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07-13-2013, 09:05 PM   #241
Sailorluna
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I have never had a fistula there but I would expect them to drain the abscess.
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Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

_____
Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
07-19-2013, 09:19 AM   #242
Daisy G
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I'm seeking some feedback/any thoughts on my situation?

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

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

I would appreciate any thoughts... thanks
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Daisy G

Crohns Disease diagnosis: July 2007
Osteopenia diagnosis: March 2012
Current medications: Puri-Nethol (Mercaptopurine), Remicade (Infliximab)

Previous medications: Augmentin, Metronidazole (Flagyl), Amoxycillin, Prednisone, Pentasa (Mesalamine), Imuran (Azathioprine), Salazoypyrin (Sulfasalazine), Humira (Adalimumab), Salofalk Mesalazine enema & Budenofalk (Budesonide) enema.

Previous supplements: Ferro-Gradumet; Duro-K (Potassium Chloride)
07-19-2013, 04:00 PM   #243
DougUte
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Daisy, Nobody is keen on surgery. I had my ileum removed and about 2.5 ft of my small intestine and 6 inches of the colon. It was a good thing to do. I did not need the bag though. Sometimes surgery is a necessary evil.
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Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
07-19-2013, 10:56 PM   #244
Essieluv
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I agree with Doug. Nobody ever really wants surgery, but if it makes you feel better isn't it worth it? It's not an easy decision to make though, no matter what. I'm sorry your having such a rough patch.
07-20-2013, 05:18 AM   #245
Daisy G
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Thanks DougUte & Essieluv I appreciate your feedback.
07-22-2013, 09:31 PM   #246
elvie
 
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I'm wondering if anyone can offer advice on medication. I was diagnosed with fistulising and colitic Crohn's last December and was put on Humira in January. The Humira has been working well, according to two MRIs, for the fistulas, which are now substantially smaller than they were prior to Humira.
However, since Humira I've still had Crohn's symptoms such as diaorrhea and exhaustion, and I have frequent headaches although they are mostly mild. My gastro (I can't quite handle the term GI because it makes me think of a soldier!) wants to do another colonoscopy which is booked for this Friday to see what's going on inside to give me these symptoms. To be honest I hadn't been too worried about these symptoms because it seemed to me, based on this and other forums, that plenty of people still had these symptoms regardless of what medications they were on.

My gastro has said that after the scope he might put me on methotrexate in addition to the Humira, or change me to infliximab. I'm just wondering if anyone else has changed medications like this due to having similar problems. I'm a bit wary of changing medications - I was very ill for about a month after starting Humira - and I don't want to go through that again. To add to that my job is very stressful at the moment - I'm a university lecturer - and it's going to be very intense for the next 4 months. So getting sicker is really not an option, but then again if changing drugs fixes my other symptoms (or at least gives me a bit of energy...I miss waking up and not feeling absolutely exhausted before the day's even started!) that's got to be a good thing.
07-23-2013, 08:13 PM   #247
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We have seen multiple GI docs and surgeons, and all have said Remicade is absolutely necessary for fistualizing disease if not allergic. My daughter is now in remission after months of Remicade and Seton.
07-23-2013, 08:59 PM   #248
Jordinary
 
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Remicade gave me lots of energy, none of this waking up and feeling like I haven't slept at all!
I have also noticed my fistula has been healing, the drainage has slowed down significantly and I just had my fourth infusion last week.
07-23-2013, 11:31 PM   #249
nogutsnoglory
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It's good to hear that Remicade seems to be really potent and powerful for this problem as well as other Crohn's disease issues. It's something that I'm deathly scared of trying compared to the other Biologics but my doctor seems to be leading me in the direction of starting Remicade. They don't think Cimzia is completely doing the trick.
07-24-2013, 01:33 AM   #250
elvie
 
