I'm very far from an expert on this, but I believe that Methotrexate is often used instead of 6MP, in addition to other medications. My daughter is currently on Remicade which is helping, but not getting rid of a stubborn fistula/abscess she has. Her doc is starting the 6mp to hopefully give her the boost she needs to get past this. I believe I've read that they use Methotrexate in the same way. Hope that helpsDoes any one know if Methotrexate (injections) help in healing fistulas?? I am starting Thursday and am not looking forward to it. Dr also wasn't convincing that he knew if it did or not.
I had my setons for six months. I avoided the pool the entire time. Fistulas still straining, still avoiding the pool.How long do you stay out of the pool after a drainage or seton is placed in? I'm not sure what they will do for me till I go in the operating room.
How long have most of you had your seton or drain in? What's the average? For a perianal abscess.
I currently have two setons in place, first one since Jul'12 and second since Dec'12. In December I was booked to go out to the Great Barrier Reef, I asked the Colorectal surgeon if it was okay to go swimming/snorkeling? You could see he didn't want to give me a definate answer... he ended off by saying: "I'm not saying it's a good idea but!" - what kind of answer is that...? In the end I went swimming/snorkelling etc. I actually applied a water proof plaster over the setons/wound area of course it wasn't that effective but it's the thought that counts :ylol:How long do you stay out of the pool after a drainage or seton is placed in? I'm not sure what they will do for me till I go in the operating room.
How long have most of you had your seton or drain in? What's the average? For a perianal abscess.
Have you tried Remicade? It did wonder for my fistula.I have had a rectal-vaginal fistula for awhile now but my Gync has told me it was small. Sometimes I pass gas out of my vagina and see diarrhea in small amounts mainly just on toilet paper in this area. However, last night when my husband was giving me an enema, because I am having a hard time with narrowing and getting stool or food to pass, the liquid of the enema went straight up my rectum and he said that he saw some of it come out of my vagina. I also felt it. I have never had any surgeries or setons placed. I am on Humira but don't think it is working much (been on Humira off and on for 5 or more yrs) and now 6 MP. My pain is more in my belly button region but I do feel discomfort down there. Any suggestions?
I have already used Remicade for years but this was back in 2002- about 2006. I have already re challenged med once. Don't know if it would work again or not. It stopped working before. Thank you for suggestion.Have you tried Remicade? It did wonder for my fistula.
How do you cope with yours? Do you notice pain from fistula or rectal disease in general? I don't think I have much pain with fistula just vaginal discomfort. My Gync gave me Premarin cream to use as needed and a steroidal/ anti fungal cream as needed. I have problems with rectal fullness and not fully being able to evaluate. This also comes from sphincter problems but the fullness is worse and I was wondering if fistula could be cause? I have also had proctitis.I have one too... I have too much rectal disease activity for them to consider surgical options for getting rid of it but there are some ... I have not heard a whole lot of success stories.
Have you seen a colorectal surgeon at all for the fustula? You may want to talk to either a colorectal surgeon or a gyne surgeon. Iin my opinion they are far more knowledgable then a regular gyne or gi. At least that has been my experience.
I am sorry you are going through this. I hope you find the answers you are seeking.
What r your rectal stricture symptoms? Sorry, last question.I have two fistula the rectal one sometimes hurts and gets irritated when I have diarrhea. It bleeds too. the vaginal one never hurts, The gas and occasional fecal matter are the only real symptoms from that one. I also have a rectal stricture. I have not really had rectal pain or fullness, I am not sure what causes that.
As for coping, well there is not much that can be done. I had a seton there for a couple months but it did not make a difference. I wear a pantyliner all the time just in case. My doc told me that if you are leaking you can use a low absorbency tampon. I am a bit nervous about that though, worried about infection.
Figured you probably had, but since it worked so well for me, figured worth mention. I'm on weekly Humira now and HOPING it works on my fistula as well, but not much luck so far.I have already used Remicade for years but this was back in 2002- about 2006. I have already re challenged med once. Don't know if it would work again or not. It stopped working before. Thank you for suggestion.
Speaking to your first question - my peri-anal fistulas are always much more active/painful and drain a lot more right before my Remicade, and if I have to go off the Remicade for a while for some reason, they continue to get worse. I imagine it's similar for those with other kinds of fistulae too.I have a few questions: does anyone notice that their pain is worse from the fistula when they are due for another dose of a biological? Mine is diagnosed to be a bladder to bowel fistula, but it seems worse on right before my Remicade infusion.
