Fistulas, Fissures and Abscesses Support Group

Crohn's Disease Forum

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Hi all. I've been told I have a "small" abscess snuggled up to the back side of the cecum and "pockets" of infectious fluid in the small intestine near there. I was on oral antibiotics for over a month (Flagyl and Cipro. Then Flagyl and Levaquin). And now I'm beginning week 5 of at-home IVs of Flagyl and Invanz. I had relatively mild symptoms for a few years... off and on Budesonide (Entocort) since April of 2012. Now I'm taking 9mg every day since August of 2013.

But I have a nest of a mess in the ileocecal area and now I'm scheduled for surgery next week. The doctor said some of the small intestine will be removed, as well as the cecum and appendix and maybe part of the ascending colon. I've had 4 CTs in the last 3 months. I don't think they've seen any evidence of fistulas or fissures. But I don't suppose we can rule anything out until he gets in there.

This is all new to me and I'm not even sure what questions to ask the surgeon. I have a meeting with him a few days before surgery to go over details and ask any more questions. He has a great rep. a specialist in colon surgery and I do trust him to do the best he can for me and I am thankful for that.

Right now I'm exhausted. Sleeping a LOT. The winter has gone by in a sleepy, pajama-clad blur. And, to be honest... I'm kinda scared.

Thanks for listening!
 
I know Stelara isn't approved yet. Probably another year or two but I wonder how it is in this area. Hopefully as potent as Remicade.
 
My experience is that I get a flare before my next dose. That may be about day 75 out of a 90 day dose regimen.

So, at least for me, a 60 day cycle would be better. My dermatologist is not at all interested in reducing the cycle, so I am stuck at 90 days. The best I can do is make sure it is 90 and not 91 or more.

I have been on Humira and then Stelara, but still ended up getting stricture at my ICV that has only a 3mm opening. I also have ulceration at the ICV. So, it isn't a 100% for me. My GI will likely put me on something else this week.

nogutsnoglory said:
I know Stelara isn't approved yet. Probably another year or two but I wonder how it is in this area. Hopefully as potent as Remicade.
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I have only been on stelara for about 3 months (8 week dosing) without much effect on fistula. A big improvement on Crohns symptoms with less diarrhea and less frequent BMs.
 
Carbuncle
Maybe with getting your Crohn's into a remission you will see improvement with the fistula?
We were told that my son's fistula will never heal without remission. He currently has 2 setons, & I'm praying the Remi will kick in and do the job.
Keep us posted on your progress!
 
Thanks, I will keep my fingers crossed. Cimzia closed fistula quickly (1 month) but, it never went away completely.
 
Tedcin said:
I had a bad reaction to the remicade when it came out many years ago that's why I picked the humira .But I guess if the Humira doesn't do it I would try the remicade. I have taken my share of Flagyl . Yuk ! I have made trips back in the day to Boston ( 2 hours away) . Big fancy hospitals ! They told me my doctors were doing everything right and hang in there. A new set of eyes on heatlh issues is never a bad thing . I never wish someone luck on doctor visits I kind of go with the thought of I want a smart Dr not a lucky one ! I did a major diet change 7 months ago and I will say that it helped alot with My bathroom trips and most certainly with arthritis. I guess I would of given up donuts a long time ago if I new . have a great visit to UVA ! .
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If you do visit Boston again, I highly recommend my GI at BIDMC. Dr. Jacqueline Wolf.
 
carbuncle said:
Thanks, I will keep my fingers crossed. Cimzia closed fistula quickly (1 month) but, it never went away completely.
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Good to know. I stopped Humira since it wasn't closing my fistulas and I didn't need it for symptoms (Asacol and recreational MM do that for me). If My fistulas become a problem (right now they are running along the inside of my bum not bothering me) I will ask to try Cimzia rather than go back on Humira.
 
Hi. Lurker that finally joined. Figured i would subscribe to this also. I have had 3 fistula and 3 abscesses since last year. 2 and 1 were surgically corrected but they came back in another form this year. Surgery again. Month ago and now I wonder if I have another fistula. One of the abscess drain scabs swelled up a couple weeks back and burst pus out. Multiple CT sans don't show a fistula but I swear something is there as I keep seeing what looks like pentasa pellets in the drainage.

surgeon and hospitalist feel it is debris from surgery since there was a fistula there prior that was draining bowel contents
 
Welcome jamesd. Have you considered Remaicaide? Many here have had great luck with it. I'm hopeful. Infusion # 4 is tomorrow. So far fistula doesn't seem much better but it can take a while I guess. I'm back on Flagyl. Seems to be helping. I too had surgery. Last year. Didn't help. Oh and insurance denied payment because it was considered experimental. Appealed it twice and denied. Apparently only considered experimental by Fl blue. That's after being pre certified. Go figure. Anyway you might want to consider Remicade. Good luck and hang in there.
 
