Fistulas, Fissures and Abscesses Support Group

Crohn's Disease Forum

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My experience was exactly like Jay's. I forgot to mention sitz baths. They really helped the pain.

I understand it seems like a no-win situation, but I don't know what better choice there is with fistulas.

Wishing you good luck with the procedure Sue!
 
I use large gauze pads from Target along with a pad and two panty liners to catch my drainage. I have found that Cipro and Flagyl do help slow the drainage. I am on Cipro only now as Flagyl makes me feel awful.

Simponi helped considerably with my perianal disease but couldn't quite get me into remission, so I stopped it. I didn't actually realize how much it was helping the fistulas until I stopped. :(

Going to be starting Stelara as soon as I make an appointment with the home care nurse.

In terms of saving money, I know some people order cases of gauze off Amazon or eBay and that is much cheaper. I really like the Target store-brand gauze and the pads work out to be about $0.20 each.

CassyVS said:
I had 2 setons placed and they are getting to be exhausting. I must constantly change the dressing due to leakage/drainage and I am spending a fortune on gauze and tape. Does anyone have any guidance on how to limit the amount of drainage that comes out of the open wounds where the setons are placed? Any advice would be GREATLY appreciated!!

:)
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I had some removed when they did my setons and fistulotomy in December. It was fine. I think the worst part of the recovery was the fistuolotmy, but hard to tell, really. They have started to come back though. :(

I recommend a peri bottle to squirt area clean after a bowel movement rather than wiping and also frequent sitz baths.

hingrum said:
Has anyone had a positive experience getting a anal skin tag removed?? I am supposed to have it done tomorrow.
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Are there Amy people with Crohns disease, peri-anal fistula tracts and abces who underwent:

Resection lower part colon-upper part colon beeing attacked to the rectum as a "organic pouch". And to fill up the abces a gracillus flap?

Please let me know experiences and etc!

I a, very sick have had over 50 Operations, colonstoma, seton drain, 4x dosis infliximab, super high dosis antibiotics and nothing works. The pain is horrible...
 
Hi all... Had a perianal abscess drained 3 months ago... Went to doc today said fistula is forming and I should get it drained... Does this ever end?.? Also getting colonoscopy before the surgery"....ugh! What's the healing time compared to the draining abscess,surgery? It was a very small abscess.
 
I have surgery tomorrow afternoon.Fistulotomy and setons.I have five surrounding my rectum,I am told.So,tomorrow will be a busy day!
 
Harper05 said:
Hi all... Had a perianal abscess drained 3 months ago... Went to doc today said fistula is forming and I should get it drained... Does this ever end?.? Also getting colonoscopy before the surgery"....ugh! What's the healing time compared to the draining abscess,surgery? It was a very small abscess.
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Do you mean that the surgeon is placing a draining seton in the fistula?
 
Not sure how to reply to just one person but... Good luck tomorrow Dave13! My surgery went well today...I believe. I had only 1 seton put in. Phew...considering I was thinking three. The 3 hour trip home was tolerable likely due to pain meds. Instead of putting me to sleep, they make me feel like a boost of caffeine. Wish I would sleep instead.

Dreading my first bm. But overall, I would have to say I'm doing well. Calm before the storm??

Thanks for all the tips and thoughts.

Sue
 
I'm getting ready to go to the hospital soon.I'll post how everything went,all new to me.I like new experiences,but this...or should I say butt this is not one of them. :)
 
Day one at home has been good. No pain meds and pooping is fine other than no wiping. I squirt the area with water bottle, spray with shower head then sit in tub. Seems a bit much but I think she cut out a large area next to seton. It's about as big as a finger print. How is that sucker going to stay clean and heal? Anyone else experience an open wound in their peri area?
 
Yay Sue! So glad you're doing well.
I haven't experienced that exact thing, but I've been using one of these ever since getting a fistula: http://www.amazon.com/TOTO-Travel-H...8&qid=1405137797&sr=8-7&keywords=toto+washlet
I was going through the whole shower, squirt rigamarole, and can't recommend this more highly. I'm hoping to get the toilet seat model someday...when I'm more flush (ha ha! sorry, terrible pun)
 
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That looks awesome! AND they will even gift wrap it for me! Tee! Thanks for the tip! Maybe something I can carry with me? To work?
 
Hi Sue,
My 12 year old son has had a large chunk cut out of the peri area, we had to go back to the hospital each day to have the packing and dressing changed. it was then cut to every two then three days. The area had to be kept clean and dry. Very difficult in that area. His was quiet large about the size of a golf ball that they removed and it took about 3 months to heal. Even with all the pain he went through if you asked him he would say the worst part was getting the sticky top bandage off every day. But he did get through it and is all healed now. He then had to have 2 draining setons put in which he managed with. They have now both fallen out and so it is back in about a week to have them put back in.
Hope yours all goes well. Maybe some day someone will come up with a better solution.

James mum.
 
Suehelb said:
That looks awesome! AND they will even gift wrap it for me! Tee! Thanks for the tip! Maybe something I can carry with me? To work?
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Yes, it's perfect for mobile use. I carry mine in my purse, and actually got a second one after about a year so I could keep one in the bathroom and one in my purse. The only thing is you kind of need a bathroom where you have access to a sink in private, not the kind where you're in a stall and the sink is out where everyone else is. I find it usually takes two fill-ups and I still need to use a wet wipe gently afterwards just to make sure I'm completely clean.