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Good to hear that about Remicade and energy levels! I'm beginning to wonder if changing from Humira to that might be a better idea than sticking with Humira, if it will do a better job of improving Crohn's symptoms!
07-24-2013, 09:44 AM   #251
copeland
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It's good to hear that Remicade seems to be really potent and powerful for this problem as well as other Crohn's disease issues. It's something that I'm deathly scared of trying compared to the other Biologics but my doctor seems to be leading me in the direction of starting Remicade. They don't think Cimzia is completely doing the trick.
Out of curiosity, why are you more afraid of Remicade than the others?
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07-24-2013, 10:08 AM   #252
nogutsnoglory
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Because the chances of an allergic reaction to Remicade are higher than Humira or Cimzia because of the non human protein.
07-24-2013, 12:44 PM   #253
copeland
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Because the chances of an allergic reaction to Remicade are higher than Humira or Cimzia because of the non human protein.
I have heard that, but from what I understand most people don't experience reactions. Remicade has certainly helped me a lot, and they infuse it very slowly for the first hour so that if you do have a reaction, it's not so bad. My doctor says that he's always seen much more improvement in peri-anal symptoms in patients who get Remicade vs. the other biologics.
07-24-2013, 07:18 PM   #254
Essieluv
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NGNG have you tried Humira yet? That's really similar to Remicade but with less anaphlylaxis risk. Maybe that could be your next choice?
07-24-2013, 07:24 PM   #255
nogutsnoglory
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I had a bad reaction to Humira so Remicade is the last biologic for me to try that's FDA approved. I know there are others that are options if we fight insurance.
07-24-2013, 07:35 PM   #256
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Sorry if this is off-topic, but I have a quick question for those with perianal fistulas.

How can you tell if a fistula is closing?

My fistula seemed to heal on it's own for about a month. I didn't know what it was at that point, so I didn't pay too much attention to how it was changing - one day it was just gone. It returned almost 3 weeks ago. I took some flagyl and cipro with no noticeable change (had to stop the cipro early due to some weird tendon pain). I'm waiting on a decision from my GI to put me on 6MP or Aza, but I'm hoping the fistula will resolve on its own before then (I know it's unlikely, but it's happened before).
07-24-2013, 08:13 PM   #257
Essieluv
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Ah, ok. I can see why you wouldn't want to risk it with Remi after your reaction to Humira NGNG. Perhaps if you do try Remi, you could have a small dose of steroid before every infusion, as I know that can help prevent reaction. I honestly don't blame you for not wanting to try it though; I had an allergy to both biologics I tried before Cimzia and was really scared to start it.

Vetgirl, when my fistula was healing, it was actually quite sore and drained a lot. It also bled a bit, but my CRS said it would. I had a seton, though, so I don't know if that makes a difference.
07-25-2013, 12:33 AM   #258
nogutsnoglory
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It's scary and the biggest thing for me is I have panic attacks and I think I'll be super anxious and ill be my worst enemy. I am growing more accepting of making the switch as my stomach is getting more painful and my perianal disease is not getting under control. I may give Cimzia plus LDN or an immunosuppressive a try before calling it quits since it does help a lot, just probably not enough.
07-25-2013, 01:16 AM   #259
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Hello I am new here.
I developed a perianal abscess in March and had it drained under local I was pregnant at the time 8 weeks, little bub didn't make it.
I developed an anterior fistula and had an advanced flap repair in may, unsuccessful devastated.
The fistula became much worse, my sphincter is apparently weaker than it should be.
I am scheduled to have a seton in next week. Very anxious about this and so worried the fistula could get worse or I could end up incontinent.
I'm afraid will develop another abscess if I dont get a seton.
I apparently dont have crohns I hope you dont mind me asking here but you all seem to know a lot.
Any advice on setons would be appreciated, I know what they are but how painful or difficult to live with are they. I really am so anxious and feel so low at hte moment.
07-25-2013, 04:28 AM   #260
Jordinary
 
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I have had a seton for about 8 months now and it really isn't painful at all. Most of the time I can't even notice it is there. There are however a few times where mine rubs against the other butt cheek and that can be painful.
It can be a little difficult with the drainage, but I often just wear pads to ensure it doesn't leak onto my underwear.
I hope things get better for you here on out.