aimeey17 said:
I hear ya, no fun! Ive seen on this site and then double checked and found out that remade is twice as effective as humira for closing fistulas. I was on it years ago for uc and my body build up resistance against it. now with fistulas they have also put me on humira and just recently a flagyl cipro combo. Im not sure where you are but I know my specific area of Hampton roads va doesnt have the best gi docs so im getting a second opinion at the uva center for digestive health hoping they'll have some newer better ideas.
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Hi I've been on flagel/cipro since August and humira since december 2013 ever other week for 4 months. I had suggested remacade to my GI he said yes but that has more side effects. That's when my GI changed humira to ever week and continue the flagel/cipro then added 6mp for six weeks if no improvement then we switch to remacade. But I started to feel better. Saw my surgeon he said that if I continue to improve stop the flagel. So far so good I'm still draining from my setont but less and pain has not stop but very manageable. Patients is needed with this issues no magic pill or shot from what I've seen and read. Sits baths is the best meds!
 
Andy K said:
Hi all. New to the group. I'm 34, diagnosed with UC when I was 19 back in 1999. I had severe problems for a couple of years, and then I had the J Pouch surgery in 2002. Since then, they have switched my diagnosis to Crohns since I have had some perialanal disease/fistulas/abscess problems. I know I am a rare case to have Crohns and the J Pouch. I have no other symtoms or problems other than the fistula and abscess (drained four times over the last 12 years).

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

Thanks! And good luck to everyone. I really feel for everyone!
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Hi Andy I also have UC since 1990 and 96 j-pouch for the last 17 years chronic pouchitus flip from flagel to cipro until last year this fistual attach me and kicked my butt. Two surgeries latter and setont latter my surgeon feels I have crohns. I'm not yet convinced this is correct for no one can tell one from the other. There isn't a test that I know of that can say this what you. All I know is I've been a pain in the ass for 24 years. Trying to forward. Lol with these young kids getting pierced on there eye brows, nose, lips, nipples but I don't think got one of these blue wired piercing butt. All you can do laugh it off or it will bring you down. I'm all looking at as half full. Kevin
 
Hello All,
Just writing to share my experience with my fistula that has been so resilient and unpredictable.

Twice in the last 4 months, it seemed like it was almost healed and then started getting worse again. First, when I started Humira and my Doctor was so excited that I was ready to have my seton removed. The fistula started getting worse again before I could even see the surgeon. After doubling the 6MP dosage to go along with Humira, I started seeing improvement again over a period of two months. My doctor saw me a couple of weeks ago and said that it seemed like the fistula was fully healed. I then scheduled an appointment for 04/22/2014 (tomorrow) with my surgeon to get the seton removed. Since 1 week, the fistula started getting worse all over again pretty much to the state it was several months ago and I experienced a severe debilitating pain over the weekend.

In addition to the literal pain, this pendulum like hope and distress is bringing me down. Wondering if anyone had such cycles of improvement and deterioration and what the eventual outcome was.

Thanks in advance.
 
idlebrain said:
Hello All,
Just writing to share my experience with my fistula that has been so resilient and unpredictable.

Twice in the last 4 months, it seemed like it was almost healed and then started getting worse again. First, when I started Humira and my Doctor was so excited that I was ready to have my seton removed. The fistula started getting worse again before I could even see the surgeon. After doubling the 6MP dosage to go along with Humira, I started seeing improvement again over a period of two months. My doctor saw me a couple of weeks ago and said that it seemed like the fistula was fully healed. I then scheduled an appointment for 04/22/2014 (tomorrow) with my surgeon to get the seton removed. Since 1 week, the fistula started getting worse all over again pretty much to the state it was several months ago and I experienced a severe debilitating pain over the weekend.

In addition to the literal pain, this pendulum like hope and distress is bringing me down. Wondering if anyone had such cycles of improvement and deterioration and what the eventual outcome was.

Thanks in advance.
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I'm no expert in this but from what you've described this track record I'd leave the seton in. Can you even imagine if it was removed what would happen. How long has this seton been in?
My surgeon told me for ever but it might heal and some can have them removed. I'd rather look to this as forever then keep fooling my self that just a little longer it will be gone. I could live with in as long as it stop draining. I can share with you about the pain. I've been wearing these women pad for 8 months only in the last 4-6 weeks has it slowed down even to a Trace then wam my pads all blood leaking in my briefs. It's a roller coaster ride for sure.
When I read other stories this always humble me quickly.
Are you doing the sits baths?
Kevin
 
Hey Kevin,
Thanks for responding and sharing your story. I just saw the surgeon and was prescribed a 10-day antibiotic course. He empathized but sort of alluded that such is the nature of this condition. He said it is a granulated tissue and is inflamed. So seton is staying where it belongs :) .

