Fistulas, Fissures and Abscesses Support Group

Crohn's Disease Forum

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Yep my doc understands that I know my body,I live 150 miles away from him tho,I'm on flucloxacillin pills 4 times day,I've got specialist on June 14th so hopefully be sorted quick smart.
 
Yep my doc understands that I know my body,I live 150 miles away from him tho,I'm on flucloxacillin pills 4 times day,Do your fistulas just turn up or do you think there might be is a reason why they flare.
 
So I think my issues last week were the pre cursor to my fistulas acting up again because they have been very active for the past couple of days. At least the are draining so it's relieving some of the pressure. Cursed things. Not sure if this means the Remicade stopped working or if it's maybe just a rough patch.
 
Long time Crohns and Fistula sufferer. I had a fissure on Christmas break in 96. Had Surgery January of 97. Then got really sick vomiting, diarrhea, fatigue, pain, weight loss. Took about 3 months and a Dr change to finally get a scope done. Tried every pill, and was on Prednisone for over a year. I was 14 about 5'8 and wore size 13 shoes. My wight went from 200 down to 150 back up to 240 all within about a year. Also developed perianal fistulas during this time. Finally went to the Childrens hospitol in Omaha Nebraska and found an excellent Pediatric Crohns Doctor. My GI in my hometown was horrible just kept giving me prednisone and pain killers and told me to toughen up and go to school. Easy for you too say Dr you dont have extra holes in your rectum just your head fits there haha. Sorry if that offends anyone just a horrible uncaring Dr. We told him we were going to Childrens Hospitol and he said you'll be back. NEVER EVER had to see thst jerk again.
Anyways at the Childrens Hospitol excellent Dr and nurses we tried a few different meds. Then they said we have this new medicine its supposed to be good for fistulas its called Remicade this was early 98. I believe I was the 2nd adolescent to try this it was fresh out of clinical trials. It was a miracle. Within the 1st 6 months my Crohns quieted down and best of all the fistulas finally healed. My Dr asked if I would let him take pictures for a medical journal/ book. Myself and my parents ok and so I guess its in some medical journal. When I was 18 I switched to a adult Dr at University of Nebraska. Continued the Remicade for the next 10 years. had a few small flares changed dosage and frequency. I was also on Methotrexate shots for awhile and 6MP. Abuout 4 years ago the anal abscesses and fistulas returned. Tryed a few different meds and increased Remicade to no avail.

Switched over to Humira/ 6MP about 3 years ago. Lost my full time job of 8 years in Jan of 2011. Too many absences and exhausted FMLA leave. I stayed on Cobra insurance and even though I was still struggling I found another job about 6 months later. That jobs insurance was crappy. I could only afford 2 shots of Humira a month I was on every week. Was a 80/20 copay and even with assitance would have been $600 a month, uggh. I ended up needing surgery in DEc of 2011 for a anal abscess caused by fistulas. I could not return to work. I had to move back to my parents house in Jan of 2012. I also filled for SSD in Jan 2012. I basicilly just gave up trying to work.

In Mar of 2012 I had to have emergency surgery for a tear in my small intestines caused by a fistula formation. At the same time I choose to have a temporary colostomy to heal the peranal disease and remove the fistulas. It worked but upon reversal in Dec of 2012 the fistulas returned with a vengeance. The humira has done nothing for my peranal disease. I have had numerous bouts of Cipro and Flagyl , nothing seems to work. I wanted to quit my 6mp and try something else my GI Dr didnt agree. I now go to the University of Iowa Hospitol as im on Medicare and treatment there is free. I like my Dr and Hospitol but its a 300 mile trip one way. I go back in July to see my GI Dr and hope to try something new. Im hoping for no surgery,but not sure as meds dont seem to be treating the perianal disease

I have lots of pain, fatigue, Diarrhea, sinus, and joint problems. Im a 30 year old male, somedays I feel 80. On a good note i had my hearing for SSD and my lawer said we won, nothing offical yet. I mainly just lay in bed im affraid to leave the house in case I have an accident, so embarrassing. My weight fluctuates alot in April I was 230 now im 245, for years I was 260. Im 6'2 so 260 is over weight but not morbidly so. I want to go back to school, but cant really sit for long and the pain killers make me feel dingy. If you read this whole book thank you this disease can be horrible I try to stay positive and live one day at a time. Hugs to all with this crappy disease
 
Does any one know if Methotrexate (injections) help in healing fistulas?? I am starting Thursday and am not looking forward to it. Dr also wasn't convincing that he knew if it did or not.