This is the first I've heard of a flap/plug combo. I'm a little afraid to ask, but what is that? Is it more permanent than a seton?
 
James mum...I'm so sorry your 12 year old son has had to go through this mess. I'm praying this disease avoids my children. Right now my hole is open. No gauze or packing. Not sure that is good or bad. I can only imagine the packing... Did he miss a lot of school? I'm not sure how I will deal with this at work? I teach kindergarten. Pretty lively job with little bathroom time. How do you deal with that? Today I packed my purse with some water bottles and hoped I wouldn't need to poop. I made it until I got home. Phew!

Aloe..can you explain more why I would need a private sink for that gadget? Is that to fill it! Can I fill at home? How many of you own a sitz bath toilet thing and do you use Epsom salt in your sitz baths?

I so appreciate everyone's help and advice!

Thanks!

Sue
 
Suehelb said:
James mum...I'm so sorry your 12 year old son has had to go through this mess. I'm praying this disease avoids my children. Right now my hole is open. No gauze or packing. Not sure that is good or bad. I can only imagine the packing... Did he miss a lot of school? I'm not sure how I will deal with this at work? I teach kindergarten. Pretty lively job with little bathroom time. How do you deal with that? Today I packed my purse with some water bottles and hoped I wouldn't need to poop. I made it until I got home. Phew!

Aloe..can you explain more why I would need a private sink for that gadget? Is that to fill it! Can I fill at home? How many of you own a sitz bath toilet thing and do you use Epsom salt in your sitz baths?

I so appreciate everyone's help and advice!

Thanks!

Sue
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You need a sink just to fill it up. You could fill it up at home and carry it with you that way, but it folds down into a smaller size when it's empty. I usually carry it with me empty, and then slide it open and fill up the tank at the sink right when I'm going to the bathroom. If you don't mind carrying the extra weight and have the room to carry it full which would make it twice as big, you could definitely fill it up at home (it's still not huge, and would easily fit in a tote bag that way). Also, it's nice to fill it up with warm water, but not necessary.
 
I checked out the link that you provided aloe.It seems quite handy.

I ended up with five setons from yesterdays surgery.I felt pretty good today as far as pain and discomfort go.It was more discomfort than pain.I have to call Monday morning to talk with the surgeon and find out more.

I used a mirror to see what it all looked like,h,m,m,m,..I suppose interesting is a polite word to use.

Suehelb-one of the five is fairly big and open.I guess that is where the regular sitz/showers and antibiotics come in.Lets hope so.Hope you do well.

Figuring out the best way to apply a panty liner to my underwear was not something I thought I would ever have to do :eek2:
 
Dave13,

Hope you are doing well this evening. Right now I've been folding over 4x4 inch gauze and putting in my crack to catch the drainage. I also have on a panting liner but doesn't seem to be needed much. Oh the things one goes through...seriously?! I find myself in moments of self pity and then embarrassed that there are so many with more challenges than I or are younger .... I can't imagine my children having to though some of what I have read.

My open area is just open. Seems odd to me. I also am on flagyl but the surgeon said I could stop. Decided I am at least going to finish the prescription. All my docts have different ideas...sorta. My seton surgeon doesn't like flagyl, the surgeon who drained my abscess does. Who knows.

Is this the first time you've had setons? Hope you heal quickly!

Sue
 
I just had two setons placed in four days ago, really struggling with the aches and pains still. This group is perfect for me as although i have had Crohn's for over 20 years this is the first time i have had problems with abscesses. I was really worried about the huge hole after the setons but seems that this may be normal? I also dont know how to reply to only one post as i am new to this but thanks aloe also for the link, i am meant to be going away in 4 weeks if the aches and pains subside so this will be perfect.
 
You're all most welcome! I don't know what I would do without that thing, so I couldn't recommend it more highly.

I'm so sorry Dave that you're having to use panty liners. I certainly never imagined it would be more than a once a month thing. It's a little more challenging in men's boxers.

I'm not sure about the open areas, but I think that's probably for the best. When my abscess was first drained and before I had the seton, they were really concerned it would close up, so I had to have the packing. The packing changes were the worst! I ended up being given Xanax and Vicodin to be taken beforehand just to get through it. Felt like an idiot, but it was horrible.
 
Aloha Everyone!

Today marks one year since my daughter came to me with concern about the LARGE bump she had on her bottom, which after months of appts and countless "second" opinions, turned out to be a fistula. It was opened and drained last November and she was diagnosed with severe fistualizing Crohn's in December. It's been 8 months since her fistulotomy and it is finally on the home stretch of being fully healed. All I have to say is, Thank God for Remicade. She has made TREMENDOUS improvements on this treatment and I'm so thankful that she's healing. She's been through more pain at 10 years old than I could ever imagine. I would like to send my thoughts and prayers to all of you out there who have had to endure this kind of pain. I can't imagine what it would be like. You guys are my superheroes :ghug:
 
Hi Suehelb,
Yes from the time we found out which was about the last term of year 5 for him and up to the second term of year 6 he missed quiet a bit of school. He found it good to take a cushion to sit on at school but after the 3 -4 months when it finally healed he didn't use it much then. He manages quiet well with the 2 setons only thing is there are some days he comes home and can hardly walk due to the chaffing, but have found a good salt bath and some nappy barrier cream works great for this.