I have been taking sitz baths. Not sure where I am headed now but will see GI in a couple of weeks. Thanks again.
 
Fistulas come and go, bad to worse. Setons work on a small percentage scale. I think the USA needs to implement some eastern techniques, ie: diet, especially diet, salves of organic components, fistula plugs etc. Best advice, research the hell out of your issues and sort out the shit(no pun). I have had chronic peri-anal disease my whole life and the more surgeries I had, the fistula spread. There is no cure but you can bring the body to a state of balance , again diet, probiotics etc meditation and yoga doesn't hurt either best of luck.
 
HI all I posted in the surgery forum as well - but I do not have Crohns.

Hi all,

I am new here. I had an abscess wrongly diagnosed as a thombrosed hemmy, 2 months ago. Long story short I had the abscess drained 6 weeks ago, it was a very small perianal abscess. The doctor never really told me the healing time. 2 weeks ago it was itchy, now it kind of hurts after a bowel movement. I have my husband look at it and it's looking better, the hole is closing but hasn't completely closed. I am just wondering how long it takes to heal. And how would I know if I have a fistula?

Thanks in advance everyone!
 
Healing time varies from individual to individual. If you have a fistula you will likely experience pain and fever but ultimately the best way to check is MRI.

Also, just because you don't have Crohn's doesn't mean you don't have a fistula. There are other scenarios and illnesses that make you prone to them.
 
Thank u! I guess I am just looking for some time frame in healing... And when I would know if I had a fistula.
Thanks for responding!
 
My daughters fistula is still healing, she's on Remicade. Since it's so moist in that area, she gets rashes so I've been applying an ointment to help with that. Well, tonight she showed me a red spot on her other butt cheek that she said feels like the first abscess she had (which turned into the fistula). I looked at it and it was just a small red bump, maybe a pimple. What's the difference between a pimple and an abscess in early stages? I'm so worried she's going to be battling another one at the same time!
 
If she has a seton, it may be aggravating the area on her opposite cheek and causing some irritation. That was something I experienced often. I also found I would sometimes feel a sensitive spot in my opposite cheek similar to my original abscess, but then I'd check again later and it would be gone. So it may also be something temporary like that.

The best way to check for sure is to get an MRI, but otherwise keep an eye out to make sure your daughter doesn't get any fevers since that may mean there's another. While she's on Remicade she hopefully shouldn't get more, though. Is she still on antibiotics? I was on Cipro/Flagyl for eight months, though that's a bit longer than I've heard for most people.

Also, a potential tip: I got a squirt bottle to help clean the area with during the day and also after bowel movements, which helps with some of the drainage so it's not quite as moist. :)
 
theOcean said:
If she has a seton, it may be aggravating the area on her opposite cheek and causing some irritation. That was something I experienced often. I also found I would sometimes feel a sensitive spot in my opposite cheek similar to my original abscess, but then I'd check again later and it would be gone. So it may also be something temporary like that.

The best way to check for sure is to get an MRI, but otherwise keep an eye out to make sure your daughter doesn't get any fevers since that may mean there's another. While she's on Remicade she hopefully shouldn't get more, though. Is she still on antibiotics? I was on Cipro/Flagyl for eight months, though that's a bit longer than I've heard for most people.

Also, a potential tip: I got a squirt bottle to help clean the area with during the day and also after bowel movements, which helps with some of the drainage so it's not quite as moist. :)
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No seton, her surgeon basically just opened it, let it drain and left it to heal (this was back in November). Since being on Remi its almost healed after a year. I never saw the first abscess, she was too embarrassed to tell me, but by the time she did it had popped and was a giant crater like bump the size of a dime. This is just a little bump, maybe from all the ointment clogging her pores? Thank you for the idea of the squirt bottle. She takes a shower after every bowel movement and I don't think she dries it enough. No more puss, just moisture. She has an appt with her pediatrician today, so I'll have her check it out.
 
I hope that's all it is, yes. I know I still occasionally get pimples there despite trying my absolute hardest to keep things as clean as possible. So it can happen. :p

Yeah, the squirt bottle works well in place of a shower sometimes. The skin might also heal in a way to compensate for it being a moist area which isn't unusual either. Hope it goes well with the pediatrician!
 
