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feeling alone with fistulas

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Posted 7/18/2017 2:05 PM (GMT 0)
When my perianal fistulas aren't draining, the fluid builds up in the RVF and is very uncomfy. When I poop I can feel it in my RVF. I have no one to repair it.

The good news is that Stelara is helping my bowel. I hope that means it will help my rectum.

Just really wanted to vent.....I feel a bit sad these days as my 1 year fistula anniversary approaches.

Thanks
Posted 7/19/2017 12:34 AM (GMT 0)
UB,

I know it's been a tough go for you. I have no experience with what you're going through, but just hope you get it attended to soon. Sounds like you need some treatment to get it draining again. Glad to hear the Stelera is working for you.
Posted 7/20/2017 1:47 AM (GMT 0)
Thinking of you UB! I had my first Stelara infusion July 7th and it is definitely helping! I quit 6MP and I'm weaning off prednisone 2.5mg/week, currently down to 30mg.
I still have my perianal fistula, which is pretty "dormant". I take a daily sitz bath and that seems to keep it in-check. I get "diaper rash" around my anus and I don't know if it has anything to do with my fistula or if it's simply "leakage" from my anus. It smells. But other than that I can't complain.
I sincerely hope that you continue to improve and find better alternatives/better providers to make you more comfortable. You deserve a break! Happy "Fist-u-versary", may it be your last!
Posted 7/20/2017 2:30 AM (GMT 0)
UB,

I am so sorry you are going through all of this. Before my Ostomy I too had back up into the RVF. It was very painful. I took hot baths with lots of epsom salts then I would shower off and take my shower head and point it right at the RVF. It hurt so good. No other way to describe it. You don't want to go in like a power wash...Lol...you will know.... And after I did that I would find relief. Sometimes it would even last an hour or two... Now with the Ostomy and the remainder they left in....I still have issues every once in a while when the remaining colon decides to slough or shed its mucus membrain. We are going in for a look see in about two weeks.

Do you not have a colorectal surgeon close to you? Is there anyway to travel to see someone? (I know traveling with everything you have been through is difficult to say the least.)

Hopefully the stelera will help everything.

Hang in there!

Clo
Posted 7/21/2017 9:24 PM (GMT 0)
Thank you all for the empathy and chat.

Clo--- you are a brave woman, nice to hear from you again.

Had 2nd Stelara infusion on Wed.....have been in bed since with nausea, itchiness and general malaise. Sleeping a lot. However last night I could feel the right tract swell up and I knew I was in trouble. This am was so painful. Had a sitz and then rubbed it with tea tree oil. I could see blocked pus at the time. After a few hours and some squeezing it burst. It's so gross. Worse fistula pain and drainage in 2.5 months.

I don't understand why no one has offered to repair them....only drainages and setons........I'm so upset to learn only now about other surgery options. Now I have to figure out if they do a LIFT in Canada. I'm sure it will take months to get into see my CRS......

My bowel is doing really well though....still taking imodium a few days a week but that's more because I'm anxious since my poop routine has changed. Urgency getting better especially in the afternoon. Went 1-2 times per day this week. all normal.

If my bowel is healing on Stelara, will my rectum be healed of fistulas?

How are you guys doing?
Posted 7/22/2017 9:42 PM (GMT 0)
UB,

I am so sorry you are not feeling well after taking the Stelera. I wonder if they can give you some benedryl before taking it...and if that will even help? Please watch yourself carefully as you dont want to ignore it if it is an allergic reaction.

Unsure if Stelera will work the same as Remicade but just an FYI...most of my fistulas healed after about 6 months on Remicade. There were a few that took about a year...and they sound like the one you have there. I too used tea tree oil on mine. I would clean them out really good first and then have to squeeze the puss out clean again and then tea tree oil. Good grief I almost passed out from the cleaning and squeezing....then the tea tree oil.....I didn't know I could hyperventilate like that!! If you are using that stuff you REALLY are UBTOUGH!! The RVF....still hasn't healed for me though. I think it has actually gotten larger.... I leave it alone or I have issues...