Carlee
 
Carlee said:
Does any one know if Methotrexate (injections) help in healing fistulas?? I am starting Thursday and am not looking forward to it. Dr also wasn't convincing that he knew if it did or not.

Carlee
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I'm very far from an expert on this, but I believe that Methotrexate is often used instead of 6MP, in addition to other medications. My daughter is currently on Remicade which is helping, but not getting rid of a stubborn fistula/abscess she has. Her doc is starting the 6mp to hopefully give her the boost she needs to get past this. I believe I've read that they use Methotrexate in the same way. Hope that helps :)
 
How long do you stay out of the pool after a drainage or seton is placed in? I'm not sure what they will do for me till I go in the operating room.

How long have most of you had your seton or drain in? What's the average? For a perianal abscess.
 
One seton was in for a couple months, the other is 1 year,10 months and counting

I have heard conflicting things on pool use. Some say you are ok as long as you are not actively draining others say that the chlorine kills everything so don't worry at all.

I just don't go in.
 
nogutsnoglory said:
How long do you stay out of the pool after a drainage or seton is placed in? I'm not sure what they will do for me till I go in the operating room.

How long have most of you had your seton or drain in? What's the average? For a perianal abscess.
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I had my setons for six months. I avoided the pool the entire time. Fistulas still straining, still avoiding the pool.
 
I had my seton in for a little over a year. I didn't avoid the pool, mainly because my CRS and GI said it was fine to swim with it in. If it was hurting or draining a lot, then I would not swim.
 
nogutsnoglory said:
How long do you stay out of the pool after a drainage or seton is placed in? I'm not sure what they will do for me till I go in the operating room.

How long have most of you had your seton or drain in? What's the average? For a perianal abscess.
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I currently have two setons in place, first one since Jul'12 and second since Dec'12. In December I was booked to go out to the Great Barrier Reef, I asked the Colorectal surgeon if it was okay to go swimming/snorkeling? You could see he didn't want to give me a definate answer... he ended off by saying: "I'm not saying it's a good idea but!" - what kind of answer is that...? In the end I went swimming/snorkelling etc. I actually applied a water proof plaster over the setons/wound area of course it wasn't that effective but it's the thought that counts :ylol:

I was told by the Colorectal surgeon last week that I now have 3 fistulae and they are complex. He doesn't have a solution for me yet. I asked him about a 'fistula plug' - he responded that they don't use those here in Australia :ywow: I've had a fistula plug (for a different site) done in the past in Wellington, NZ and that worked fine. So now I wait 2 months until I next see the surgeon and hopefully he will have a solution...
 
I have had a rectal-vaginal fistula for awhile now but my Gync has told me it was small. Sometimes I pass gas out of my vagina and see diarrhea in small amounts mainly just on toilet paper in this area. However, last night when my husband was giving me an enema, because I am having a hard time with narrowing and getting stool or food to pass, the liquid of the enema went straight up my rectum and he said that he saw some of it come out of my vagina. I also felt it. I have never had any surgeries or setons placed. I am on Humira but don't think it is working much (been on Humira off and on for 5 or more yrs) and now 6 MP. My pain is more in my belly button region but I do feel discomfort down there. Any suggestions?
 
I have one too... I have too much rectal disease activity for them to consider surgical options for getting rid of it but there are some ... I have not heard a whole lot of success stories.

Have you seen a colorectal surgeon at all for the fustula? You may want to talk to either a colorectal surgeon or a gyne surgeon. Iin my opinion they are far more knowledgable then a regular gyne or gi. At least that has been my experience.

I am sorry you are going through this. I hope you find the answers you are seeking.
 