Just now subscribing here. My recent CT showed my small abscesses have resolved but now I have one, possibly two, bowel to appendix fistulas. I've only been dealing with this since early Feb. I was on Imuran for less than two months and am now going to Humira.
 
Has anyone else has fistulas with appendix? I've had a lot of pain today. It usually lasts one day and is better the next which I hope is the case now but I just worry about continued complications.
 
Hi Nancye50,

Mine connects to lower colon but I understand they can connect to any other internal organ.

Ciao, Carbuncle
 
Hi everyone,

I haven't posted in a while, but I was diagnosed with two peri-anal fistulae. I had a seton that my doctor placed in November. I've been on Humira since February. Without being too graphic, can anyone describe what I should be looking for in order to know if my fistulae are healing such that the Seton can be taken out? Feel free to private message me if the details are too graphic for public consumption. Thanks in advance.
 
ey218 said:
Hi everyone,

I haven't posted in a while, but I was diagnosed with two peri-anal fistulae. I had a seton that my doctor placed in November. I've been on Humira since February. Without being too graphic, can anyone describe what I should be looking for in order to know if my fistulae are healing such that the Seton can be taken out? Feel free to private message me if the details are too graphic for public consumption. Thanks in advance.
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If it is ok with you I really prefer the graphic details! I am scheduled to go through the same process as you. The "no holes barred" details of this forums what I appreciate & need the most : )
 
I personally just started to feel less pain & see less drainage. I just had a scope done last week by my gi & he said he was looking for inflammation. If there's no inflammation & everything looks good I can go ahead & have it taken out & a "plug" is going to be placed in.
 
Be very careful with plugging and do your research. I had plug done Feb 2013. This was after having a seton for several months and assurance there was no sign of active disease. It didn't take. Drainage around it continued and fistula continued in a different direction. Now I have a new abscess further up. I started remaicaide in Jan and that seems to have made it worse or at least exacerbated the abscess. To make all of this even better my insurance company pre - certified the procedure And then denied payment later because they considered it investigational. Two denied appeals later and I get to pay it. My advice is talk to everyone you can before you do surgery. And make sure your insurance company really will pay it. I am hoping once my current abscess clears remaicaide will close fistula.
 
In my case, I had stopped getting drainage entirely and didn't have any pain except for irritation from the seton. My GI ordered an MRI to check for inflammation/infection and then when there was none, my surgeon removed the seton.
 
My GI also doesn't believe in plugs or most of the surgeries for fistulas because he says if you try to plug it artificially, it will just branch elsewhere like Maxwelljax said.
 
I'm wondering if that's why my GI isn't removing my appendix since that's what my fistula is to. Friends/family seem to think that's the obvious course of action.
Also, I prefer to hear the graphic details here too. I've had it fairly easy so far with this disease but am still wanting to learn what I can for future reference.
 
I will research the plugs today. I'm supposed to be having that and a small bowel resection done in a few weeks. I definitely want this Seton out though, its pretty irritating to me.
 
Alright... in the interest of graphic details, I am still having a significant amount of drainage and occasional blood. My colo-rectal surgeon cleared me for all activities. After working out, I notice even more drainage. Sounds to me that my hopefulness is turning into hopelessness. However, the pain I had before is completely absent except for occasional irritation from the seton. I have an appointment with my gi on Monday to see if the seton can come out or if I'm going to continue on Humira.
 
ey218 said:
Alright... in the interest of graphic details, I am still having a significant amount of drainage and occasional blood. My colo-rectal surgeon cleared me for all activities. After working out, I notice even more drainage. Sounds to me that my hopefulness is turning into hopelessness. However, the pain I had before is completely absent except for occasional irritation from the seton. I have an appointment with my gi on Monday to see if the seton can come out or if I'm going to continue on Humira.
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Can you request an endoanal MRI to asses your current roadmap of fistula tracts? Perhaps there may be other fistula tracts that may have possibly been missed during an EUA?
 
theOcean said:
My GI also doesn't believe in plugs or most of the surgeries for fistulas because he says if you try to plug it artificially, it will just branch elsewhere like Maxwelljax said.
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I am researching the fistula plugs and so far what I have read says the success rate is only 13%. How long did it take for yours to close all the way after having you seton taken out and no plug put in?
 
sfgirl said:
I am researching the fistula plugs and so far what I have read says the success rate is only 13%. How long did it take for yours to close all the way after having you seton taken out and no plug put in?
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I've had mine out for just under three weeks, and it's almost completely closed now. Just a few more days, I think. I've just been on Humira for it, and then initially Cipro/Flagyl to make sure the infection itself went away.
 