James mum
 
Hi all
First of all, a huge thanks to this wonderful site and forum! I've written on a couple of other threads, but I'm guessing this is the thread for me.
I had an internal perineal abscess form and had an MRI scan which showed I also had a fistula. When the abscess was "ripe" enough they took me in for drainage and fistula removal.
When I came round they said they hadn't dealt with the fistula and my consultant will talk to me about it when I have an outpatients appointment ( July 24th ) the abscess was huge and left a gaping hole which I'm still having packed daily ( op was 4 weeks ago )
I'm so confused... ..... I've read on my district nurse notes that the fistula is a transsphincteric fistula - I asked my doctor about it and he said the result after having an op on the fistula would be anything from a seton to a stoma bag, only the surgeon/consultant will know .......he also said it could involve a few operations more than one....everything is different for different people, I know that, but I'm so confused and impatient to know what the future holds.
They have ruled out Crohns, they think the cause may be years and years of constipation, but havnt really looked into it as yet...
I just don't know what the future holds.
XX
 
Sazzle said:
Hi all
First of all, a huge thanks to this wonderful site and forum! I've written on a couple of other threads, but I'm guessing this is the thread for me.
I had an internal perineal abscess form and had an MRI scan which showed I also had a fistula. When the abscess was "ripe" enough they took me in for drainage and fistula removal.
When I came round they said they hadn't dealt with the fistula and my consultant will talk to me about it when I have an outpatients appointment ( July 24th ) the abscess was huge and left a gaping hole which I'm still having packed daily ( op was 4 weeks ago )
I'm so confused... ..... I've read on my district nurse notes that the fistula is a transsphincteric fistula - I asked my doctor about it and he said the result after having an op on the fistula would be anything from a seton to a stoma bag, only the surgeon/consultant will know .......he also said it could involve a few operations more than one....everything is different for different people, I know that, but I'm so confused and impatient to know what the future holds.
They have ruled out Crohns, they think the cause may be years and years of constipation, but havnt really looked into it as yet...
I just don't know what the future holds.
XX
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Its a positive thing that you arent diagnosed with Crohns. Your chances for healing are much better when you dont have Crohns. So important for good healing is to get rid of the infection. They will fight the infection with good drainage (woundtreatment/packing, cleaning of the wound, seton, etc) and antibiotics. So when the infection is gone the abscess needs to grow from the inside out. This is inportant to prevent any new abscesses or fistulas. When the abscess healed they can see what the best method is to get rid of the fistula. This will be done either with medications or surgery. Afcourse you never know what will happen, but keep the spirit up you are not alone!
 
Suehelb said:
Dave13,
Is this the first time you've had setons? Hope you heal quickly!
Sue
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Yeah,this is my first experience with setons and perianal crohns.Previously I had a resection(upper jejunum) from a blockage,last November.The Monday before Thanksgiving!

I hope you heal quickly too...and everyone else as well!!! I am happy to have found this support group.

I am happy for removable shower heads,makes the at home cleanings easier.I count my blessings where I find them! :)


Sazzle-It's good your fistula are not from crohns..It is scary not knowing what the future holds,we can imagine dire scenarios when left to our own thoughts.Don't let your nerves get the better of you waiting for your next appointment.Visit us here to let out some of the 'hurry up and wait' anxiety.
 
Sazzle...hang in there. I agree with Dave. Be patient and heal.

Shower heads work perfect and wish the were portable for my hotel weekend coming up. Hoping I can go.

James mum...if your son can bring a pillow to school...by God I sure can bring one with me. He must be a strong young man. Toots to him for doing what you have to do!

Makenas mom...I can't imagine having my daughter struggle with this. I am so happy to hear remicade is working for her. I believe that is my next step.

When I was diagnosed in 1997 I had no idea what this disease was capable of. I have been so naive while it's been in remission for 13 years.

Thanks everyone for all of your support and info. It's so nice to have this group to go to.

Have a great day!

Sue
 
Suehelb said:
When I was diagnosed in 1997 I had no idea what this disease was capable of. I have been so naive while it's been in remission for 13 years.


Sue
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Sue, I was diagnosed in 1988 when I had a blockage and needed a resection, and then was mostly in remission (or denial where it wasn't bad enough to need treatment) for almost 25 years. I was completely naive too about what this disease is capable of! When you said that I just related so much. When it started I didn't have the internet to read all this information about fistulas. I imagine if I did, I would have been very worried. At least I had all that time of innocence I guess. It's a rude awakening when you do learn about it though.
 
missybee said:
I just had two setons placed in four days ago, really struggling with the aches and pains still. This group is perfect for me as although i have had Crohn's for over 20 years this is the first time i have had problems with abscesses. I was really worried about the huge hole after the setons but seems that this may be normal? I also dont know how to reply to only one post as i am new to this but thanks aloe also for the link, i am meant to be going away in 4 weeks if the aches and pains subside so this will be perfect.
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I had four setons placed in December 2013. I also found the first week the most difficult. I am optimistic you should feel so much better in 4 weeks : )
 
Thanks all
I guess one part of me is lucky in them saying they don't think it's Crohns....but the other part ( in a VERY strange way ) wishes it was - only because they haven't ruled out the big "C" word yet, and that's something I really don't want to hear them say.
Other than the abscess and fistula symptoms, I feel generally unwell, irritable, headachy and have the most horrendous cramps in my thighs, tummy and pelvic area, that make me double up with pain.
But they are looking/testing etc and that's all I can ask.... It's just all the waiting around.