Going on the premise that if you are on a medication that causes your bowels to heal..(and mine did I just had that dratted stricture) then it should help with everything else. I will be watching to see what has happened with others that respond.

I will let you know what kind of options my colorectal surgeon gives me. If you have any questions you want me to ask please let me know. I wont see him until August 10 for the look see and then there will be the follow up "scratch our heads and try to figure it out" meeting. Lol.

Hang in there UB

Clo
Posted 7/23/2017 1:54 AM (GMT 0)
UB-- Uhg, I forgot about it but since you mentioned it, I had itching after my Stelara infusion as well, but it only lasted a couple hours and I didn't bother taking benadryl. Clo is right, I think taking benadryl before the next injection will do the trick. You said you just had your "second Stelara infusion" but my protocol is to have one initial infusion and from here on I'll be taking injections that I give myself at home, every 8 weeks. What is your protocol?

I'm so glad to hear your colon is doing well! But the fistulas--ouch. Do you apply undiluted tea tree oil to the fistula? I put a few drops of pure tea tree oil in my sitz bath, but I was told it's bad to apply undiluted essential oils directly to the skin. What do you think? Clo?
Posted 7/23/2017 3:03 AM (GMT 0)
Plucky,

I agree with you. I forgot to state that I diluted mine with alittle coconut oil-and it still stung like fire! Sorry about that UB!! I used coconut oil because supposedly there are fewer reactions to it and because someone told me that it was antibacterial so it might help also.

I think that for me it was the Remicade and then keeping the fistulas cleaned out and the oils on them that finally made them heal. A long drawn out painful process.

UB I wish I could think of anything to help you with the pain of this but the only thing that comes to mind is a prescription numbing cream that doctors prescribe for people with ports. I got a sample once and I did use it and it did give me some relief but not long enough for me to ask for it again-but it may be different for you. The shower head was my best friend there for a long time.

Hang in there!
Clo
Posted 7/23/2017 1:04 PM (GMT 0)
Oh man. I think I'm starting to flare. Well, this sucks. I hope it was just something I ate..... i felt it after dinner & had a purging bm at 2:30 am. Now just water & urgency. darn. My fault. Couldn't resist ice cream....but that was on Thurs. Friday I went twice, all formed. I hope things will settle. Can't tell you what joy it was to wake up & not have to run!!

Worst comes to worse I'll schedule Ivig which will help.

Thabk you. My 3rd infusion is Sept. I'll take Benadryl before.

Sometimes I dilute tea tree, other times I don't.

Clo---yes I have a question!! Does your CRS do LIfT procedures for complex fistulas? If so woukd he/she be willing to take on a Canadian fistula? smile. I'm appalled that no fixes were offered to me. Only setons & we know how that turned out! Perhaps they don't do LiFTs here. I also found an Italian surgeon who fixes them using cryo -therapy.

I've taken a lorazepam. I've had several panic attacks since Thursday's fistula issue. Now I'm in a panic over this potential flare.

Post Edited (U B Tough) : 7/23/2017 7:42:36 AM (GMT-6)

Posted 7/23/2017 7:07 PM (GMT 0)
UB,

Oh man.....Ice cream flares are the worse for me. Dairy is not my friend. I can tolerate the frozen yogurt though. (Do low sugar) I have to admit....I am like you. There are times when I dare the flare by eating things that I just know....... Usually it will settle down some in about three days for me after the cleansing "go" so hang in there.

You might want to call your infusion center/doctor and ask how much benedryl you should take. It makes me incredibly sleepy so be careful.

I will ask him. I wont see him till the procedure Aug 10 and then the follow up apt. I will post to you after I speak to him. I am usually on here off and on during the week. I will make a UB post.....Lol...

Question....does the lorazepam cause D? I know that zofran for nausea slooooows you down if you aren't careful...

Hang in there!

Clo
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