I developed a bladder to bowel fistula while on Humira; now I'm on Remicade once again, but it seems slow to heal even though it's very small. I have to stay on antibiotics or else I get a UTI within a week.
 
jbpharmd said:
I have had a rectal-vaginal fistula for awhile now but my Gync has told me it was small. Sometimes I pass gas out of my vagina and see diarrhea in small amounts mainly just on toilet paper in this area. However, last night when my husband was giving me an enema, because I am having a hard time with narrowing and getting stool or food to pass, the liquid of the enema went straight up my rectum and he said that he saw some of it come out of my vagina. I also felt it. I have never had any surgeries or setons placed. I am on Humira but don't think it is working much (been on Humira off and on for 5 or more yrs) and now 6 MP. My pain is more in my belly button region but I do feel discomfort down there. Any suggestions?
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Have you tried Remicade? It did wonder for my fistula.
 
lgpcarter said:
Have you tried Remicade? It did wonder for my fistula.
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I have already used Remicade for years but this was back in 2002- about 2006. I have already re challenged med once. Don't know if it would work again or not. It stopped working before. Thank you for suggestion.
 
Sailorluna said:
I have one too... I have too much rectal disease activity for them to consider surgical options for getting rid of it but there are some ... I have not heard a whole lot of success stories.

Have you seen a colorectal surgeon at all for the fustula? You may want to talk to either a colorectal surgeon or a gyne surgeon. Iin my opinion they are far more knowledgable then a regular gyne or gi. At least that has been my experience.

I am sorry you are going through this. I hope you find the answers you are seeking.
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How do you cope with yours? Do you notice pain from fistula or rectal disease in general? I don't think I have much pain with fistula just vaginal discomfort. My Gync gave me Premarin cream to use as needed and a steroidal/ anti fungal cream as needed. I have problems with rectal fullness and not fully being able to evaluate. This also comes from sphincter problems but the fullness is worse and I was wondering if fistula could be cause? I have also had proctitis.
 
I have two fistula the rectal one sometimes hurts and gets irritated when I have diarrhea. It bleeds too. the vaginal one never hurts, The gas and occasional fecal matter are the only real symptoms from that one. I also have a rectal stricture. I have not really had rectal pain or fullness, I am not sure what causes that.

As for coping, well there is not much that can be done. I had a seton there for a couple months but it did not make a difference. I wear a pantyliner all the time just in case. My doc told me that if you are leaking you can use a low absorbency tampon. I am a bit nervous about that though, worried about infection.
 
Sailorluna said:
I have two fistula the rectal one sometimes hurts and gets irritated when I have diarrhea. It bleeds too. the vaginal one never hurts, The gas and occasional fecal matter are the only real symptoms from that one. I also have a rectal stricture. I have not really had rectal pain or fullness, I am not sure what causes that.

As for coping, well there is not much that can be done. I had a seton there for a couple months but it did not make a difference. I wear a pantyliner all the time just in case. My doc told me that if you are leaking you can use a low absorbency tampon. I am a bit nervous about that though, worried about infection.
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What r your rectal stricture symptoms? Sorry, last question.
 
Ask any questions you like, thats why we are here. Its too hard to ask others sometimes. You can always message me if you feel more comfortable.

My rectal stricture makes solid poo into a thin narrow ribbon. It does not hurt but the CR surgeon always asks how bad it hurts when I have a BM so I can only assume it does for most people.

I have had sharp twingy pains there randomly before but they seemed to be related with the fistula formation.
 
jbpharmd said:
I have already used Remicade for years but this was back in 2002- about 2006. I have already re challenged med once. Don't know if it would work again or not. It stopped working before. Thank you for suggestion.
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Figured you probably had, but since it worked so well for me, figured worth mention. I'm on weekly Humira now and HOPING it works on my fistula as well, but not much luck so far.
 
Had total colostomy Septemer, 1998. Life was great. About a year ago I would have mad dashes to the toilet, every once in a while. Got more and more frequent until about six months ago. Barely went out for fear of a accident and when I did I knew I would lose a pair of undies!! July 25th of the this year I was diagnosed with Crohn's and I have five or six ulcers from the first surgery to several feet into my small intestines. Currently on prednisone 40mg tapering off to 10mg over four weeks. See GI on August 3rd. If medicines don't work will be back in surgery again.

I'm weird (Doc agrees!) so my case is very unusual. All of my tests are normal and I was so used to the pain I ignored it.

I pray for everyone here for the blessing of heeling and remission.
 
My last abscess drain was taken out during an exploratory surgery but do they normally put you to sleep for drain removal or do they just inject numbing meds and yank it out?
 
I acccidently pulled my drain half out had to go to out patients they cut rest of stitches off,they terrible things(drains)my body hates them,I'm having my rectum and rest of large bowel removed and stoma put on other side,because of anal and vaginal fistulas,oh plus large hernia round stoma fixed,I'm gutted bout knowing what I'm going to go thru again,but if it gets rid of fistulas then it's a no brainer,wish you all well.
 