On the rare occasion I have sex, I also have pain-does this mean it possibly is in my vagina or that I have developed another one? If I stay on pred it isn't so bad but my doc keeps trying to get me off of it.
:hug: I am so glad you shared this; it's nice to know someone else understands. The GI doctor (a man) keeps asking, "Well is it in your bladder or your vagina?" I have repeatedly told him that it all hurts. I'm sure you're right, it's all tender since I've had an ongoing bladder infection for six months.Mountaingem, I had significant relief from my bowel to bladder fistula when on a Remicade/Imuran combo, but the symptoms gradually crept back after the last infusion. And yes, sex was painful and I wondered too if I'd developed a vaginal one too. But I think, cos our lady bits are all so close together, inflammation in one area can put pressures on others.
Constant UTIs can leave you very raw in that area too :-(
I have the freshest booty around, haha! I have been using tea tree oil to help keep granulation down (which works well for me by the way) and the other perk to that is that my bumm always smells like it just ate a mint!Flaring up bad pain runs to bathroom and don;t enjoy food!!!! Dr. say :stinks:he won't doing anything cause surgery might make me weaker down in that area ? Also has anybody notice the stink in your body from a draining fistuala
Thanks, and you're pretty awesome yourself! I try to stay off the pred. I sometimes use anti-biotics (Cipro/Flagyl) to get through to the infusion if it gets really bad, but usually I just grit my teeth and bear it until the infusion. Not trying to be brave, it's probably more laziness than anything!:rof: You are awesome Well, the GI doctor wants to keep me on prednisone, is that how they handle the fistula flaring close to your infusion? I just want off of that stuff, ugh, but the bladder pain is unbearable.
Oh, after reading your posts, I think we're in the same pattern, copeland. You probably are just better at toughing it out, but for me bladder pain is terrible. I stay on Macrobid which works OK but I get lazy taking it because it makes me feel lousy. I guess that's how I know it's working, jk.Yours sound as though they might be worse than mine, though, so I don't know if I'd recommend that.
not sure GOOD LUCKI have a fistula loop to loop in the ileum area...large abscess in the area. I've had a lot of abdominal pain and the doc just kept giving me pain medicine and I kept saying this is a different pain we need to check it out and after begging for a while they did an mri and yep there is a reason for my pain!! Now I am not sure what is going on or what to expect. Colonoscopy and upper gi this week...sigh...no new meds. Do they usually do surgery for this??
Out of curiosity, why are you more afraid of Remicade than the others?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.
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.Because the chances of an allergic reaction to Remicade are higher than Humira or Cimzia because of the non human protein.
I apparently didn't have Crohn's when I developed my first fistula either. Then I developed more. For a long time it was my only disease sign. Was diagnosed last fall. the first month or so with a seton is painful and awkward, after that it's not so bad. Mine had a tendency to irritate my skin whenever I walked or ran too much though. But I even managed to ride my bike with two setons.Hello 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.
Rose, do you know if there are any connections between bartholin's abscesses and crohns fistulas?When you stated 'vaginal abscess' were you referring to Bartholin Gland Cyst/Abscess by any chance? I've had them before myself where they would clear up to 'cyst' form and when my cycle was due the cysts would begin to enlarge. Sometimes they turned into an abscess & sometimes they would just remain a cyst (thank god!, lol).
Hi. Sorry to hear you need surgery. Personally I found surgery to be a relief. I suffered for years with abscesses and fistulas. I've also had surgery for strictures. Surgery brought releif and healing. I could get on with life. Is the surgeon talking temporary ileostomy? I hope everything goes well. Sending you my support and best wishes.Hoping someone can help me. I am due to have surgery on August 8th, 2013. I have a fistula, abscess, and a stricture. Surgeon is doing a ileocecal resection. I'm afraid of a big scar or an ileostomy. I'm stressing out over this.
Fissures are such a pain!! When I had my fissure, I had an ointment and did tons of sitz baths. I hope it helpsHi....
I have recently been Diagnosed with Crohns & have got really bad fissures....Doctor has given me an ointment to apply...
Looking for Any added tips on how to deal with it???