The transsphincteric fistula op is something I've not found anyone (who has already been there) to chat to about.... I'm determined to though! The thought of losing my sphincter muscle petrifies me. But I know there's a lot worse things to lose.

All you lovely people, look after yourselves, and thankyou xx
 
After reading that article, I'm wondering if there's always a resection with fistula removal? I have a bowel to appendix fistula discovered a few months ago. I continue to have pain so I assume it's still there. I've only been on Humira a couple of months & don't see my new GI till 8/12. I'm worried I should be on Humira once a week at least for the time being.
 
Sorry missybee, I'm not familiar with many treatments. Hopefully someone can offer some help. Have you posted under any other areas?

Sue
 
I am able to use 4x4 sterile pads instead of panty liners.The draining has slowed considerably and is just blotching right now.The gauze steri pads seem to allow more air to the setons while helping to keep things clean.Makes getting about more comfortable.:)
 
dave13 said:
I am able to use 4x4 sterile pads instead of panty liners.The draining has slowed considerably and is just blotching right now.The gauze steri pads seem to allow more air to the setons while helping to keep things clean.Makes getting about more comfortable.:)
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Yay! That's great news. I'm going to try that.

Do you think it's Remicade that's slowed the drainage? Mine's remaining pretty consistent despite Remicade and now 6MP. I wish there was some magical solution!
 
I am not on remicade or other yet. Mine has never really drained a lot and from what I've been reading it could be because I'm on flagyl. I will be going on remicade or other once I'm not having issues with abscess, I believe. Maybe 1 month?

Sounds like a few cheers today for several of us.

Toot!
 
I am not on Remicade or Humira right now.My GI chose Remicade over Humira because he feels it would be more beneficial for me.He told me he will schedule the blood work and skin test(?) to see if I can use Remicade.A lot happening at once.

Flagyl does not bother me but cipro can make me sick.The dairy restrictions for the cipro are challenging.I am on the SCD and yogurt and cheese are common in my meals.I eat yogurt in the morning and take the cipro later in the day.I can deal with it for a few weeks.

I think we want to encourage the draining.It's what is 'making us drain' that we want to stop.No kidding,right?:)
 
dave13 said:
Flagyl does not bother me but cipro can make me sick.The dairy restrictions for the cipro are challenging.I am on the SCD and yogurt and cheese are common in my meals.I eat yogurt in the morning and take the cipro later in the day.I can deal with it for a few weeks.

:)
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cipro makes me vomit after day 3.
Flagyl never seems to do anything for me, except make me gag when I get to the bottom of the bottle - man do they stink!
 
Hi guys leeza here I'm very new to this just git diagnosed 2 weeks ago I been sick for months they thought it was reflux and the meds weren't touching me and of corse I couldn't afford to keep going to the doc and put it off then 2 weeks ago I woke up in a lot of pain and finally got and appointment thought it was my appendix and I had lost a lot of weight due to feeling sick he had a feel came across a lump I had to go to the hospital that night they found I had an abscess in my small intestine told me it was a secondry infection to Crohn's it blew me away they put me on antibiotic and now im on predisone I'm feeling heaps better now I will be on that for 3 months they bringing it down 5 mg every 2 weeks I got vitiman d3 tabs to take 2 once a month and will have a colonoscopy in bout 6 weeks I'm a little scared still coming to grips with it but relieved to know that it not all in my head and I'm taking one day at a time your posts have helped me understand it from people that have been there :) oh yeah the inflamtion showed up in a ct scan
 
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Hi all, I am new to this group. I just had an abscess a couple of weeks ago after not getting them for almost 2 years (which, around that time, I used to get them every month - not entirely sure why). I was really pissed off and depressed when I got it this time around because I recently changed my whole diet around after going through the Elimination Challenge, and I thought things were rough at first because my body was going through some changes in regards to food. Turns out I had a flare up without even totally realizing it - I lost a long of weight that I worked hard in gaining finally, my hemoglobin went down (I have to get an iron infusion), and I am just so tired all the time. I have been told that I have a fistula somewhere on the inside, but because it's so inflamed, the doctors can't find it and place a seton. I am feeling a little bit better, but emotionally and mentally a little hopeless again. Abscesses and fistulas are probably the worst part of this disease, in my opinion. I just keep reminding myself that each day is a new day, and that I hope things will get better from now on.
 
Basmah said:
Hi all, I am new to this group. I just had an abscess a couple of weeks ago after not getting them for almost 2 years (which, around that time, I used to get them every month - not entirely sure why). I was really pissed off and depressed when I got it this time around because I recently changed my whole diet around after going through the Elimination Challenge, and I thought things were rough at first because my body was going through some changes in regards to food. Turns out I had a flare up without even totally realizing it - I lost a long of weight that I worked hard in gaining finally, my hemoglobin went down (I have to get an iron infusion), and I am just so tired all the time. I have been told that I have a fistula somewhere on the inside, but because it's so inflamed, the doctors can't find it and place a seton. I am feeling a little bit better, but emotionally and mentally a little hopeless again. Abscesses and fistulas are probably the worst part of this disease, in my opinion. I just keep reminding myself that each day is a new day, and that I hope things will get better from now on.
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I just git my first abscess couple weeks ago that's when I found out I had Crohn's I know how u feel but I'm feeling better on the predisone so far so good it not ease is it
 
Leezapeeza,

Good luck with your colonoscopy. You will get good information about the disease from that and the procedure is a complete breeze. I wonderful nap if you ask me. Hopefully with good meds you'll be on the road to remission.