I have a few questions: does anyone notice that their pain is worse from the fistula when they are due for another dose of a biological? Mine is diagnosed to be a bladder to bowel fistula, but it seems worse on right before my Remicade infusion.
On the rare occasion I have sex, I also have pain-does this mean it possibly is in my vagina or that I have developed another one? If I stay on pred it isn't so bad but my doc keeps trying to get me off of it.
 
Mountaingem said:
I have a few questions: does anyone notice that their pain is worse from the fistula when they are due for another dose of a biological? Mine is diagnosed to be a bladder to bowel fistula, but it seems worse on right before my Remicade infusion.
On the rare occasion I have sex, I also have pain-does this mean it possibly is in my vagina or that I have developed another one? If I stay on pred it isn't so bad but my doc keeps trying to get me off of it.
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Speaking to your first question - my peri-anal fistulas are always much more active/painful and drain a lot more right before my Remicade, and if I have to go off the Remicade for a while for some reason, they continue to get worse. I imagine it's similar for those with other kinds of fistulae too.

And I'm not the right person to answer the second one! ;)
 
:rof: You are awesome ;) Well, the GI doctor wants to keep me on prednisone, is that how they handle the fistula flaring close to your infusion? I just want off of that stuff, ugh, but the bladder pain is unbearable.
 
Mountaingem, I had significant relief from my bowel to bladder fistula when on a Remicade/Imuran combo, but the symptoms gradually crept back after the last infusion. And yes, sex was painful and I wondered too if I'd developed a vaginal one too. But I think, cos our lady bits are all so close together, inflammation in one area can put pressures on others.
Constant UTIs can leave you very raw in that area too :-(
 
Grumbletum said:
Mountaingem, I had significant relief from my bowel to bladder fistula when on a Remicade/Imuran combo, but the symptoms gradually crept back after the last infusion. And yes, sex was painful and I wondered too if I'd developed a vaginal one too. But I think, cos our lady bits are all so close together, inflammation in one area can put pressures on others.
Constant UTIs can leave you very raw in that area too :-(
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:hug: I am so glad you shared this; it's nice to know someone else understands. The GI doctor (a man) keeps asking, "Well is it in your bladder or your vagina?" I have repeatedly told him that it all hurts. I'm sure you're right, it's all tender since I've had an ongoing bladder infection for six months.

No offense to the guys, but sometimes you need a woman doctor for these things. I may make a trip over to my OB/GYN and see if she has any suggestions.

Unfortunately I'm allergic to Imuran and I am maxed out on the Remicade, but I've only had one at that dose so I guess I just have to be patient.:ybatty:
 
Flaring up bad pain runs to bathroom and don;t enjoy food!!!! Dr. say :stinks:he won't doing anything cause surgery might make me weaker down in that area ? Also has anybody notice the stink in your body from a draining fistuala
 
Irish86 said:
Flaring up bad pain runs to bathroom and don;t enjoy food!!!! Dr. say :stinks:he won't doing anything cause surgery might make me weaker down in that area ? Also has anybody notice the stink in your body from a draining fistuala
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I have the freshest booty around, haha! I have been using tea tree oil to help keep granulation down (which works well for me by the way) and the other perk to that is that my bumm always smells like it just ate a mint!

Sorry if my sense of humor is bad. I just have had to make jokes to get thru all this mess. :ylol2:
 
Mountaingem said:
:rof: You are awesome ;) Well, the GI doctor wants to keep me on prednisone, is that how they handle the fistula flaring close to your infusion? I just want off of that stuff, ugh, but the bladder pain is unbearable.
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Thanks, and you're pretty awesome yourself! I try to stay off the pred. I sometimes use anti-biotics (Cipro/Flagyl) to get through to the infusion if it gets really bad, but usually I just grit my teeth and bear it until the infusion. Not trying to be brave, it's probably more laziness than anything!

Yours sound as though they might be worse than mine, though, so I don't know if I'd recommend that.
 
