing in my body but getting stuck or clogged and not being able to pass through my belly button. I've seen a regular doctor from a clinic and a general surgeon and both have said the only option is surgery.

However, I've seen on this board people waiting months and even years before surgery so I am very lost on what to do. Any advice would be helpful! I feel so helpless because this came out of nowhere, no one knows why it happened, and I can't really find any in depth info on this specific type of fistula to feel really educated to make an informed decision.

It seems like my choices are to get surgery to get it removed completely, or wait to see if the infection (which was excruciating pain) comes back and possibly worse?
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Hello. I am not familiar to umbilical fistulas, but I personally think you should go ahead with the surgery; as long as you are confident in the surgeon and his "abilities". Since yours is located on your abdomen I think it is less risky. The reason anal fistulas are often not operated on is because any cutting or excisions create a risk to damaging sphincter muscles. It is also a bad place to promote healing. I think your chances are favorable getting the procedure done. Hope this helps! Let me know what you think.
 
Hi everybody. Back in July, I noticed that my bowel movements were being painful. I thought it was maybe a fissure but the pain got worse and worse. Then one day, after a bowel movement, I noticed lots of blood in the toilet. The relief was immediate but I was draining blood constantly. I went to the ER where they told me that I had a perianal abscess. They said all it could do was let it drain. A month passed by and I was still draining. I found a colorectal surgeon who said that I had a fistula. He laid it open a bit to see of that would help with the drainage but it didn't really solve anything. 2 weeks later, I got fistulotomy surgery. It's been 2 weeks and the wound looks like it's healing. My question is, is it normal to have a lot of blood after a bowel movement? I've been keeping my stool soft from eating lots of fiber but it doesn't seem to be making a difference. Some days it bleeds and others it doesn't. I only have one bowel movement a day but I hope the bleeding of the wound will not affect it's healing.
 
Dario said:
Hi everybody. Back in July, I noticed that my bowel movements were being painful. I thought it was maybe a fissure but the pain got worse and worse. Then one day, after a bowel movement, I noticed lots of blood in the toilet. The relief was immediate but I was draining blood constantly. I went to the ER where they told me that I had a perianal abscess. They said all it could do was let it drain. A month passed by and I was still draining. I found a colorectal surgeon who said that I had a fistula. He laid it open a bit to see of that would help with the drainage but it didn't really solve anything. 2 weeks later, I got fistulotomy surgery. It's been 2 weeks and the wound looks like it's healing. My question is, is it normal to have a lot of blood after a bowel movement? I've been keeping my stool soft from eating lots of fiber but it doesn't seem to be making a difference. Some days it bleeds and others it doesn't. I only have one bowel movement a day but I hope the bleeding of the wound will not affect it's healing.

I do not know if it is necessarily normal, but I bleed 80% of the time I have a BM. The fistula is a tough thing to understand. Sometimes it seams to be healed and not much of a bother, other times it is like hell. Do you notice any clot-type blood that ever comes out?
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What does clot blood look like? I noticed it's a little dark red. After the bowel movement it stops bleeding. I just hope this doesn't affect the healing of the wound. I already bled two days straight. :(
 
Yes it is dark red and "goopy". I believe that comes from the fistula trying to heal and when you have a BM it causes some damage. It happens to me often. It is such a hard place to promote healing between sitting, going to the bathroom, and other activities. Does it bleed any other time besides bowel movements?
 
No just during a bowel movement. I've been eating a lot of fiber to keep my stool soft. I have a gauze with petroleum jelly on it everyday for drainage. The bleeding started two days ago. I just hope this won't be and everyday thing because I want it to heal. I'm going to start taking stool softeners to see if that works. I hope so. I really want this to go away. I haven't sat since July. :(
 
Yes, i understand. It literally is a pain in the ass! Mine only occurs during bowel movements as well. I wish I had advice, but it just seems like one of those things that takes time. I've had it for a year and a half and does not seem like it will change anytime soon.
 
Remicadee is ridiculously expensive. I'm on the highest dose possible now and it's more than 20,000.00 every 8 weeks. But Remi Start is a great program and I only pay about 60.00 each time so no complaint here. I had plugging surgery for my fistula and it didn't work. Another abscess formed and then there were 2. Remicadee has made a huge difference fir me. I would not advise surgery to anyone until they are able to come up with something that has a better success rate. There are supposed to be some trial procedures that are showing promise.
 
Yes, I agree. Remicade is very good for fistulizing Crohn's. I had a seton put in which really does not do anything for healing the wound. However, it has been a year and a half and I still have a fistula. There have not been many changes since the first couple treatments. Looks like I reached a plateau.
 
HELP! My fistula is still open and draining and but about an inch and a half away from the wound I have a finger tip size swelling in the skin. It is tender and sore. When I push on it is causes more drainage to come out of the current fistula. Has anyone had this problem? It happened yesterday prior to my primary care doctors appmt. And he pushed on it and saw the drainage too. He said it is a blind track? He gave me antibiotic cream. IDK what that means and I need to figure this out I have finals coming up.
 