Basmah... It can be so discouraging. Hopefully they'll get it figured out for you as well. Getting you iron boost will surely help with the tired piece. I use to think when I was tired all the time I was just avoiding intimacy. Ha! After reading so many posts I know it's that I really am tired. When tired...sleep is healing.
 
Everyday is a challenge, some more than others. My last remi dose was doubled because fistula is not healing and I had been treated for new abscess with cipro and Flagyl. Had very bad reaction to cipro and hope to never take it again. Anyway after last remi had 10 great days! Abscess was gone. Fistula seemed smaller with no pain or drainage. Unfortunately on day 11 I woke up with abscess. Now I'm on Flagyl again and waiting for next remi dose. Can not believe it! I've been battling this abscess and fistula for almost 2 years. So frustrating!!!
 
Omg I'm just reading some of your posts so ya saying that when u get an abscess in the small intestine it at a severe stage ? Cose That's how I git diagnosed 2 weeks ago they found I had inflammation and an abscess in the iliem part ( feeling overwhelmed ) :(
 
Leezapeeza,

Not sure about the "advanced" stage. I will tell you I was diagnosed in 1997, had issues in 2001 and the basically nothing until now. So 13 years of...I have Crohn's, i poo a lot but I'm fine. 😉. Don't let the forum scare you too much. It's a serious disease but it sounds like the meds they are using these days are great. I will be stArting one soon.

Think positive!
 
Thanks for that sue I still have a lot to learn I suppose about the disease and every one is different in myself I'm feeling better knowing that there is help out there and meds and the right food I'm a bit nortie at the moment I'm a smoker I want to no need to give up but ATM finding out I have this has scared me a little but every day I wake up pain free and not feelin blaaaa is and awsum day ;))
 
leezapeza said:
Omg I'm just reading some of your posts so ya saying that when u get an abscess in the small intestine it at a severe stage ? Cose That's how I git diagnosed 2 weeks ago they found I had inflammation and an abscess in the iliem part ( feeling overwhelmed ) :(
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If you have an abscess (or a fistula) I think it's considered to be on the more severe side of things, yes. But if it's just an abscess it can be treated -- biologics and antibiotics work well for that.

I have severe fistulizing Crohn's and despite the title of it being "severe" I've been in remission since last October with no problems. You'll be fine. Just make sure you keep on top of things and see your GI often, and report any new symptoms or changes.
 
Thanks for that they pretty good ATM my doctor finally came threw for me Afta not having much faith in him I'm researching all the foods and wat I can eat and have and eliminating I'm in predisone 30 Mgs they tapering me off 5 Mgs a fortnight I'm feeling ok most of the time which is great ;)
 
I am new to this group and am thankful to have the opportunity to hear from others who have experienced similar problems. I have learned found several tips which have really helped me over the last two weeks. I have a high transphencteric fistula for which I had a cutting seton placed two weeks ago. I have had >5 abscesses over the years and finally agreed to do this surgery. I do not have Crohn's (that I know of) but think that I oughta get checked. I have old SBFT from years ago which suggests terminal ileum Crohn's, but never been told that I have it from any physician. I don't hear a lot about the cutting seton on the threads but it has been fairly painful. I constantly have drainage and find the gauze to chaff. Returning to work soon. Yikes. I don't know how long this cutting seton will be with me. I suspect that there will be a fistulotomy/ "lay open" surgery when it finally cuts through the sphincter muscles. I will be curious to hear what Sazzle hears from the CRS . Take care all.
 
GI APPT.- July 31st.-Seeking Advice on What MRI/MRE Tests To Have?

I have Perianal Crohn's and am currently scheduled for a Pelvic MRI. I currently have a number of setons in place & these will have to be removed temporarily prior to the Pelvic MRI. The setons are held together with metal clamps thus their removal is required for the MRI! I understand setons may also cause artifact if not removed. I have read that the Endoanal MRI May provide a more detailed image for Perianal Crohns (ie.Fistula tracts). Has anyone had the Endoanal MRI done? Is there a preference for the Endoanal MRI versus the Pelvic MRI or should I see if I can have both tests done?

While I have the setons removed I would really like an MRE of the small bowel. I have had one Colonoscopy of the colon but no assessment yet of the small bowel. My GI has not raised the issue of a small bowel investigation rather it has been my line of questioning. I felt badly for raising this request during my last appointment. Am I unreasonable to ask for small bowel investigation?

I thought the temporary removal of the setons would be an ideal time to ensure I have a thorough baseline assessment via all options of MRI's - MRE 's that are available for Crohns patients. I have currently been advised by my GIs office that the Radiologist said I do not meet the criteria for a Small Bowel MRE & must have a CT Enterography instead.