Ive been diagnosed with Crohns for ten years, and have fortunately only been hospitalized twice. Had surgery 3 years ago for 3 rectovaginal fistulas and an abscess the size of a baseball that almost killed me. The couldn't find one of the fistulas because it was so small, but they said my meds would heal it. Well I've been off meds for two years due to lack of insurance, and now the little sob comes and goes. It's very weird to fart through your vagina.
 
copeland said:
Yours sound as though they might be worse than mine, though, so I don't know if I'd recommend that.
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Oh, after reading your posts, I think we're in the same pattern, copeland. You probably are just better at toughing it out, but for me bladder pain is terrible. I stay on Macrobid which works OK but I get lazy taking it because it makes me feel lousy. I guess that's how I know it's working, jk.

I had another infusion this afternoon so I'm crossing my fingers that tomorrow it will be much better.

Here's to both of us healing up properly so this will all just go away, ugh.:beerchug:
 
I have a fistula loop to loop in the ileum area...large abscess in the area. I've had a lot of abdominal pain and the doc just kept giving me pain medicine and I kept saying this is a different pain we need to check it out and after begging for a while they did an mri and yep there is a reason for my pain!! Now I am not sure what is going on or what to expect. Colonoscopy and upper gi this week...sigh...no new meds. Do they usually do surgery for this??
 
bumdeal87 said:
I have a fistula loop to loop in the ileum area...large abscess in the area. I've had a lot of abdominal pain and the doc just kept giving me pain medicine and I kept saying this is a different pain we need to check it out and after begging for a while they did an mri and yep there is a reason for my pain!! Now I am not sure what is going on or what to expect. Colonoscopy and upper gi this week...sigh...no new meds. Do they usually do surgery for this??
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not sure GOOD LUCK
 
I'm seeking some feedback/any thoughts on my situation?

I currently have two setons in place related to three fistulae that the colorectal surgeon said is complex. I had a MRI scan done a few months back. Since then my GI said that options for aiding the fistulae to heal would be surgery either an ileostomy or a colectomy. He said that the fecal stream has to be diverted away from the fistulae to aid healing of it. I asked if I have an ileostomy could it be reversed if the fistulae heal? He said perhaps but I could develop problems with the fistulae again?

I'm not keen on having invasive surgery though. I know of people who have had a colectomy done and they can carry on with their life afterwards. However for me I'm just not keen on surgery.

I would appreciate any thoughts... thanks
 
Daisy, Nobody is keen on surgery. I had my ileum removed and about 2.5 ft of my small intestine and 6 inches of the colon. It was a good thing to do. I did not need the bag though. Sometimes surgery is a necessary evil.
 
I agree with Doug. Nobody ever really wants surgery, but if it makes you feel better isn't it worth it? It's not an easy decision to make though, no matter what. I'm sorry your having such a rough patch.
 
I'm wondering if anyone can offer advice on medication. I was diagnosed with fistulising and colitic Crohn's last December and was put on Humira in January. The Humira has been working well, according to two MRIs, for the fistulas, which are now substantially smaller than they were prior to Humira.
However, since Humira I've still had Crohn's symptoms such as diaorrhea and exhaustion, and I have frequent headaches although they are mostly mild. My gastro (I can't quite handle the term GI because it makes me think of a soldier!) wants to do another colonoscopy which is booked for this Friday to see what's going on inside to give me these symptoms. To be honest I hadn't been too worried about these symptoms because it seemed to me, based on this and other forums, that plenty of people still had these symptoms regardless of what medications they were on.

My gastro has said that after the scope he might put me on methotrexate in addition to the Humira, or change me to infliximab. I'm just wondering if anyone else has changed medications like this due to having similar problems. I'm a bit wary of changing medications - I was very ill for about a month after starting Humira - and I don't want to go through that again. To add to that my job is very stressful at the moment - I'm a university lecturer - and it's going to be very intense for the next 4 months. So getting sicker is really not an option, but then again if changing drugs fixes my other symptoms (or at least gives me a bit of energy...I miss waking up and not feeling absolutely exhausted before the day's even started!) that's got to be a good thing.
 
We have seen multiple GI docs and surgeons, and all have said Remicade is absolutely necessary for fistualizing disease if not allergic. My daughter is now in remission after months of Remicade and Seton.
 
Remicade gave me lots of energy, none of this waking up and feeling like I haven't slept at all!
I have also noticed my fistula has been healing, the drainage has slowed down significantly and I just had my fourth infusion last week. :)
 
It's good to hear that Remicade seems to be really potent and powerful for this problem as well as other Crohn's disease issues. It's something that I'm deathly scared of trying compared to the other Biologics but my doctor seems to be leading me in the direction of starting Remicade. They don't think Cimzia is completely doing the trick.
 