Acrohn42...I had the same thing happen. It was another abscess and a track off of the original fistula. Had to be drained and had a seton in for about a month. It wasn't as deep as my other seton. Surgeon took it out leaving the original in and it hasn't returned.
 
Maxwell- Shit, I was praying it was not another abscess. Does it just happen from the fistula spreading? My fistula has not gotten blocked or stop draining so it sucks that it went down another path...Thank you for telling me. How bad was the pain?
 
The pain wasn't as bad as the original abscess. I had had my original fistula plugged and it didn't work. But it must have blocked it enough that a new track formed. Fistulas seem to be pretty unpredictable. If you are seeing a colorectal surgeon I would get to him on Monday. They may be able to drain in the office. Don't wait like I did and end up with another full on surgery. I now know the longer you wait the worse it gets. Learned the the hard way.
 
We need to stay on top of things,for sure.I also learned the hard way with undiagnosed fistulas.Definitely have it checked out achrohn42.
 
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Yes, thank you; I definitely do not want to wait. I waited for the first one and it was a horrible decision. My only problem is my surgeon is over 2 hours away and I have to go through getting referred and everything. Horrible timing too. Last week of classes then finals next week.
 
acrohn42 said:
Yes, thank you; I definitely do not want to wait. I waited for the first one and it was a horrible decision. My only problem is my surgeon is over 2 hours away and I have to go through getting referred and everything. Horrible timing too. Last week of classes then finals next week.
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Sorry to hear what you have to go through to have this properly taken care of.This disease is determined to make nothing simple for us.I saw my colorectal surgeon today and he explained to me the dangers of an untreated abscess.Left untreated fistulas can form from the abscess and go in different directions,damaging the muscles around the rectum.

I asked him to show me on a poster in his office where exactly my fistulas/setons are.I wasn't sure how deep they were,etc..

Hopefully your surgeons office will be able to work with your schedule.Especially considering your traveling distance.
 
I'm really glad there are groups like this! I'm 19 and was just diagnosed with crohns about a month ago so it helps to know I'm not alone.
 
dave13 said:
Sorry to hear what you have to go through to have this properly taken care of.This disease is determined to make nothing simple for us.I saw my colorectal surgeon today and he explained to me the dangers of an untreated abscess.Left untreated fistulas can form from the abscess and go in different directions,damaging the muscles around the rectum.

I asked him to show me on a poster in his office where exactly my fistulas/setons are.I wasn't sure how deep they were,etc..

Hopefully your surgeons office will be able to work with your schedule.Especially considering your traveling distance.
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Yes. I hate the wait game. I got in to see the surgeon friday afternoon. This is not asap, but I guess I have to deal with it. My GI put me on flagyl and cripro in the mean time. I've never used it before and not sure what it'll do to help. Hopefully I can last until friday.
 
acrohn42 said:
Yes. I hate the wait game. I got in to see the surgeon friday afternoon. This is not asap, but I guess I have to deal with it. My GI put me on flagyl and cripro in the mean time. I've never used it before and not sure what it'll do to help. Hopefully I can last until friday.
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Friday is not too long to wait.It would be nice if it was sooner,but at least it is this week.Hurry up and wait is something I think we all relate to.
 
Thanks Dave. Yea friday is good considering how busy of a hospital he works in and everything. I'll let you know how it goes. Fingers crossed it'll be fairly simple fix.
 
Saying that you still itch does not give me hope! I am still itchy when I sweat - the wound still looks a little open, 3 months post fistulatomy! Thought it would be headed by now!
 
My mood has totally changed in the last 1/2 hour. I felt an irritation "down there" yesterday and I reminded myself not to panic. Well, tonight I felt the irritation even more "down there" so I felt "down there" to see what it felt like. There really is something going on down there. I had an anal fistula in 1992 and I have had two rectal abscesses, one in 2002 and one in 2009. I would rather have two broken legs than have anything wrong with my anal / rectal area. The irritation is not in the immediate area on the anus or the rectum. I suffer from a lot of anxiety and I actually will see my Psychiatrist tomorrow. I have a tendency to go to the Emergency Room for some things that I can see my Primary Care Physician about. I go on vacation in 9 days ! This vacation means a lot to me. I hate doctors and nurses touching me "down there". I am very unhappy right now. I have been crying a lot lately anyhow because of some other things going on in my life. I cannot have any more stressors in my life. I am sick of being sick. I don't want to see any more doctors. I have been on 60 doctor appointments this year, and if you think I am exaggerating, I am not. I have them all written down. I need a break from all of those doctors. I just want to get some sleep. And I am so fatigued. I don't want to feel this crappy every single day.
 