Wow that is great! I'm on remicade and have been for a while but my fistula didn't go away that's why he did the seton. Actually it tunneled deeper all the way to the muscles in my rectum and caused terrible spasm like pains. The pains are better so I think when I go Monday I'll just ask about no plug.
 
Oh gosh :( Mine is peri-anal but apparently it went so deep that it almost reached my stomach, so I can completely relate. It was so painful. I was on Remicade initially but was allergic to it, then switched to Humira which worked much better. Since you're probably not allergic to it, Remicade will hopefully be really good to you!

Are you still getting any drainage at all? My GI wanted me to wait until it wasn't draining anymore, and then did an MRI to make sure there was no infection left before letting me take out my seton, since he wanted it to be as safe as possible.
 
To your stomach! Oh gosh that sounds painful. I haven't seen any drainage in about a week or 2. I got a colonoscopy and he said no infection just a little inflammation but he thinks its irritation from the seton. There is also one forming in my small intestine but it hasn't tunneled far.
 
Yeah, irritation from the seton wouldn't surprise me. Mine would sometimes bleed for days because of seton irritation, and the fact that I haven't had it once since getting the seton out kind of confirms that.

My GI wanted me to wait to at least have a month without drainage just to be safe, but you can talk to your GI and see what they're comfortable with. :)

And oh dear! Not another one. Is your Crohn's at least under control?
 
My Crohn's is kind of up and down some days I feel pretty good then some days I can barely even get out of bed. My gi told me the only problem he is seeing so far is that there is a stricture in my small intestine which makes it only about the size of a pin head where the small and large intestine connect and that's also where the fistula is forming. He says it looks like my body is trying to make its own pathway.

I've had this darn seton for 7 months now and it's really irritating so I hope its getting close to time to have it removed.
 
I had mine in for eleven months, so I feel you! It made a world of difference when I got mine out. I have a thread here where I've been tracking my progress since getting it removed, talking about what it's like to get removed, etc., if you're interested in that!

And oh jeez, a stricture... that would possibly explain it then. I guess you're just eating low-residue for now? You're on all the right medications for treating Crohn's, at least.
 
Yes I definitely want to read!

I've been trying to do all low residue eating but I do cheat from time to time :) I will be having that taken care of soon and I'm pretending to be calm while very nervous on the inside. I hope I don't have to go 11 months with this seton but I guess if it will ensure it heals it's worth it.
 
I get a lot of fissures, but I'm never sure whether it's from Crohn's disease in my anus, or just the stress on the tissue of having so many BMs every day.... makes BMs feel like I'm crapping broken glass :(
 
theOcean said:
Oh gosh :( Mine is peri-anal but apparently it went so deep that it almost reached my stomach, so I can completely relate. It was so painful. I was on Remicade initially but was allergic to it, then switched to Humira which worked much better. Since you're probably not allergic to it, Remicade will hopefully be really good to you!

Are you still getting any drainage at all? My GI wanted me to wait until it wasn't draining anymore, and then did an MRI to make sure there was no infection left before letting me take out my seton, since he wanted it to be as safe as possible.
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what are the symptoms of an internal fistula? I have a lot and I don't believe they are bothering me but lately I've been getting more dull constant pains in my stomach and in my gut.

They never seem to hurt when I'm at the doctors and I cant give any real descriptions for her except vague areas of vague discomfort. . . :ybatty:
 
Moriati said:
I get a lot of fissures, but I'm never sure whether it's from Crohn's disease in my anus, or just the stress on the tissue of having so many BMs every day.... makes BMs feel like I'm crapping broken glass :(
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is THAT when you know you have a fissure? The crapping glass feeing?? LOL I get it once in a while. I sort of wish I didn't know that. LOL
 
mish2575 said:
what are the symptoms of an internal fistula? I have a lot and I don't believe they are bothering me but lately I've been getting more dull constant pains in my stomach and in my gut.



They never seem to hurt when I'm at the doctors and I cant give any real descriptions for her except vague areas of vague discomfort. . . :ybatty:
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I couldn't sit or even comfortably lay down. I couldn't really walk, and even sitting on the toilet was so painful. The pain was enough to make me cry and if anyone would even come near it or touch it I would shout. It was the most painful experience I ever had.

I became totally immobile and because it was so bad and perianal, it also caused me to get completely backed up because I had so much inflammation. My surgeon was amazed I could still pass anything at all when she saw me, and said I looked like I was dying.

I also had fevers and night sweats, my hemoglobin was at 50... I was a mess.

I'm not sure what ones between loops of intestine are like, or abdominal ones, either. But that's how bad a perianal one reaching almost to my stomach was.
 