What has been your experience in MRI-MRE testing? What is reasonable in investigating our disease? What is standard protocol? Why wouldn't I meet criteria for a small bowel MRE? What MRI-MRE tests has your GI required?
 
lourosa71 said:
I am new to this group and am thankful to have the opportunity to hear from others who have experienced similar problems. I have learned found several tips which have really helped me over the last two weeks. I have a high transphencteric fistula for which I had a cutting seton placed two weeks ago. I have had >5 abscesses over the years and finally agreed to do this surgery. I do not have Crohn's (that I know of) but think that I oughta get checked. I have old SBFT from years ago which suggests terminal ileum Crohn's, but never been told that I have it from any physician. I don't hear a lot about the cutting seton on the threads but it has been fairly painful. I constantly have drainage and find the gauze to chaff. Returning to work soon. Yikes. I don't know how long this cutting seton will be with me. I suspect that there will be a fistulotomy/ "lay open" surgery when it finally cuts through the sphincter muscles. I will be curious to hear what Sazzle hears from the CRS . Take care all.
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Hi Lourosa
So sorry to hear what you are going through, it sounds very similar to me.
My abscess wound has almost healed now (5/6 weeks on) and I have an appointment tomorrow afternoon with the Consultant for an update.
Now the abscess has almost healed the next step is to deal with the transsphincteric fistula - I guess I will find out if mine is high or low and what the procedure will be.....
I too have struggled to find much info on the techniques used on a transsphincteric fistula, infact if it wasn't for this forum I would know even less!

I will get as much info as I can tomorrow!

Take care all, Sazzle xx
 
lourosa71 said:
I am new to this group and am thankful to have the opportunity to hear from others who have experienced similar problems. I have learned found several tips which have really helped me over the last two weeks. I have a high transphencteric fistula for which I had a cutting seton placed two weeks ago..
Click to expand...
Hope the cutting seton works for you. One of my fistulas is also a transphincteric
& the surgeon had recommended a cutting seton procedure. However, when the GI confirmed a Crohns diagnosis it was decided to retain draining setons rather than proceed with cutting setons. As I understand Crohns patients may have more challenges healing from cutting setons. Please keep us updated.
 
Frustrated! Spent 3 days in the hospital with partial SBO. No surgery needed and things are moving but apparently between fistula/abscess, iron for deficiency/anemia and adhesions I have a real challenge now. Saw the surgeon yesterday and didn't want to place seton in the office. May need 2 or more extensive surgery. Scheduled in 2 weeks. Surgeon talked about doing a flap down the road. Not too familiar. Any advice?
 
I think what they're talking about doing is another fistulotomy then... I know some members on here have had Flap surgery, but surgeries to artificially close fistulas are rarely ever successful according to my GI. My father had three himself and they never worked, and it eventually closed on its own. Mine has also been closing from a combination of Humira and 6mp, and all drainage stopped within a month of weekly Humira injections.
 
Max, I just had 3 setons removed and had the flap done on July 1st. This Tuesday will be 4 weeks out. Pain wise, this week, it just started feeling better where I can pretty much walk around as much as I want without feeling the need to lay down. I do have some drainage, although I'm not sure if it is drainage, or leakage from the wound. I have an appointment this afternoon with my surgeon so I'm hoping he will shed some light on how I'm doing! Fingers crossed that the flap was successful!
 
Justbreathe8...definitely hope your flap was successful. I know it's hard to think positive with the amount of time all this takes so I am sending good vibes your way. I've been dealing with this for almost 2 years and I'm so over it! Not looking forward to the next surgery but something has to work eventually.
 
Thanks! Yah, it's been a little over a year for me, and the flap was my 5th surgery so I'm totally over it too!! Praying so hard that this was my last surgery! I hope things get better for you very soon! How many surgeries have you had so far?
 
So far I have had a seton placed and about 6 months later a plug surgery which didn't work. Now I have a tunnel going from the original abscess where the plug is to a new abscess. It sounds like I will probably end up with 2 setons and then another surgery later once all infection is under control. Setons scheduled for Aug 7. Currently recovering from Partial SBO and supposed to remain on Flagyl til then. Unfortunately having a reaction to Flagyl now, neuropathy in leg. Unbelievable!
 
Ugh! It's never ending it seems like!! Well I wish you the best! And best of luck on the 7th! I hope that is the beginning of the end for you!
 
KarlieK said:
Hello I am new to the forum. I have had crohns for 8 years now and just finally reached remission! I have had a seton for the last 2 years. Mine seems to bleed off and on, and drains regularly (more after a bowl movement). I was just recently in for surgery the plan was to remove the seton and place a fistula plug with an advancement flap. I was unable to have the surgery because of a bad infection. The surgeon was able to widen my fistula tract and it helped relieve some of my daily pain and it also seemed to have stopped the bleeding that I was having. I see my surgeon again on Tuesday. I am really just confused if I should try the surgery again or just keep the seton,
My husband and I are really struggling with what to do. Any advice would be amazing. Thanks!
Click to expand...

can you explain what people mean by remission please?
 
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
 
hi MrsW I have one but no surgery. Too many scary stories about failed surgeries I am not brave enough to try. You can PM me anytime
 
Hi everyone, i had two setons placed about 3 weeks ago and started feeling better. Then a few days ago was feeling sick again and noticed yesterday a small blister looking thing right next to the seton where the cut is. Has anyone else with a seton had this is it normal or another abscess forming?
 