Ann, you are not alone. I am new to this forum, but can tell that there are folks here who understand, including me. I agree most wholeheartedly about not wanting pain down there. Worst pain in my entire life, (and I've had two kids, several major accidents and broken about every bone in my body) and the long string of doctors, surgeons, etc who took their turns poking at it only made it worse. I felt like half the city had been in my business rooting around. At the time, the only thing keeping me going was finding some peacefulness in knowing there are treatments. I am glad we live in an age of modern medicine. Don't ignore this, take a deep breath and get it checked out. I will be praying for you tonight!

2
 
Elkpad: Thank you for your kind words. I have been sleeping very, very poorly lately. I have been tired and exhausted and fatigued. When I am tired I can burst into tears at any moment. I suffer from Major Depressive Disorder and Anxiety. I experienced a trigger recently. I have also been starting to isolate again. I am totally overwhelmed by the incredible amount of doctors visits I have had this year. I recently participated in two workshops at our local Women's Center. One was a Grief Workshop, so that was a very emotional class for me. My mom died last year and I have a lot of guilt about the things that happened in the months before her death. In the other workshop I had to do a "lifeline", which is like a timeline of my life. We had homework every week. There was a lot of thinking to do in the second workshop, maybe more than I could mentally handle. Saving the best for last......I excessively worry. One day I had a crying jag. When the crying jag was over I got a pen and paper. I wrote down all of the things I was worrying about. I wrote out 7 pages of worries ! I honestly want a break from everything. I know I cannot stay home all day and isolate, that is not healthy. But I just want some time away from all of the doctor appointments and all of the workshops and classes. Thanks for listening. I think I am going over to my depression website now, so that I can blog about my worries over there too ! Keep In Touch and have a great Holiday.
 
Question for everyone.... Had a fistualtomy 3 months ago. I don't have Crohn's. Just a small abscess that turned into a fistula.
Anyway it still itches, and it looks like it's still open. Is that normal?
If not what could be wrong?
 
I have a deep scar from an abscess from twenty two years ago. Would it hide some of my feces and also make it harder for me to clean myself? Thanks.
 
ronroush7 said:
I have a deep scar from an abscess from twenty two years ago. Would it hide some of my feces and also make it harder for me to clean myself? Thanks.
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Have you had trouble since the abscess? You have had this for twenty years,has it always troubled you? As far as cleaning my fistulas/setons I find a hand held shower head to work well.
 
I just wondered because sometimes I have littlest feces come out I wasn't expecting when I am cleaning and I have trouble getting completely clean.

2
 
Well looks like the doc wants to put another seton in. I am curious, my fistulas are lower and I have seen fistulotomy is pretty successful especially in that region. Anyone have advice? I know the big set back is damaging the muscle and all, but since it is low maybe it is a better shot?
 
Idk I had one fistulotomy at the beginning and it did not heal well and I ended up needed a seton. Maybe even though the fistula is lower it goes deeper so maybe the doctor thinks it might not heal properly?
 
I think it has a lot to do with how active your crohns is in the region. My surgeon wont even consider any option except setons because I have to much activity in the area for it to heal correctly. Well... he did suggest an ostomy as the other option but I am not quite there yet.
 
Thanks for the input. I may try to get a second opinion from another surgeon just to make sure. This type of thing- you want to try and pick the best approach but there are so many different procedures and they all have pros and many cons.
 
I just had my 19th surgery at Mayo clinic & happy to be alive. I had an abscess with sepsis & developed 2 fistulas after surgery & Dr's were debating if another surgery was needed. I ended going back on Cimzia & within 2 weeks the fistulas were gone. I had a draintube in for 92 days & when radiology would scan me, you could see the 2 fistula connections to my abscess that was being drained. They ended up finding cancer tumor too. I had my 1st 1 year remission in 15 years, went med free for that year & that was my biggest mistake ever cause my flare was the worst! Dr's say I'll never be able to be off my meds. My eye problems should've been my 1st clue, but had no idea that was possible. Uveitis, inflammation of the eye. I'm so thankful to be alive, I usually bounce back from surgery, but not this time! Think it was the sepsis, had to scrape my insides & bones.
 
Hi and welcome.

You've really had a rough go of it. I hope you start feeling better soon.

Sending you my support.
 
The Mad Bagger said:
I just had my 19th surgery at Mayo clinic & happy to be alive. I had an abscess with sepsis & developed 2 fistulas after surgery & Dr's were debating if another surgery was needed. I ended going back on Cimzia & within 2 weeks the fistulas were gone. I had a draintube in for 92 days & when radiology would scan me, you could see the 2 fistula connections to my abscess that was being drained. They ended up finding cancer tumor too. I had my 1st 1 year remission in 15 years, went med free for that year & that was my biggest mistake ever cause my flare was the worst! Dr's say I'll never be able to be off my meds. My eye problems should've been my 1st clue, but had no idea that was possible. Uveitis, inflammation of the eye. I'm so thankful to be alive, I usually bounce back from surgery, but not this time! Think it was the sepsis, had to scrape my insides & bones.
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Hey, I have very similar issues to you I had an ileostomy put in because of a Crohn's flare I had uveitis and I had mouth sores that made my whole face swollen. After my ileostomy surgery I developed the fistula to from an abscess to my stoma, and I've had 5 hospitalizations from infections from that so far they're trying to decide now if they have to do surgery for that fistula I also have a rectovaginal fistula that I've had for a year now and I'll have to do surgery to correct that before they reverse my illeostomy.
 