Hi everyone!
I have an anal fistula, and I'm hoping it heals with Humira. After taking my starter dose of Humira 3 months ago it seemed as though it was healing and it had stopped draining, but after injecting Humira biweekly for the past 2.5 months, it's not working the same, and it is starting to drain again. I saw my GI today and he said that we will up my dose to once a week instead of biweekly. Fingers crossed.
 
Have you tried Remicade? It has the highest rate of success, although I'm still waiting. I have had fistula for 1 1/2 years. Surg plug didn't work. I have a new abscess behind plug. GI feels that I'm immune suppressed by Remi that this left me at risk. Now taking Cipro and Flagyl and he plans to double remi dose next time depending on CT results from today. It doesn't work for all but literature shows a much greater rate of success. Would talk to your GI if you haven't already.
 
nicolemarie said:
Hi everyone!
I have an anal fistula, and I'm hoping it heals with Humira. After taking my starter dose of Humira 3 months ago it seemed as though it was healing and it had stopped draining, but after injecting Humira biweekly for the past 2.5 months, it's not working the same, and it is starting to drain again. I saw my GI today and he said that we will up my dose to once a week instead of biweekly. Fingers crossed.
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I inject with Humira weekly as well! It really makes a difference. Are you on antibiotics, as well?
 
nicolemarie said:
Hi everyone!
I have an anal fistula, and I'm hoping it heals with Humira. After taking my starter dose of Humira 3 months ago it seemed as though it was healing and it had stopped draining, but after injecting Humira biweekly for the past 2.5 months, it's not working the same, and it is starting to drain again. I saw my GI today and he said that we will up my dose to once a week instead of biweekly. Fingers crossed.
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As a Non-doctor I would suggest switching now. why go to a double dose after only 2.5 months? It seems to me that it just doesn't work well for you. There are other biologics that can work. Remicade, although a pain to do, works GREAT for most people. there is Cimzia and I think there is a newer one now too.


Good luck. :)
 
theOcean said:
I inject with Humira weekly as well! It really makes a difference. Are you on antibiotics, as well?
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I'm hoping it makes a difference. Right now I just feel like a guinea pig trying to find the right cocktail for me. I am not on any antibiotics, just the Humira. I guess my doctors are trying to see whats working and what isnt. Just a little stressful.
 
mish2575 said:
As a Non-doctor I would suggest switching now. why go to a double dose after only 2.5 months? It seems to me that it just doesn't work well for you. There are other biologics that can work. Remicade, although a pain to do, works GREAT for most people. there is Cimzia and I think there is a newer one now too.


Good luck. :)
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I have a friend that goes for her Remicade IV every week, I'm guessing if the weekly dose of Humira doesn't work, that's probably the next step.
 
nicolemarie said:
I'm hoping it makes a difference. Right now I just feel like a guinea pig trying to find the right cocktail for me. I am not on any antibiotics, just the Humira. I guess my doctors are trying to see whats working and what isnt. Just a little stressful.
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I'm sorry to hear that. :( I'm only on Humira now and it's been really effective for me, but I think the once-weekly injections are the important part of being on it.

As for the Remicade recommendation: because of how you can build antibodies to biologics I'd say to try doubling Humira first, and then if that doesn't improve anything, switch to Remicade. I was on Remicade before but was super allergic so it didn't help at all, unfortunately.
 
nicolemarie said:
I have a friend that goes for her Remicade IV every week, I'm guessing if the weekly dose of Humira doesn't work, that's probably the next step.
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WOW! really? Its been a couple of years since I was on Remicade. I thought they always started patients at every 8 weeks. I wonder how much she is getting every week.

Is it working for her?
 
mish2575 said:
WOW! really? Its been a couple of years since I was on Remicade. I thought they always started patients at every 8 weeks. I wonder how much she is getting every week.

Is it working for her?
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OOPS, yes she goes every 2 months for her treatment. :ybatty: I was typing without thinking.
She says Remicade really helps her though, she had 3 fistulas internally, and now they're all healed. She even looks better, like she got life back into her. I'm hoping by taking Humira weekly it will have the same effect.
 
theOcean said:
I'm sorry to hear that. :( I'm only on Humira now and it's been really effective for me, but I think the once-weekly injections are the important part of being on it.