Hi everyone. I am so stressing! I went to the CRS this week who told me that things were progressing well with the cutting seton. I was elated! Great news! Then, shortly thereafter, the awful happens. I see a new opening just distal to the fistula/seton tract that was created by my CRS. It's draining. I think, maybe this is just part of the track, an extension? If the internal opening of the fistula is healed eventually by the cutting seton, then this new tract will heal too. Right? Could/ would one do a cutting seton twice? Seems to me the risk of incontinence would increase significantly a second time around? I don't know though. I guess I will just have to wait for the seton to work it's way out and see if it heals. The CRS said that there could be a sinus tract which formed? After the cutting seton was placed, it didn't drain for the first few days. Instead, I got an abscess distal to the seton. It was quite painful but got much better quickly when it started to drain. I thought it was draining from the seton/fistula tract my CRS made but wasn't completely sure that there wasn't new opening in the skin where it drained. However, if it did, it healed quickly and I could only see drainage from the seton. I am quite intimidated reading about all the surgeries most of you all have suffered though. Thank you all for listening,and being here.
 
Welcome to a few of you! My current seton seems to be doing well. A little concerned I have had minimal drainage for the past 24 hours??

My body calways has more issues with my period. Anyone else?
 
Yes! I was wondering if I was the only one. Seems like the pain increases and it gets bigger at that time of the month. Getting potentially 2 setons next week. Had been on Flagyl and Cipro until reactions to both recently. Abscess seemed much better and smaller until today. And now painful and getting bigger. Leaving for vacation Friday and was praying to get through it without problems. Oh well...
 
A number of people on here say that their symptoms seem to get worse when they're menstruating, so you're definitely not alone.

Minimal drainage isn't a bad thing -- it just means there's less bacteria to drain. As long as your seton is in it's not like it'll close up, either, since that's preventing it from happening. Once your fistula stops draining entirely for a period of time (maybe a month or two) you can probably consider getting your seton taken out, even. That's what I did, though I also had an MRI to confirm my abscesses were completely gone.
 
Maxwelljax said:
Yes! I was wondering if I was the only one. Seems like the pain increases and it gets bigger at that time of the month. Getting potentially 2 setons next week. Had been on Flagyl and Cipro until reactions to both recently. Abscess seemed much better and smaller until today. And now painful and getting bigger. Leaving for vacation Friday and was praying to get through it without problems. Oh well...
Click to expand...

Is there anything you can do? You don't want your abscess to get worse while you're away... are you on any medication for it or your Crohn's, now that you're off the Flagyl and Cipro?
 
No antibiotics now. Had to come off of both. But I'm on Remicade and Entocort. Next infusion in 2 weeks. I've been here before. Damn thing inflates and deflates at will. So many issues related to this. Spent 3 days last week in hospital with partial SBO. But I've been much better the last few days. I am determined to make this trip and nothing is going to stop me. Headed to Key West to relax and decompress and I refuse to let Crohns interrupt that lol.
 
missybee said:
Hi everyone, i had two setons placed about 3 weeks ago and started feeling better. Then a few days ago was feeling sick again and noticed yesterday a small blister looking thing right next to the seton where the cut is. Has anyone else with a seton had this is it normal or another abscess forming?
Click to expand...



Missybee, I am sorry to hear. I am currently in the same situation as you are. I do not know the answer but I agree that a new opening/blister is quite disconcerting! I will keep you in my thoughts an let us know how it goes.
 
My abscess definitely gets worse with my period and i get mine every 3 weeks. :-( is so good to have all you guys to talk to.
@Maxwelljax ..im also going on holidays in 2 weeks on a cruise, im so scared but i also really want to go. Lets hope we both get a break for a little while atleast just to let us enjoy our holiday!
@ lourosa - thank you xx
 
justbreathe8 said:
Max, I just had 3 setons removed and had the flap done on July 1st. This Tuesday will be 4 weeks out. Pain wise, this week, it just started feeling better where I can pretty much walk around as much as I want without feeling the need to lay down. I do have some drainage, although I'm not sure if it is drainage, or leakage from the wound. I have an appointment this afternoon with my surgeon so I'm hoping he will shed some light on how I'm doing! Fingers crossed that the flap was successful!
Click to expand...

I hope the op was successful for you and is good that your pain is subsiding xx
 
Thanks! I went to the dr last Friday and he did an exam and I felt no pain while he was doing it so that's good. I still have the drainage/leakage though but he said that's part of healing. So we will see. I go again in 2 weeks. Thanks for checking on me! :)
 
Maxwelljax said:
No antibiotics now. Had to come off of both. But I'm on Remicade and Entocort. Next infusion in 2 weeks. I've been here before. Damn thing inflates and deflates at will. So many issues related to this. Spent 3 days last week in hospital with partial SBO. But I've been much better the last few days. I am determined to make this trip and nothing is going to stop me. Headed to Key West to relax and decompress and I refuse to let Crohns interrupt that lol.
Click to expand...

I didn't respond well to Flagyl / Cipro either. Antibiotics never seemed to help with my fistulas but Remicade did.
 
Nancye50 said:
I'm thinking of having a mirena placed to lessen the issues with my period. I've had one before without issues.
Click to expand...


I've heard really good things about IUD! Although doesn't it give you really bad cramps at first?

I'm on depo-provera which actually stopped my period entirely now (although it's temporary as long as I'm on the medication), and considerably lightened it beforehand. I don't get cramps or anything from it anymore, either.
 