I have an ileostomy that I had done in 2010. If I have to get more intestine removed I will have a permanent feeding tube. I get mouth sores a lot too, right now I'm taking nexium to try to help & prevent another surgery cause of crohn's in my esophagus. One of my recent fistulas was vaginal, would pour pout of me after surgery, at first I thought it was something to do with my draintube. You're the 1st One I've met with eye issues too. Do you still? Mine is in my left eye & Dr's can't get it to improve even with eye meds, but I'm still having a flare up.
 
It's interesting to read that I'm not the only one who had Uveitis. Mine came before the doctors even knew what was going on as my first 3 anal ops were dealt with back in 06' by a small hospital who didn't think to explore what condition had generated it all in the first place. So it took me to become permanently half blind in one eye from Uveitis in 11' and a radical op followed by huge flare that put me in a wheel chair in 12' for a bigger, better hospital to diagnose me. I'm finding that Remicade keeps further flares and Uveitis at bay. I am blessed to be ticking along fairly ok right now. Your experiences sound really tough. Sending hugs and hopeful healing!
 
I was wondering if anyone here has had any abscesses on their ovaries or fallopian tubes. I'm 19 years old and my first Crohn's flair up I had one on both but the bigger one was on my right ovary/tube. It was too involved to remove it so they just drained it. I was wondering if anyone here has had these problems in the past and if you were able to have children the natural way. My doctor made it sound like the only way I would be able to do it would be with in vitro. I'm only 19 so I have plenty of time before I have kids but I'm just worried about how much it has affected all of the reproductive systems. If anyone has any input it would be greatly appreciated! Thank you!
 
I have two (or three) fistulas around my stoma. Do you get bubbly feeling from your fistulas? It kind of tickles and feels like air bubbles coming out fistulas. I do get poop and air out pf my fistulas but these past days is the first time i get this feeling..
 
After having 15 months of abscess drainage (daily dressing changes) finally a glimmer of hope after seeing a plastic surgeon. He wants me to lose 5 KG so he has some loose skin to work with and hopefully will surgically remove the two broken meshes, fix the hernia and he also wants to do a re-section as there is a lot of scar tissue from my original surgery. If he can't do a re-section, may have to have a colostomy which wouldn't be the end of the world. See him again on the 4th of February. All previous surgeries have resulted in infections, so hopefully this will work!
 
I just saw a big thread and web blog about using oregano oil to heal abscesses, fistulas, and fissures. Anyone have any experience with this? I just bought a bottle and figured what the hell and give it a try!
 
I have two (or three) fistulas around my stoma. Do you get bubbly feeling from your fistulas? It kind of tickles and feels like air bubbles coming out fistulas. I do get poop and air out pf my fistulas but these past days is the first time i get this feeling..
 
Jaano711 said:
The permanent ilieostomy is actually a relief. It is an awful to get your head around both physically and emotionally, but once I got to the point of having everything fail. I had seasons and fistulas splayed open, been on remicade that nearly killed me. The reaction saw me helicopter retrieved to a capital city and being in a coma - not a good thing for m kids and husband to go through!

Basically my rear end had sprouted so many fistulas it was more like a watering can (CRS description). I also had rectovaginal fistulas that were just down right depressing, and had started developing a labial abscess. As you can imagine both painful and embarrassing.

I had the surgery in August last year, and whilst the rear wound is being a little problematic, the Stoma itself has actually given me freedom and my life back. It may be somewhat different than before but it is much better. Everyday I accept the Stoma more. I am back at work, can actually go swimming, have an alcoholic beverage if I desire. I know longer scan for the toilet as soon as I enter a building. The only things I am yet to do is cycle as me rear wound is still being packed and draining.

So from here on in it is onwards and upwards. I now share my life with my new friend, my Stoma. She is lovingly revered to as Miss Piggy in our house.

Remember though, this is a worst case scenario and even so it is actually a huge relief.

Cheers
Jano
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Jano,
I agree that the ileostomy is favorable to the rectal vaginal fistulas and abscesses being aggrivated, I have now had 7 surgeries in 5 years to close mine, my ileostomy is hopefully still temporary. It's been a year now on January 15th since the ileostomy surgery and though still emotionally awkward, I'm back to work full time, able to have occasional intimacy and near figuring out how to best disguise with clothing. I am climbing out of the darkness having an Ileostomy drowns you in.