Good to hear that about Remicade and energy levels! I'm beginning to wonder if changing from Humira to that might be a better idea than sticking with Humira, if it will do a better job of improving Crohn's symptoms!
 
nogutsnoglory said:
It's good to hear that Remicade seems to be really potent and powerful for this problem as well as other Crohn's disease issues. It's something that I'm deathly scared of trying compared to the other Biologics but my doctor seems to be leading me in the direction of starting Remicade. They don't think Cimzia is completely doing the trick.
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Out of curiosity, why are you more afraid of Remicade than the others?
 
Because the chances of an allergic reaction to Remicade are higher than Humira or Cimzia because of the non human protein.
 
nogutsnoglory said:
Because the chances of an allergic reaction to Remicade are higher than Humira or Cimzia because of the non human protein.
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I have heard that, but from what I understand most people don't experience reactions. Remicade has certainly helped me a lot, and they infuse it very slowly for the first hour so that if you do have a reaction, it's not so bad. My doctor says that he's always seen much more improvement in peri-anal symptoms in patients who get Remicade vs. the other biologics.
 
NGNG have you tried Humira yet? That's really similar to Remicade but with less anaphlylaxis risk. Maybe that could be your next choice?
 
I had a bad reaction to Humira so Remicade is the last biologic for me to try that's FDA approved. I know there are others that are options if we fight insurance.
 
Sorry if this is off-topic, but I have a quick question for those with perianal fistulas.

How can you tell if a fistula is closing?

My fistula seemed to heal on it's own for about a month. I didn't know what it was at that point, so I didn't pay too much attention to how it was changing - one day it was just gone. It returned almost 3 weeks ago. I took some flagyl and cipro with no noticeable change (had to stop the cipro early due to some weird tendon pain). I'm waiting on a decision from my GI to put me on 6MP or Aza, but I'm hoping the fistula will resolve on its own before then (I know it's unlikely, but it's happened before).
 
Ah, ok. I can see why you wouldn't want to risk it with Remi after your reaction to Humira NGNG. Perhaps if you do try Remi, you could have a small dose of steroid before every infusion, as I know that can help prevent reaction. I honestly don't blame you for not wanting to try it though; I had an allergy to both biologics I tried before Cimzia and was really scared to start it.

Vetgirl, when my fistula was healing, it was actually quite sore and drained a lot. It also bled a bit, but my CRS said it would. I had a seton, though, so I don't know if that makes a difference.
 
It's scary and the biggest thing for me is I have panic attacks and I think I'll be super anxious and ill be my worst enemy. I am growing more accepting of making the switch as my stomach is getting more painful and my perianal disease is not getting under control. I may give Cimzia plus LDN or an immunosuppressive a try before calling it quits since it does help a lot, just probably not enough.
 
Hello I am new here.
I developed a perianal abscess in March and had it drained under local I was pregnant at the time 8 weeks, little bub didn't make it.
I developed an anterior fistula and had an advanced flap repair in may, unsuccessful devastated.
The fistula became much worse, my sphincter is apparently weaker than it should be.
I am scheduled to have a seton in next week. Very anxious about this and so worried the fistula could get worse or I could end up incontinent.
I'm afraid will develop another abscess if I dont get a seton.
I apparently dont have crohns I hope you dont mind me asking here but you all seem to know a lot.
Any advice on setons would be appreciated, I know what they are but how painful or difficult to live with are they. I really am so anxious and feel so low at hte moment.
 
I have had a seton for about 8 months now and it really isn't painful at all. Most of the time I can't even notice it is there. There are however a few times where mine rubs against the other butt cheek and that can be painful.
It can be a little difficult with the drainage, but I often just wear pads to ensure it doesn't leak onto my underwear.
I hope things get better for you here on out. :)

NGNG: I have a severe needle phobia and I always take 3 Ativan before my infusion, it calms me down a lot and ensures I don't have a panic attack. Prehaps your GI could get you a prescription for those?
 