As for the Remicade recommendation: because of how you can build antibodies to biologics I'd say to try doubling Humira first, and then if that doesn't improve anything, switch to Remicade. I was on Remicade before but was super allergic so it didn't help at all, unfortunately.
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I gave myself an injection this past Monday, and I'll do it again next Monday. I can't wait to start doing weekly injections. My biggest fear is this fistula not healing. I'm almost scared to go to my CRS because I don't want her to put the C-Ton back in (I don't even know how to spell it...seton?) When the C-ton was in, I was so depressed and it was SO painful. I don't want to go back to that! :eek:
 
Well, if the fistula tract has matured you don't have to worry about getting another seton placed! It was super painful for me, too. But hopefully your fistula will heal. Mine almost has and it's been three weeks since I got it removed while on weekly Humira. The time varies for everyone, though.
 
I've been on Humira for over 3 months and had a seton placed in January. I saw the colo-rectal surgeon yesterday. He did a scope and then removed the seton. For those of you who have had a seton removed before, any particular complications you can share so I know what to be looking for? Obviously, I'd like to avoid another abscess if possible so I want to pay close attention. Thanks in advance.
 
I had mine done as outpatient in the surgeons office. The only pain was the shot given to numb everything. That lasted maybe 10 seconds and then I felt nothing. The seton being there is uncomfortable so ask for a pain script. You will need it. Doesn't hurt constantly but it is irritating. Good luck and hang in there.
 
Hi, just joining this group and forum. I was diagnosed with Crohn's October 2013 but have had symptoms going back about 10 years. Because my Crohn's had been going on for so long without treatment I have a fistula (maybe two) and a phlegmon (which I believe is an abscess). I also have Ileitis. I am getting surgery next week to remove part of my colon on the right and left side and the ileum. Any advice or information would be greatly appreciated.
 
Welcome to the forum! Are you going to get your fistulas drained, or are you being put on any medications for them? Or are you getting part of your colon removed to see if that helps them subside a little?

I'm happy to answer any questions you might have about them or how to treat them, and I'm sure others in this group would as well. :)
 
theOcean said:
Welcome to the forum! Are you going to get your fistulas drained, or are you being put on any medications for them? Or are you getting part of your colon removed to see if that helps them subside a little?

I'm happy to answer any questions you might have about them or how to treat them, and I'm sure others in this group would as well. :)
Click to expand...

Thanks! The surgery is to remove the fistulas as well as the phlegmon and inflamed ileum. I was on Humira and antibiotics since January to try to heal the fistulas and phlegmon but it didn't work.
 
So glad to hear it @theOcean. I hope to have a happy story for the new subforum when I have a ct in a few months!
 
hi any body is having any treatment about to stop fistulas i m on azathioprin 100mg follic acid prednisolon 40mg mesalamine 2.4 gm
pl help me if u can
 
i had 3 doses of Remicade 300 mg on 0,2,6 weeks but still some sort of fistulisation is yet to be recover and also the cost of Remicade is also a problem any kind of economic assistance or management from support group or else
 
Hey everybody,

I was recently diagnosed with Crohn's Disease this January and have some questions. As of now the Crohn's is only located in my anus, i've had three surgeries since Decemeber to drain the abscesses that have formed and currently have two setons in place. I had four fissures at the beginning of everything but it appears that the Remicade has worked on them. I'm currently on Remicade every eight weeks and on the cipro/flagyl antibiotics 2x daily.

Anyways, I'm wondering if anyone else is/has had these same problems and if I could get some information on it. I'm curious as to when everything really heals, if you ever feel normal again, what it's like to live with these symptoms, etc. I've tried to do research but from my understanding having it in this area initially is pretty rare, so finding information is hard. Any kind of information on the symptoms would be more than helpful!

- Mallory A.
 
As far as the abscesses, I had one in 1992. A week and a half later after having it drained, I went downhill and besides having it drained they gave me intravenous drugs.

2
 
Hi everyone,

This is my first "Crohn's Support Group".

I was diagnosed in 2002 at the age of 13. I've had severe Crohn's for half my life now and I'm getting a little tired of the constant worry/struggle/daily obstacles. 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!! I have also, like most of you been on:

6MP
Lomotil (2 times a day)
Humira 40mg weekly (7 years, just stopped in June 2013)
Remicade (June 2013 till today! -10mg every 4 weeks)

About to get my first infusion of Entyvio tomorrow. I am very nervous since it is a brand new drug but i am hoping for the best since it works differently than the TNF Inhibitors.
Is anyone else on Entyvio?

Great to be a part of this. I really need people who know what I am going through to talk to...no one else REALLY understands.

:)
 
Hi CassyVS and welcome. Sorry your having problems. I've had lot of fistulas and they are awful. Not sure if it would work or be less expensive but I needed feminine pads to absorbe all the drainage.

I hope this clears up for you. Sending you my support.
 