My new friend also has a name "Todd" as he sometimes sounds like a toad. Most people do not know what i'm talking about when i say to "have to deal with Todd" "Todd's being an asshole today" "Todd is angry at me" Todd doesn't like Sesame Seeds"

Didn't think i would ever be able to be this way about my body change, but it seems to make things easier for me and others if the conversations are a little lighter. Together, Todd and I are adjusting to our new life together.

Best of health to you and all others like us. xo:hug:
 
Embarassing question, and I'm not sure this is where to post ... but those of you with recto-vaginal fistulas/setons, are marital relations possible?

My fistula exits just north of the vag. opening (it does not actually exit out of the vagina - more of a "perineal" fistula, although it's technically termed an RV fistula, per my CRS), which is of course where the seton exits. I've been fearful of "trying", due to possibly pulling/tearing of the fistula exit. My CRS said sex will NOT hurt the fistula, but yeah, will it hurt the exterior opening by pulling the seton?

I don't have many problems with the fistula and seton outside of this issue. I do get achiness from time to time at the exit and do have to be careful of skin breakdown, but otherwise am doing OK with it.

Any thoughts/experience with this issue? Thanks.
 
Not a fun topic but you are in the right place. I have an rv fistula although no seton in it now, I did have one in there for a while. We were able to still have relations - it never really hurt or anything. I was alway a bit embarrassed about it but it was not a problem. Feel free to pm me if you need to talk.
 
Jaano711 said:
Hearing you all loud and clear. My fistulas and abscesses got so bad that I have recently had my rectum and anus removed and have a permanent colostomy. So far all ok except for one abscess in my psoas region that keeps returning and is stopping the healing of my butt wound.

None of the medications worked and I had an anaphylactic reaction to infliximab( supposed to be best for fistulas) so I had no option as my CRS put it ' that is one wrecked rectum'. Have to say I don't miss being in tears with every BM and having up to 30 BM's a day.

I hate fistulising Crohns!!!
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This sounds like me, but I have an ileostomy & had an allergic reaction to Remicade. It has made my life so much better :)
 
MrsW said:
Hi everyone, I'm new to this forum & group. I joined today after having unsuccessful surgery for a rectovaginal fistula a week ago & feeling pretty upset with the whole damn Crohns misery. I have reading alot of posts since joining & realise I'm not alone in this world. Would luv to talk to other women in my situation. X
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It is very depressing, and depression should not be ignored, I have had 7 surgeries in 5 years to close the same fistula, I'm now taking a break, got an ileostomy in jan of 2014 and it has improved my lifestyle - i eat and drink whatever I want now, no embarrassing odors leaks or noise from the vaginal area - I think a trade up. I like you was/am feeling pretty upset - the rollercoaster ride is long - but there are success stories here and I keep searching for them hoping to find my answer.

I wish you health and happiness, two things very hard to maintain with this awful condition. don't give up hope

"Have you the will, your will makes your way" xo
 
:sign0085: I am new, and have some basic questions about fistulas. I was told i have developed some between the time of my 1st colonoscopy (2012) and now, how do they form and what exactly are they?

I do not know where they are located, and after the colonoscopy a month ago, he said everything looked fine, but got biopsy back and then told me they had formed. Can they come in different sizes, and shouldn't he have seen them during the test? I am just confused and my medicine is not working; almost making my stomach aches, migraines, night sweats worse.
 
Hi apopolizio,

I'dpast some links for you but I can't do it on my device.

Basically fistulas occur when a tract develops from the intestine to a hollow organ or the outside world. Mine always started as an adscess. This tract results in bowel contents and puss flowing through the access.

Fistulas, unless big, can be hard to detect by sight. Usually detected through diagnostic imaging.
 
Dave, thanks for answering! I just am confused and trying to understand what's going on in my gut. What can they do for fistulas? I am on Pentasa only right now and my stomach is feeling more pain now.
 
Some people on remicade have theirs heal. Depending on where they are surgery is sometimes an option or a Seton is places to keep it open and prevent further abscesses.
 
Hi all, I had a fistulatomy 4 months ago... All is healing but now I have had a fissure for 2 weeks! I thought it would go away by now. It only hurt s after a BM. I have been taking sitz baths and coconut oil and Advil. How long should they last and any other remedies?
 
Hi Harper05. I did have a fissure with my first fistula, have had 2. The fissure did eventually heal. Not the fistula though unfortunately so I'm glad to hear you are healing. If you have Crohns be very careful taking Advil or any other NSAID. I take Alieve from time to time because it works better than anything but it's really damaging for those with Crohns.
 
Hi, thanks I do not have Crohn's. Just had an abscess that turned to a fistula and now a fissure :/. Bad luck in that area I guess. I have been drinking a ton of water and doing what I can but its been like 2.5 weeks... I just want it gone!
 
Don't blame you...I know it's painful. Hang in there. Sounds like you have an excellent chance of recovering from this even if it does take some time.
 
apopolizio said:
Dave, thanks for answering! I just am confused and trying to understand what's going on in my gut. What can they do for fistulas? I am on Pentasa only right now and my stomach is feeling more pain now.
Click to expand...