pain said:
Hello I am new here.
I developed a perianal abscess in March and had it drained under local I was pregnant at the time 8 weeks, little bub didn't make it.
I developed an anterior fistula and had an advanced flap repair in may, unsuccessful devastated.
The fistula became much worse, my sphincter is apparently weaker than it should be.
I am scheduled to have a seton in next week. Very anxious about this and so worried the fistula could get worse or I could end up incontinent.
I'm afraid will develop another abscess if I dont get a seton.
I apparently dont have crohns I hope you dont mind me asking here but you all seem to know a lot.
Any advice on setons would be appreciated, I know what they are but how painful or difficult to live with are they. I really am so anxious and feel so low at hte moment.
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I apparently didn't have Crohn's when I developed my first fistula either. Then I developed more. For a long time it was my only disease sign. Was diagnosed last fall. the first month or so with a seton is painful and awkward, after that it's not so bad. Mine had a tendency to irritate my skin whenever I walked or ran too much though. But I even managed to ride my bike with two setons.
 
Hello New person, i dont see a name anywhere. Ive had setons before. I recently had a fistulotomy, but it unfortunately has come back. I have an appointment in about a week to have a seton replaced. I have found, those little round pads i believe that are for removing makeup or nail polish work wonderful to keep the seton from poking into the other cheek. it also helps with drainage. They come in a sleeve and only cost a couple of dollars. Cheep and they work. I hope everything goes well for you and you get this cleared up and that will be the end of it.
 
With my seton, I found Tuck's pads helpful. They alieviated some of the discomfort and kept the area clean. It's also important to do lots of sitz baths.

Unfortunately, I found a new abscess about a week ago. I had it drained under anethesia yesterday, but it's so incredibly painful today. I'm taking pain meds, doing sitz baths, and trying to keep it clean. Is there anything else I could do to take some of the pain away?
 
I sit on a heating pad. In fact I am right. now. I did have one draining that was so horrible that I stayed in bed with an ice pack. Good luck. I hope you find some comfort.
 
Thanks for all the advice.

Alliruns, how did they diganose your crohns in the end.?

Does the seton stop fecal mater coming through the fistula?
I seem to be leaking post bm at the mo, is that because my muscle is weak.
Could this get worse with a seton.

So distressed with all of this.
Thanks An
 
I have some leakage after a BM ( ha, autocorrect wants to change this to BMW), bordering on incontinence. I had this before my seton placement, and did not notice the seton making it any worse.
 
I'm having yet another surgery. I'm starting to feel like a lab rat. How many can I take? I'm
Physically and mentally exhausted and so upset. I can't believe this abscess and fistula business won't end. I really don't know what I can do.

How much can surgeons see under EUA anyway, isn't an MRI much more effective?
 
Another surgery! You need a break from all this crap soon! I really hope it heals up the area and your problems go away. Sending lots of support.
 
My CR surgeon found a fistula during EUA that the mri did not pick up so yes, i believe they have value. I an sorry for your ongoing struggles. I totally relate. It took four surgeries to get my perirectal fistula to stop creating new tracks and abscesses. Good luck.
 
Ok guys, I have a quick question. I got an abscess drained last Wednesday, and it's been draining pretty constantly ever since, which is good. Tonight, though, the drainage has been slightly bloody. Is this something I should be concerned about, or is it just normal?
 
If its just a little bit I wouldn't be concerned. I have a drain in for a few weeks and have a little blood daily. The area is raw and any movement probably cuts around a little causing some blood.
 
I had my seton put in 4 days ago. Going ok, some pain\discomfort today.
Stressing about keeping it clean, tricky. Any tips?
 
How hot do you guys keep your sitz baths? Warm water feels too room temp for me but hot water might burn and be counterintuitive?
 
I use pretty hot water. I do worry about it a little, but I feel like with the cooler water might not promote as much drainage. Lesser of two evils I guess...
 
I guess my fear is I read somewhere we aren't as attune to temperature down there and could get actual burns. We certainly don't need anything else being problematic or painful down there.
 
I'm using very hot water ...skin pink. I just feel like it takes so long to feel completly clean like a few hours.
 