Not sure if this will post in the correct location but thought it wouldn't hurt to try. In a nut shell.... Have been dealing with a fistula for 1 yr. it has been drained 4x followed by short term flagyl use. I currently use asacol (and have for 15 yrs) for my Crohn's and have been in remission until the fistula issue arrived.

My gi would like to have a seton put in. I am deathly afraid of that option as it looks like many continue to have a lot of pain from the seton. I also feel there has been minimal attempt to start with medication b4 surgery?

Will I be able to function with a seton? Walk for an hour? Go to my job?

Basically... Scared and feel draining the fistula, and a year of flagyl would be a better 1st step?

Difficult decision.
 
You should be able to function with a seton. I had mine in for almost a year and it was fine, but I was also on Humira which had stopped all drainage too. Setons also don't have to be permanent: you can get it removed. I'd recommend going on a biologic like Humira or Remicade if your fistula is persisting, because antibiotics on their own aren't enough. Seton also really helps it get rid of all the bacteria so it can heal properly and get rid of the abscess.
 
Thanks so much for replying. Were you able to work with your seton? You no longer have it because....
 
Suehelb said:
Not sure if this will post in the correct location but thought it wouldn't hurt to try. In a nut shell.... Have been dealing with a fistula for 1 yr. it has been drained 4x followed by short term flagyl use. I currently use asacol (and have for 15 yrs) for my Crohn's and have been in remission until the fistula issue arrived.

My gi would like to have a seton put in. I am deathly afraid of that option as it looks like many continue to have a lot of pain from the seton. I also feel there has been minimal attempt to start with medication b4 surgery?

Will I be able to function with a seton? Walk for an hour? Go to my job?

Basically... Scared and feel draining the fistula, and a year of flagyl would be a better 1st step?
Difficult decision.
Click to expand...
Sue, I walk as much as possible & currently have 4 setons in place!
 
Jay Woodman said:
Sue, I walk as much as possible & currently have 4 setons in place!
Click to expand...

I have one seton, but it doesn't hurt at all. The first week or so after it was put in there was a little pain, but not that bad, and then no pain. I do pretty much all the same activity I did before as far as working, walking, and whatever else. It's been well over a year since I got it, and I was supposed to have it only for a couple months until the Remicade kicked in. Well, so that hasn't worked as planned, so I still have the seton, and it still drains. That's disappointing, and I can't help but wonder if this thing will ever heal, but at least it doesn't hurt. I know it could be worse and I could have more fistulas. I did get a new abscess a few months ago, and I had a course of Flagyl and Cipro, and since then it seems to have retreated.
 
Thanks so much for replying and info.. Very reassuring to know one can function with a seton. Still not wanting to do this but it may be inevitable. Seeing GI Doct today and going to ask why we haven't tried to battle with flagyl/cipro combination 1st. Can I be on remicade with those drugs?

AUGH...questions go on. Sorry but I greatly appreciate any info I can get.
 
Suehelb said:
Thanks so much for replying and info.. Very reassuring to know one can function with a seton. Still not wanting to do this but it may be inevitable. Seeing GI Doct today and going to ask why we haven't tried to battle with flagyl/cipro combination 1st. Can I be on remicade with those drugs?

AUGH...questions go on. Sorry but I greatly appreciate any info I can get.
Click to expand...

Sue, Based solely on my personal experience Cipro-Flagyl only seem to temporarily supress my abscesses. As soon as I complete a 14 day regimen the abscess rebounds back to square one : ( Based on my experience they were more of a "stall" rather then a "corrective" action plan : ) But I do find them useful as a "stall" measure if I am travelling & develop an abscess & need to delay the presentation of the abscess until I can seek medical treatment.
 
Exactly what I've noticed as well. Decided today to put on my big girl panties and go for it. I certainly can't be worse off than where I've been. Surgery Thursday next week.

Crossing my fingers and saying a few prayers.

Thanks so much for your help.

Sue
 
Suehelb said:
Exactly what I've noticed as well. Decided today to put on my big girl panties and go for it. I certainly can't be worse off than where I've been. Surgery Thursday next week.

Crossing my fingers and saying a few prayers.

Thanks so much for your help.

Sue
Click to expand...
Sue, I did experience unpleasant tenderness after the setons were placed & was only comfortable in a horizontal position for several days. Sitz baths should help somewhat with your discomfort. I did take painkillers for the first 24 hours. I would recommend you allow yourself a two week adjustment period. You will be amazed at both your mental & physical adjustment progress provided you have a positive "can-do" attitude. Following the initial two weeks I was up & "running". Or shall we say "walking". The setons will allow drainage & prevent a recurring abscess. I think you have made a very wise decision.
 

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