Remicade/Humira are often good for fistulas. I actually travel up to Rochester to see a surgeon at Strong. His name is Rabih Salloum- he is good and I suggest him if you have any questions about surgery. Or see Bastian Domajnko- hes another Colorectal surgeon. Both good guys. Best of luck.
 
Hi all- question... I don't hve Crohn's. I had an abscess.. Surgery and then got a fistula.. Had surgery on that 5 months ago. I now believe I have a fistula it hurts during a BM and for about 10 minutes after and then the pain in gone. I wasn't going to go to the doctor but now i just noticed a small whitish bump/tag down in that region where it hurts after a BM. I am praying it's not another abscess.. I mean honestly..: what are the chances of getting an abscess again.
Any suggestions on what it is?
I am going to call my doctor... Again... Tomorrow
 
I've had my fistula since 2006 and it wont heal... they say i have at least 8 inside of my anus.... i need a good doctor to help me through this.....:poo:
 
Since 2006? Omg....I have had mine almost 6 weeks and it's awful. Should I change anything in my diet? I need it to heal....and I am losing hope
 
Everyone is talking about fistulas right now. I had an anal fistulectomy in 1992 and it did not come back and no fissures.

But I have had 2 rectal abscess surgeries ....2002 and 2009.

Some irritation is now coming from that same area. I always get freaked out by any kind if sensation in my anal area because of the fistulectomy and the abscesses. I hate having a doctor touch that area. I had a bad experience with the fistulectomy doctor. But even having the nurse remove the packing from a precious abscess really bothered me.

I hope this irritation I am feeling now is not the beginning of a rectal abscess. My first one grew and was terribly painful because I did not know what it was in the beginning. When I felt the second abscess coming along a few years later I just actually went to the ER and they admitted me and did the surgery the next day....I knew that it was an abscess based on my previous experience. So no horrifying pain the second time around.

Pray that I don't have a rectal abscess. I suffer from anxiety and depression and I don't need any more problems in my life right now.

Thanks for listening.
 
I was diagnosed with crohns in 2007 and was okay for a bit. In 2011 I had an abdominal abscess and from that had to have an ileostomy. Thankfully I was able to have it reversed only a few months later and had been feeling great since. I never had any fistulas until this past September.
I went in for my regular colonoscopy and after that I started having a terrible pain near my tailbone. I had multiple tests done and they finally figured out it was a peri-anal abscess about the size of a baseball. They drained the abscess in September and I have since had an open wound. It turned into a fistula about a month ago I had a fistulotomy as well as a seton placement. I just met with my surgeon again and he said it doesn't seem like it's healing well and I will most likely have it for life unless we do something else. I am 27 and couldn't imagine having this for the rest of my life.
The only other option at this point is to have another surgery for an ileostomy. He said he has seen results of patients fistulas healing with this. Has anyone had any success?
I've just been feeling so crappy lately and have been in bad pain since September. I started on entyvio in November and thought that would help but it hasn't.
 
Hi all,been awhile since I've checked in. Saw my colorectal surgeon this week,seven months since the fistulotomy and seton placement. She was happy with how I was progressing and also reminded me it was a lengthy process. No kidding,doc. I am fortunate there are no new abscesses and the fistula without setons are doing o.k..

We discussed drainage,smell and all the good stuff. I asked about stopping Remicade and was given a resounding NO! I was told the removal will be similar to the placement surgery. One seton at a time when I am ready,with six months to a year to see the fistula does not return and I heal before the next one is removed. So a long haul.

I was told seven months ago I may need a colostomy. I am now being told the setons are doing there job and the talk of 'when' setons are removed and not 'if' is encouraging. That is progress.

I have to say I feel fortunate.
 
Ill share my update too, as its been a while as well. I had my 3 setons removed in July of last year and had advancement flap surgery as well as a fistulotomy. They were both a success. Kind of expected to go back to "normal" but here I am almost a year later still having to have gauze between my cheeks daily because of irritation and terrified that any pain I feel that its going to come back. It sucks. I know this is a good problem to have compared to the alternative, but its not what I expected. We are trying to get pregnant and I know I will need a c section, which I never wanted. I guess its the best of a bad situation, but still a bummer. It has changed my attitude though, at least that is positive. Whenever Im having a bad day I just tell myself, well this time last year…. and then I am thankful for where I am at now. Maybe more time will completely heal it, we will see.
 
Just had a c ton put in Jan 15. This past Thursady brought into have a infected abscess cut out and drained! Feeling less pain but the goal is to have me on Methotrxate and double dose of Humira. This will be done to fight Fistulas and Abscess that keep coming back. Anyone on these two drugs together like to hear from you. Quick story just before I go under a :blush: young Doctor comes over to say Hi she says to me if they found it was Crohn's first not UC they would not of gave me the pouch! So what would have they done then?
 