NGNG: I have a severe needle phobia and I always take 3 Ativan before my infusion, it calms me down a lot and ensures I don't have a panic attack. Prehaps your GI could get you a prescription for those?
07-25-2013, 04:33 AM   #261
AlliRuns
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Hello I am new here.
I developed a perianal abscess in March and had it drained under local I was pregnant at the time 8 weeks, little bub didn't make it.
I developed an anterior fistula and had an advanced flap repair in may, unsuccessful devastated.
The fistula became much worse, my sphincter is apparently weaker than it should be.
I am scheduled to have a seton in next week. Very anxious about this and so worried the fistula could get worse or I could end up incontinent.
I'm afraid will develop another abscess if I dont get a seton.
I apparently dont have crohns I hope you dont mind me asking here but you all seem to know a lot.
Any advice on setons would be appreciated, I know what they are but how painful or difficult to live with are they. I really am so anxious and feel so low at hte moment.
I apparently didn't have Crohn's when I developed my first fistula either. Then I developed more. For a long time it was my only disease sign. Was diagnosed last fall. the first month or so with a seton is painful and awkward, after that it's not so bad. Mine had a tendency to irritate my skin whenever I walked or ran too much though. But I even managed to ride my bike with two setons.
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Diagnosed Crohn's since November 2012

Current Medications: Remicade, Imuran, Cipro

Past Medications: Entocort, Prednisone, Flagyl/Cipro, Nexium, Omprazole, Pantoloc

07-25-2013, 10:42 AM   #262
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Hello New person, i dont see a name anywhere. Ive had setons before. I recently had a fistulotomy, but it unfortunately has come back. I have an appointment in about a week to have a seton replaced. I have found, those little round pads i believe that are for removing makeup or nail polish work wonderful to keep the seton from poking into the other cheek. it also helps with drainage. They come in a sleeve and only cost a couple of dollars. Cheep and they work. I hope everything goes well for you and you get this cleared up and that will be the end of it.
07-25-2013, 12:27 PM   #263
Essieluv
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With my seton, I found Tuck's pads helpful. They alieviated some of the discomfort and kept the area clean. It's also important to do lots of sitz baths.

Unfortunately, I found a new abscess about a week ago. I had it drained under anethesia yesterday, but it's so incredibly painful today. I'm taking pain meds, doing sitz baths, and trying to keep it clean. Is there anything else I could do to take some of the pain away?
07-25-2013, 12:46 PM   #264
Sailorluna
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I sit on a heating pad. In fact I am right. now. I did have one draining that was so horrible that I stayed in bed with an ice pack. Good luck. I hope you find some comfort.
07-25-2013, 02:19 PM   #265
pain
 
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Thanks for all the advice.

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

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

So distressed with all of this.
Thanks An
07-25-2013, 06:56 PM   #266
Sailorluna
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seton allows for drainage regardless of what comes out. It will not prevent fecal drainage if present.
07-25-2013, 06:57 PM   #267
Sailorluna
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You mention leaking post bm, do you mean out the fistula or you anus?
07-25-2013, 10:59 PM   #268
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Both unfortunately, will a seton make this worse?
07-25-2013, 11:19 PM   #269
Essieluv
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I have some leakage after a BM ( ha, autocorrect wants to change this to BMW), bordering on incontinence. I had this before my seton placement, and did not notice the seton making it any worse.
07-28-2013, 03:47 PM   #270
nogutsnoglory
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I'm having yet another surgery. I'm starting to feel like a lab rat. How many can I take? I'm
Physically and mentally exhausted and so upset. I can't believe this abscess and fistula business won't end. I really don't know what I can do.

How much can surgeons see under EUA anyway, isn't an MRI much more effective?
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