Hey all, I am new to this group/site. Ive read some of the recent posts and I feel like everyone is speaking my language for a change. Soo...heres a little bit of my story...
I was always a very healthy person....until I was diagnosed with crohns disease 3 years ago. At that time I had chronic stomach pains and such, I was put on several drugs and finally found one that seemed to work. Imuran. Last year I had a perirectal abscess. I had draining tubs put in and things seemed to be getting better...however the abscess came back and I had an additional four surgeries. I then met with a specialist last December and he put setons in. They seem to do the trick and help my situation. I still have that seton in, however it continues to drain. My doctor then put me on Cimzia as well thinking that it would help with the infections and my crohns. I believe it has helped. However in May I had two more surgeries and another couple setons put in. It has now be 7 total surgeries and I still am dealing with the infections flaring up every now and again. I just don't feel like there is an end in site to any of this. I still have the setons and I will probably have them for quite some time. I am also on flagyl to help kick the infection, though I don't necessarily feel like it does, it only makes me feel very ill. I have a wonderful doctor, however I feel as though Im the first patient he has had that has had these abscesses that just wont go away. I do the sitz baths daily, cimzia once a month, flagyl and leviaquin daily....Any other thoughts ideas?! I never thought Id be going through this still a year later...any thoughts and or advice would be greatly appreciated:)
 
Honestly it sounds like you're doing everything right. Although you might want to think about adding Cipro to your antibiotics regimen. It might help you more than Flagyl alone. I really hope you feel better soon!
 
Hoping someone can help me. I am due to have surgery on August 8th, 2013. I have a fistula, abscess, and a stricture. Surgeon is doing a ileocecal resection. I'm afraid of a big scar or an ileostomy. I'm stressing out over this. :(
 
Had 8 surgeries for perianal abscess and high complex fistula since oct 2012. Changed surgeons and have a long term seton in place. Whilst surgeons say I shouldn't need antibiotics I disagree as I clearly need cipro at times. I now recognise the signs as have stomach pain, nausea, extreme tiredness, inflames skin at sight of wound and itchy skin. I have also noticed small abscessed skin where the wound is healing. Has anyone else had this or experienced my symptoms and reinfection with a seton.

I do not have a crohns diagnosis.
 
When you stated 'vaginal abscess' were you referring to Bartholin Gland Cyst/Abscess by any chance? I've had them before myself where they would clear up to 'cyst' form and when my cycle was due the cysts would begin to enlarge. Sometimes they turned into an abscess & sometimes they would just remain a cyst (thank god!, lol).
Click to expand...

Rose, do you know if there are any connections between bartholin's abscesses and crohns fistulas?

I ask because after I was dx with crohns, probably about 3 years, I developed a bartholin's cyst, which then developed into an abscess. I was on different antibiotics for about a year, but it kept coming back, so it I had it incised and drained.

The incision has never closed over, and remains open now. I'm quite glad, because it stops me getting another abscess (the pain was UNREAL) and it just drains itself whenever it gets infected.

Now I think I may have a rectovaginal fistula? I have a discharge, passing wind through my vagina (very strange feeling) and my bottom is very sore whenever I have BM. Waiting on my GI organising an MRI to confirm this. What would the next course of action be if I do have this fistula?

Sorry to ask you this direct, but you seem very clued up on it all! If anyone else has any info/advice, I'd be very grateful.
 
I'm definitely joining this group! Just got diagnosed with Crohn's last week, but have had symptoms since January, and I'm a sufferer of fissures, it's a pain in the caboos!
 
avierocks88 said:
Hoping someone can help me. I am due to have surgery on August 8th, 2013. I have a fistula, abscess, and a stricture. Surgeon is doing a ileocecal resection. I'm afraid of a big scar or an ileostomy. I'm stressing out over this. :(
Click to expand...

Hi. Sorry to hear you need surgery. Personally I found surgery to be a relief. I suffered for years with abscesses and fistulas. I've also had surgery for strictures. Surgery brought releif and healing. I could get on with life. Is the surgeon talking temporary ileostomy? I hope everything goes well. Sending you my support and best wishes.
 
I only have my seton with two weeks, trying to accept it and get on with it...
Will it eventually stop draining? Or at least reduce the volume
 
The draining will definitely reduce in volume as the fistula closes and heals. However, the process is often slow, but don't give up! You are doing great and you should reach a point where it doesn't bother you as much and you aren't constantly aware of it.

I have had mine for about 8 months and it is always draining, however it is a very little amount and I wear panty liners to stop leaks.
Best wishes. :)
 
deep_hazra said:
Hi....

I have recently been Diagnosed with Crohns & have got really bad fissures....Doctor has given me an ointment to apply...

Looking for Any added tips on how to deal with it???
Click to expand...

Fissures are such a pain!! When I had my fissure, I had an ointment and did tons of sitz baths. I hope it helps :)
 

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