That's great news Dave! I'm still being told I'm stuck with the seton for the long term. It rarely drains and doesn't usually bother me. But then there are those times it feels like I'm sitting on a hot coal. Still much better than before so I can't complain too much.
 
Hi all :)
I am relatively new here and would like to hear your views.
I am due to have the Biolift op to hopefully repair my anal fistula! Has anyone had this procedure done? I have had 13 fistula and abscess surgeries in the last 22 months and i currently have a draining seton in.
 
I just had a fistulotomy yesterday to resolve my fistula. I had a draining seton put in last October, and while it worked wonders at the time, it can get irritating and uncomfortable. So, after a colonoscopy and several scans the gastro doc and Colo-rectal surgeon say it doesn't appear I have any active Crohn's for now timing was good to try and fix this with a one and done attitude. I was a bit nervous about pain,but so far have little to none to speak of, thank goodness. I'm sure that my first movement will be an experience, but have been trying to keep enough pain meds on board to minimize it.

2
 
kelly1 said:
Hi all :)
I am relatively new here and would like to hear your views.
I am due to have the Biolift op to hopefully repair my anal fistula! Has anyone had this procedure done? I have had 13 fistula and abscess surgeries in the last 22 months and i currently have a draining seton in.
Click to expand...

Perhaps if you start a thread with Biolift operation in the title it may get more hits versus being in the support group section. Just a suggestion.
 
Currently have some problems with Fissure's / Fistula & Hemmorroids again. Sitz bathing is soothing but honestly @ times I think this is never ending. So sore & painful, I worry this is going to end up with me having a colostomy & I'm not sure I can face it. I did speak to one of the Specialist Nurses about it on the phone & the 1st thing she said was you need to talk to a Stoma Nurse. I hung up @ that point.
I feel like I'm gradually being worn down by it & the constant worry, my belly is relatively ok atm but down below its a different matter.
Rgds
Grant
 
kelly1 said:
Hi all :)
I am relatively new here and would like to hear your views.
I am due to have the Biolift op to hopefully repair my anal fistula! Has anyone had this procedure done? I have had 13 fistula and abscess surgeries in the last 22 months and i currently have a draining seton in.
Click to expand...

Welcome.:rosette1::rosette1:
 
I had great pain in my anal area in 1991. Had no idea what it was. Looked at it in the mirror and popped the blister-like thing. The smell of the liquid that came out of it was horrible. Here comes my stupid part, I did not go to a doctor until 1992. I wore panty shields for several months to collect the drainage, it was not heavy drainage as far as I remember. I don't know why I did not go to the doctor right away, maybe because of my mediocre health insurance coverage or the fact that when I was younger I did not panic about my health like I do now. I had so little wrong with my health back then.....bursitis in my elbow, tonsillitis. Once I did have the operation I had to pay 20 percent of the cost which was $1,000.00 and that was a lot of money to me back then.

Okay, so I had an anal ( peri-anal ? ) fistulectomy in 1992 when I was 32 years old. I saw a colon/rectal surgeon for an examination. He scheduled me for surgery. I had the surgery. I asked no questions about the fistula or anything, I did no reading or research. I was ignorant. I was not even properly diagnosed with Ulcerative Colitis by a Gastroenterologist until 2006 after a colonoscopy. I HAD seen some Internal medicine doctor in the late 1990's who did a Lower GI and a Flexible Sigmoidiscopy, but no Colonoscopy. I gave up with the Internal medicine guy and did not go to anymore tests until 2006.

I had the operation by the first colon/rectal surgeon I visited. I should have seen more doctors because I had an uncomfortable experience during my last examination during my physical examination before my surgery. It involved a needle and looking for pus pockets in my anal area ( as far as I could remember.) I don't recall any numbing of the needle insertion area and I sobbed in my vehicle for a long rime on the parking lot after that examination. I had been caused great pain. To this day I am fearful and scared every time a healthcare professional wants to examine or operate in that area ( including packing and removing the packing).

My fistula never came back, I am very lucky. But I had 2 rectal abscess surgeries later on in the 2000's. I still had no idea that rectal abscesses and fistulas were related to the Ulcerative Colitis.....no doctor ever told me this ! I have learned more here on this website than from any healthcare professional.

After my fistulectomy I was at home and decided to look at the surgery area on a hand held mirror. I was horrified at the sight! Probably not a good idea to look at it ! I did the sitz baths and was off work and did a follow up with the doc. Then never saw that doc again.I have had other doctors look at my anal area in the hospital and one doctor said I had a lot of scaring back there.

Sorry thIs story is so long today. What reminded me of my surgery is this.....last night on a YouTube I watched a 20 minute video of an anal fistula plug being put on. It was a horrific thing to watch such an operation knowing that the patient was being caused so much trauma on such a sensitive area. I don't think I will be watching any more of those videos soon. I have also seen videos of rectal abscess surgeries. Ahhhhhhh !

