Mushroom drains..size...are they made out of latex...or rubber...?

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frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/11/2009 8:47 PM (GMT -7)   
Just wondering if anyone knows...i know you have one Phoebe..what is it made out of..how is it tolerated...does it push itself out as time goes on...how big is it...
What if the fistula tract is way too small for a drain...like a mushroom drain..do they have different sizes or do they just bust through the fistula tract ?thanks

 


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 9/12/2009 5:12 PM (GMT -7)   
bump; waiting for Phoebe to answer this one :-)
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/12/2009 5:47 PM (GMT -7)   
thanks for the bump lol yeah where is Phoebe....

 


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 9/12/2009 5:50 PM (GMT -7)   
Having a weekend, I expect :-). She tends to be here more on weekdays than weekends.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/12/2009 5:56 PM (GMT -7)   
ahh ...she must be having fun i hope!

 


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 9/13/2009 4:34 PM (GMT -7)   

Hehe HI GUYS!!! I was out having fun as it turns out, we have this festival every year here in Brisbane called Riverfire, and my sister lives right above South Bank so we had a perfect view of the fireworks and the F111’s flying overhead, so close to us!

 

Frogelita, I do worry a bit for you if you are considering a mushroom drain, because I know you’ve had difficulty being comfortable with a seton, and a mushroom drain is much more difficult to live with than a seton….. A seton is flexible and just a string whereas the mushroom drain is not, it just pokes straight out and is not very flexible, (but flexible enough to live with)…… but I am so glad I had one put in nevertheless because the excess sepsis I had is now being drained.

 

I had my mushroom drain put in a few months ago now. When I first came out of surgery I just wanted it OUT it was so scary looking and uncomfortable and I wanted it to be out within the week. I have now grown to adjust to it. It is a tube, a bit thicker than a standard pencil, and it is rubber, skin-coloured, and mine was poking out around 4 or 5 cm from my butt when I first came out of surgery. They stitch it in at first, and this is the most difficult period because the stitches can pull this way and that when you move. I have had to sit ‘on my side’ and not front-on, for months now, but I was just very gentle and brought a pillow to work to sit on at my desk. It is also difficult to walk when you first get it. as my surgeon said, “these things are difficult to live with” (the drains). It is hard to adjust but let me tell you it is WELL worth it, especially because it prevents damage to the muscle. The mushroom was inserted into my existing cavity which was there after the seton was put in and the abscess was opened up. so it goes into the existing hole, and drains from there. I had a lot of drainage initially but now just have to change the liner once a day.

 

The drain DOES grow out, which I think is great because it shows that its healing from the inside out – so you can SEE the results. I didn’t realise my abscess was so deep until I saw how much it grew out. After about a month I was having excruciating nerve-pains in my butt whenever I tried to get dressed, I couldn’t put my undies on, I was in tears, and even painkillers wouldn’t help, and I could barely walk from the pain. I saw my surgeon and he was willing to do another exploratory surgery but instead I found out why it was so painful - the tube had grown really long (like a tail!!) and had become about 9cm poking out, so it was being pulled left and right whenever I moved because of the increased leverage. So I took it upon myself to carefully trim it, which my surgeon said was fine. Because it had grown long it was pulling…… after the trimming it was instant relief….. If you do get one just make sure it doesn’t grow too long but don’t trim it before a month of having it.

 

I hope this answers some of your questions frogelita. I know when I had my drain inserted there was no one on the board who had had one, so I had a lot of questions and not many answers since there’s not much out there! It is very hard to live with and much harder than a seton, but I think its worth it, because it deals with the problem, you just have to be prepared for an ugly-looking drain and a little ‘tail’!! and you will get used to it, I just don’t want you to freak out too much when you first see it because it looks sooooo ugly and it is uncomfortable. The stitches eventually fall away but it stays in due to the mushroom shape at the top. I am scared about how easily mine will come out once I have my remicade…… they might have to put me under again to get it out…. I hope not!


FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 9/13/2009 5:57 PM (GMT -7)   
Oh Phoebe!  Thank you for sharing your experience in such detail.  As you are our lone mushroom drain expert, it is important to describe it and document it.  9cm!!  Wow!!  I think your message is very clear.  Sometimes we just have to live with difficulty in order to get well.  Thats it.  No other choice.  Just have to do it.  The quicker you start, the quicker it will be over.  It is so helpful to know in advance what it will be like so you can prepare mentally.  We all know, not knowing is the absolute worst.  And knowing folks are here on this Forum to help --  and hold you up even when you are on the floor -- is so very comforting.  Thanks again!

Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 9/13/2009 6:00 PM (GMT -7)   
I don’t want it to sound too scary but I just wanted to warn you because I know you’ve found the seton hard, and the mushroom drain is a lot harder to deal with than a seton. But don’t get me wrong, its definitely worth it, it just looks scary and is painful/uncomfortable (well, was for me anyway)…… so with everything that’s going on I just want you to be ready for it to be tough at the start if you decide to get one. It is literally a tube poking out your butt, so it’s not very practical, but it works, and that’s the main thing. You probably won’t have to have it in as long as I have either, because you don’t have to wait 12 weeks for the Remi like I am currently doing…. I guess it all depends on the size/location of the abscess too…..

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 9/13/2009 6:21 PM (GMT -7)   
Also Frogeleita I think if you are worried about reacting to the material of the mushroom drain, you should ask the Doc to do a sensitivity test first.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 9/13/2009 6:42 PM (GMT -7)   

Haha - the lone mushroom drain expert - I like that title!! You are so right; it’s all about being prepared. If you can get as much info as possible beforehand, you are less likely to freak out, because you are prepared for it to be tough. I know the feeling of wanting answers and searching without finding anything useful….. I wanted to know what it would look like and how it would feel. I woke from my mushroom surgery crying and in pain and asking for morphine (they left me to wake up lying on my ‘bad side’!) and I was in tears, asking the nurse what it looked like, how big it was, where it was, because I needed to be ‘prepped’ before I had the guts to look at it. Even then, when I got up the nerve to look the next day, I was freaked, after seeing the length, size, the stitches. I wanted it OUT! This crazy big foreign tube! I felt like a robot! But you learn that it is working, it is there for a reason, it is your friend even though it is uncomfortable….. You’re so right fallcolours, sometimes you have to just be as tough as you can be and keep your chin up. Being at work I think helped me with that, because I didn’t have time to wallow and feel sorry for myself, even when I really wanted to. I hope this helps somewhat Frogelita….. it is well worth it but you just have to be ready. I didn’t know how hard it would be, I thought setons were tough, but I know I did the right thing, the sepsis was too deep for it to drain with a seton.


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/14/2009 3:57 PM (GMT -7)   
oh gosh...this thing sounds bad..i am going to ask for the sensitivity test..i am pretty much guessing...that he will need to cut me open again...ughhh and stitches sound pretty bad...this sounds pretty scary...the only thing about the seton that bothered me was where it was in the anus...for some reason that caused me great discomfort..and then when i was allergic to it...that was bad too...for the most part...i have been cut so many times in that area..that most of the nerves i think are just dead or something...cause i could barely feel the incision at all...except for the new area that they cut me low into the rectum...i am going to make sure to make myself heard this time...and ask any questions i need to ask...i am glad this is a two part process...at least this time..someone is talking about...actually removing it...i am just wondering..i can tell the tract is really small now..so somewhere inside of myself i have hope...it can just be taken out...god i would be so happy...now that i am coming up to nine years with this problem...all i know is everynight i pray to god that somehow this thing will just go away...i am still waiting..on Remicade too..its the impossible quest....now they say they need another authorization and more info from my GI...by that time..i should have a nice huge abscess...lol..really and honestly...your experience is scares me..i am not sure what to do

 


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 9/14/2009 5:11 PM (GMT -7)   

Hey Frogelita, I didn’t want it to scare you, but I just want you to be prepared for it to be tough, because its much tougher than a seton, it is not designed to be in long-term, but mine has been as I am waiting for remicade. The stitches are uncomfortable but they dissolve after a few weeks. You have to do lots of rinsing with the shower head after going to the loo, because if you found a seton hard to keep clean, the mushroom drain is much harder to keep clean, but can be done with a shower sprayer.

In my case I wasn’t really given any other option, there was no other answer other than exploratory surgery and the possibility of a mushroom drain….. Which ended up being the case. I didn’t know much about the drain at all before I went in, and when it was explained to me, it was explained differently every time by each nurse/doctor I saw, I wish they had shown me the tube and how it looked etc. it is essentially a catheter put in for the drainage to flow out of. It is hard to live with, but it works.

 

I just don’t want you to get the drain and then fall to pieces, because it sounds like you are very fragile at the moment. But sometimes as I’m sure you know well, you have to suffer and put up with the pain and discomfort because at least it is solving the problem, and I don’t think there is any easy-way-out in this case. It sucks to hear the remi is taking a long time for you to get. I still haven’t heard about my application either, it’s been nearly 4 months of waiting now……. still waiting, still waiting…..

 

I had so much on my plate while all of my drain surgeries were going on that I didn’t really have any option other than having to suck it up and do it…… working full time I couldn’t have more than a couple of days off, and I had to return to work and suffer it. But in a way I think it helped me maintain a sense of normality.

 

What are your other options Frogelita? Definitely do that sensitivity test…..

 

And also – just because it was difficult / uncomfortable for me, doesn’t mean it will be the same for you, this is my experience and as the only person here who currently has one, that’s all it is – my experience. I would hate to put you off completely; I just want you to be prepared because you found the seton so tough.