I was eight weeks post partum when I had my last one put in. I don't remember cramps but I did have bleeding & spotting for six weeks!
 
Hi guys speaking of periods I havnt had one since March and I been tested for menopause is that normal I was told I have Crohn's at the start if the month when I had bad cramps in my tum I'm on pred now 25 Mgs just curious don't get me wrong I'm don't mind not getting it lol oh according to the test I'm not in menopause either
 
I'm sorry leezapeza yes. I was talking to you. Don't know of there is anything specific related to Crohn's that effects a period but I did read Remicade did.
 
It could be the last time I had it was in March and I had it fir 3 weeks solid I thought it I was gonna die from blood lose lol
 
Ok, I did not have time to read every single post on here, but I will share my experiences. I had an Anal Fistulectomy in 1992, I was 32 years old. ( I am now 54 years old ). No one told me what caused a fistula and I did not ask any questions. I had no idea what caused it. I did not like the doctor that did the surgery. I should have asked more questions and I should have gotten more information before the surgery was performed. I started having diarrhea in 1997. I did not know what was causing the diarrhea. I went to see some Internal Medicine doctor that performed a Lower GI and a Sigmoidoscopy. He never performed a colonoscopy. As far as I can remember ( since it was a long, long time ago ) they told me I had IBS and sent me on my way. I got sick of going to doctors after that and I just lived my life with diarrhea, discomfort and social anxiety. Then I saw a Gastroenterologist in 2006 and had a colonoscopy and he diagnosed me with Ulcerative Colitis. He gave me Asacol and then Lialda. ( My old PCP had also given me something called Cholestyramine Powder, and for some reason this medication helped control the diarrhea symptoms, but not completely of course.) In 2002
and 2009 I had rectal abscess surgeries. Until I started looking up stuff on the Internet I did not even know that my abscesses were related to the Ulcerative Colitis ! I know so little about my illness ! This site has really educated me. I just wanted to share that I had a fistula and rectal abscesses.
 
Welcome to the happy club! This sight is a wonderful place. I've gained so much understanding here and it's so nice to communicate with others going through the same stuff. I have 2 peri anal abscesses and fistulas. One was plugged unsuccessfully 18 months ago and now I have a new track from that leading to another abscess. Having setons put in next week :( Not happy about it but doubt Remicad will ever work with them. Love Crohns! In the mean time gearing myself up with a weekend excursion to Key West. Love the sunsets and the chance to decompress.
 
I'm thankful the fistulotomy is healing well.I find the setons annoying when riding my motorcycle or getting in and out of a vehicle,not painful.Just uncomfortable.

Sounds like a petty complaint,I know.On the great scale of 'what really sucks',moaning about your butt discomfort while riding a motorcycle doesn't even make the list.It's just annoying.

It's been four weeks since the draining setons were placed.Will they get less sensitive with time? My colorectal surgeon says I'll have them for a year at least,and then maybe take out one.

I suppose how much you drain is an 'everyone is different' thing like everything with IBD.The first day or two I had to wear panty liners I drained so much.Since then I have very little drainage.I carry small sterile dressings with me and only need them if I am going to be seated for any length of time.

Is not draining much a good thing? The fistulotomy site and setons appear to be healing well.I feel no pain,just discomfort.

There is a special place in Heaven for partners who assist when mirrors just can't let you see the whole picture.Try and get that picture out of your head,sorry for that.:)

I see my surgeon in October and every three months after.Hopefully the Remicade will help and there will be no need to see him sooner.Next Tuesday will be infusion number two.
 
I had my setons in (3) for 8 months. I just got them out at the beginning of July. The discomfort def lessens but for me it never completely went away, but as time went on I thought about it less and less bc it just became part of my life. My husband saw my butt at its worse bc I needed him to tell me if I needed to go to the hospital lol. He hasn't seen it since and I feel like I need to show him so he doesn't have that bad image of me forever!! Hahaha I'm like, it looks so much better now! Lol. So I know the feeling of when the mirror just isn't enough! I think not draining much is a good thing because that means its calming down and there is less infection there. My drained the whole time I had them, but it got to a point where it was only a little bit.
 
dave13: That it isn't draining much sounds good to me! Since it draining means it's getting rid of the bacteria that collected in the abscesses. Mine were really bad and drained heavily until I went on Humira, which stopped it completely within a month. Once it stops draining for awhile, I'd recommend getting an MRI to see if abscesses are still present, and if not you can probably get your setons removed. That was what I did!
 
Hi everyone... I had an abscess drained about 5 months ago.. I have had a small fistula that I will be getting surgery on soon.. but I am getting a colonoscopy first.. I am so nervous the prep kit is going to make my fistula flare up and im going to be in a lot of pain! Has anyone had a colonoscopy with a fistula?
 
Yes! I was terrified when I had to so the prep for a colonoscopy! I was in extreme pain every time I had a BM. I told the surgeon that and he postponed the colonoscopy till I felt better. Then when i finally had one, the prep wasn't as bad as I Thot it would be. I posted the same question on here when I had mine. People suggested a barrier cream which I didn't really use. They also recommended holding something over the fistula hole and it definitely helped with the burning. My CRS scheduled my colonoscopy on the same day as my surgery. That way if the fistula got messed up, he was going in there to clean it out anyways. That completely helped to ease my worry. Perhaps you could ask him if he could schedule both on the same day?
 

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