Have a good week.
 
Has been 12 days now since fistulotomy. Honestly I haven't had a great deal of pain and around day seven actually felt normal for the first time in years. But, I had a stressful personal issue come up and now I fear I'm experiencing a flare. Started to get some drainage, etc. Pain in the area has been intermittent now and I almost feel like I have a lump down there at surgery site. Ill be going in to have the surgeon take a look, and hope its just normal swelling or something. These issues are so wearing and have such terrible impact on lifestyle!
 
Looking for advice or information from this support group. Here's my story:

I am fairly new to my diagnosis, but feel like I got thrown right in with everything. I was 'officially' diagnosed with Crohn's disease in October of 2014...but turns out I have probably had it for three or so years. I had several flares over the years and experienced what I know now is ileus multiple times, but was never properly diagnosed or referred to a gastroenterologist. Fast forward to October where I went to the ER for severe abdominal pain that had been waxing and waning for three weeks. I was diagnosed with a small bowel obstruction and sent to a gastroenterologist. After an NG tube and every test known to man kind, I was diagnosed with Crohn's and a terminal ileum stricture. The doctor tried medical management first, with prednisone and humira, but I continued to experience ileus every 1-2 weeks. So I was referred to a surgeon.

In February 2015, I had an ileocecectomy, where they removed my terminal ileum, ileocecal valve, and first part of my cecum. Here is where I need help from you guys....my surgery was supposed to be fairly 'routine' and 'easy' according to the surgeon. Well, when I woke up I was told otherwise. She started laprascopically, and then had to cut me all the way open due to chronic scar tissue and other stuff. She also found a small fistula and a chronic abscess attached to my uterus and rectum. I woke up with a large drain in my belly and multiple incisions.

Here's the deal....now what? I feel better than I have in years, thanks to Humira and no longer having a large strictured area of intestines. But what about this abscess and fistula that she found? Do I need to worry that they will return? What are the symptoms to watch for with that? I feel like those things were just an after-thought, but while I was doing some research I found that they can be very devastating problems. I also have had some intermittent anal pain (mostly while going to the bathroom) recently and there is a small red area...worried about a possible hemorrhoid or an anal fistula...or it could be nothing. Now I'm paranoid!!! :facepalm: What are things to watch for or symptoms I should be aware of? Just feeling a little uninformed about this issue...

Thanks in advance!
 
hi all - I need some quick tips....
here is a backround in a nutshell. I don't have Crohn's. I had an abscess last year... turned fistula. had surgery on both.. 3 months later I got a fissure.. after taking miralax and 7 weeks the fissure is gone.. I just stopped taking the miralax and that area is so itchy!! any tips on what to put down there, or things to eat? I don't want to have to take miralax forever.. I am taking stool softners but still itchy! :) tips/advice please!!!!!
 
I take 2 to 3 dried pitted prunes followed by a cup of water before going to bed. It works for me as a stool softener. Zitz bath with epsom salt as hot as I can handle for the itch. My last resort is calmoseptine. Its cold and soothing, really a butt nirvana, I just do not use it so often because I have 2 setons. It kind of sticks to the seton and makes it harder to clean.
 
Thank you... Is it normal to get sore - it's like a muscle sorenes (not like anything is there) and itchy after a BM if your not taking Miralax? I hate having butt problems!!!!
 
Hi! I am brand new to the forum and so glad to have found some support! This is such an isolating problem and very difficult to talk about with friends and family. I just quit my job at a preschool today. I had taken too many days off and my boss was sick of my absences. I tried to explain by saying I have a tear in my intestinal tract. I think she was sympathetic but not entirely understanding.

I have struggled with fissures my whole life. No doc has ever tested me for Crohn's or UC (my uncle has UC) and my dad has IBS. I have never had a full scope because the clean out/prep would be too painful. Had a failed LIS surgery while overseas in 2010. Basically never healed that incision. Tried botox 1.5 years ago. Now the thing has grown a small fistula.

CRS says surgery is my only option. He wants to lay it all open and perform a proper LIS. I am scared crapless;)

Any advice? Do I go in for another surgery? What's the recovery like for a simple fistula near the anus and an LIS surgery at the same time. THANK YOU!!
 
ready: I am sorry I cannot answer your question, but there are plenty of folks here that have a lot of knowledge about it. Hope you feel better soon.
 
eden: wow, so much going on with you so quickly ! In the late 1990's I had a lower GI and Flexible Sigmoidoscopy. I think the internal medicine doctors at that time thought I just had IBS or something. Well, I had my first colonoscopy in 2006 and was officially diagnosed with UC. In the late 1990's they never did a colonoscopy and I did not know anything about colonoscopies at that time. I am much smarter now and more proactive when it comes to my health. If I don't like a doctor, I get another one. I usually know if I feel comfortable with a doctor during the first visit. Some of them care and some just don't.


Hope your health improves soon.
 

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