 

Hang in there Frogelita, any other questions just ask J


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 9/14/2009 5:14 PM (GMT -7)   
I have had a mushroom drain in a few times after my abscess surgeries, but my surgeon always removes it about 10 days after surgery.  I don't really have much to add...except that I LOVE my seton tons more than those mushroom drains!

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 9/14/2009 5:22 PM (GMT -7)   
Remember you don't know what he will find when he gets in there. Just believe in your heart that he will do whatever is necessary to make you well. And even if it is a mushroom drain and an incision -- you must believe that that is OK. Because it is necessary and will make you well. I have been there. Where you just have to put yourself in God's hands and say I just need to trust.

Honestly, I don't believe for a second that Dr. O would do any more than necessary. He understands that incisions are to be avoided in CD, and I truly believe he understands how awful this all is. And here is why I think this -- when I got my third abscess, I was just in tears. Not another incision I cried! When will this end?! But I knew it had to be done. I called Dr. O and he got me in the OR the next day. I so dreaded it!! But when I woke up, I thought, hmmm. I don't feel much at all. So I screwed up my last ounce of courage and looked. All I could see was a 1/4 incision -- so tiny!!! I literally danced for joy!! Dr. O said that was all that was necessary. So be prepared for the worst and be prepared to accept it as OK, but still hope for the best!!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 9/14/2009 5:24 PM (GMT -7)   

I was hoping mine would only be in for a week or two also….. But unfortunately for me they left it in for months!! I know its for the best though because hopefully if all goes well the remi will help things heal and they don’t want to risk taking it out before then…….I completely forget that I have a seton….. Those things are bliss compared to the mushroom!

 

In my opinion, if it works, I’ll put up with it J

 

NEVER let anyone see my naked bottom though!! Can’t wait to have a tube-free butt one of these days


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 9/14/2009 5:44 PM (GMT -7)   
Phoebe -- I so hope the remi will turn everything around at lightening speed. It works wonders for so many. If not remi then humira. And if they showed me a tube as long as the one you got, I would have run out of the room!! Maybe if they showed a nice looking picture I would be OK. Do mushroom drains come in fashion colors like setons?? I did put in a request for a nice pretty blue seton and my doc looked at me like I was plain nuts. He laughed when I said I thought they should offer more colors! You gotta laugh or you will cry! Only we seton sisters understand any of this!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 9/14/2009 6:06 PM (GMT -7)   
Haha I know exactly what you mean – I was actually grateful that the mushroom drain was skin-coloured, because when it grew as long as it did, well it would have looked pretty hilarious if it were bright blue or red!! I think a clear one would have been nice too, though it may have gotten a bit yucky-looking at times….. You’re right, when the tube got as long as 9cm poking out, it really did look freaky! Literally like a tail!! Now I’ve trimmed it down but you can still clearly see it – it’s about 5 cm coming out. strange how you get used to these things….. when it was fist in I just wanted it OUT!! and couldn’t stand it….. now I appreciate that its doing its job….. Even though it does get in the way. I am really going to feel like a new woman when its out! I really do hope that the remicade works for me, my gastro seems to have high hopes for it and thinks it will give me a sense or normality again, though I don’t think I remember what it feels like to be ‘normal’. I just want the fistulas to close, the thing I find most disconcerting is the constant drainage, and I can’t put a gauze inside my butt, because of the drain.

I am very curious what the top of the drain looks like, the ‘mushroom’ part. Apparently they put it in and then inflate it with air so it forms the mushroom shape and stops it from coming out.

Rzrbckfan
New Member


Date Joined May 2009
Total Posts : 10
   Posted 9/14/2009 7:57 PM (GMT -7)   
I had one last year.  For about a month or so.  While it's not "comfortable", it does it's job.  Mine drained really well for about 2 weeks, then just slightly daily after that.  It grew out, so I had a "general" surgeon cut it down - well, he cut it too far, and it receeded into the abcess!! I quickly called my CR surgeon back (who was 11 hours away from me), and he said to come in the next week.  I went in, where he thought that it had healed enough, and removed it.  Removal was, interesting...it sounded and felt like a really loud pop.  I felt really good after it came out, and the hole closed up on its own.  You can still see where the abcess was, and feel the scar, but it was totally worth it! Good luck!!
27-yr old female, happily married for 5 yrs, 2 dogs...
Dx with UC May 2004; Total Colectomy, J-Pouch May 2005-April 2006; Abcess - April 2008, loop-ileostomy - change DX to Crohn's; Struggling with hemoglobin and iron counts since October 2008...
Current meds: Prednisone (BLAH!) 2 mg, Humira, Calcium 600 mg + D twice daily, Multivitamin, Prilosec OTC
Failed Meds: Asacol, Colazol, Pentasa, Imuran, Remicaide

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