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Shane199

I just got out of the hospital last week due to having too much fluids in my s-pouch (same idea as j-pouch).  They drained a liter of fluids through a rectal tube.  Then they decided to place a mushroom drain in the anal canal to continue draining fluids until my June 15th surgery.  It is giving me relief as in no cramping or fevers but I have a consistent stinging that percocet will barely touch.  It's been a week since surgery and I assume it's the suture holding the tube in place.  Any advice on how to stop the stinging?  I've tried a warm shower and bath.  Bath worked but last time it didn't seem to.

Much Appreciated, Thank You,

Shane

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JeffsmomJeffsmomMember

Shane, those drains are extremely painful.  My son had one in his back to drain an abscess.  He was on dialodid the entire time.  And was still having pain.  It was such a relief when it came out, but it was in for three months.  He also had a fistulia along with the abscess.  So all of it was very painful.

 

good luck with your re-do.

 

dianne

Jeffsmom
Jan DollarJan DollarModerator, RN, retired

Ask about a topical anesthetic gel, like lidocaine. Of course, you want to be able to feel it, so that you don't yank it right out!

 

Seems like an awful long time to leave that drain in place. Even when I had a presacral abscess, the drain was only in about a month. What is going on with your sphincters that you cannot release the fluid? Something seems not right...

 

Jan

Jan Dollar
Shane199Shane199Member
Thank you for the info Dianne! I hope that your son is doing better now or on the road to a quick and healthy recovery! The drain definitely is uncomfortable!

Jan- Right now the lower 2 foot or so of my small intestine is diverted and made into an s-pouch. That was done in Columbus, OH Wexner. For whatever reason I have holes in it now but I also had an anal stricture. My surgeon in Cleveland dilated it but a week later I was back to the hospital where they drained a liter of fluid. When he placed the drain he drained more fluid. I guess it still has to do with the stricture but my redo surgery he said would take care of this issue. Until then I just have to put up with this.

I'll have to look into asking about ointments this coming week. Thank you!

Shane
Shane199
Shane199Shane199Member
I'm not quite sure. All I know is he has to fix the holes that are letting that liquid leak into my body and cause pain. He says redo but I'm not sure if he'll fix it or start with a new section of small intestine... I did ask if it would cause problems later and he stated that if I have problems with a stricture then he has failed. I won't have the takedown surgery just yet. This is basically redoing the s-pouch due to the holes. Couple months after June we hope to preform the takedown.

Shane!
Shane199
Jan DollarJan DollarModerator, RN, retired

From what I have heard here, Dr. Remzi opts for a complete pouch redo over repair. I do have a question you might want to ask him about though. My understanding is that the s-pouch is mostly reserved for those with a short mesenteric reach (and the j-pouch is otherwise preferred). If this is the case for you, can you have a pouch redo with a short mesenteric reach?

 

The mesenteric reach is the length of the mesenteric blood supply. The s-pouch allows for a few extra centimeters reach. But, if you scrap that length, where would the needed length come from? I am not implying that it cannot be done, but it is something I am wondering about.

 

Jan

Jan Dollar
Shane199Shane199Member
I may have heard that as well. I'll see him again before my surgery date so I can always bring it up then. I hear Dr. Remzi is one of the best in the country when it comes to this so I am very blessed to have him doing my surgery

I do know my first surgeon at Ohio State Wexner was described as old school. He did the s-pouch due to reach he explained but preferred it even though it took longer in surgery than the j-pouch. Just his choice I guess..
Shane199
L liz11Member

Shane. sorry you are going through this. I had a mushroom drain put in by Dr. Remzi after my jpouch removal surgery awhile back. Think I had that mush drain in for about 3months. It was NOT FUN. try sitz baths.. as warm as you can stand them. lots of them. Also pain drugs. 

glad to hear you are with Dr. Remzi. He is the best of the best. 

L
N NickiMember

Hi Shane199. How did your June 15th surgery go? I'm also a patient of Dr. Remzi and had my pouch redone in March at the Cleveland Clinic. I had a leak at the hook up (again) and now have a mushroom drain tail or two. I've had mine since March and will probably have it another 6 months before Remzi decides if he needs to redo the pouch again or if the holes are healing on their own. Somedays the pain is unbearable. I'm sad to say I'm happy that I'm not alone in this. It's so confusing for me to know if I should be taking pain medication or buck up and push through the pain. What pain is normal/expected and what pain is alarming. I'm constantly having to get to know my body again right in time for things to change

 

Did anyone notice a correlation between eating and increased pain? Even though my J pouch is taking a little vacay, I feel like it get stimulated and hurts when I eat.

 

Thanks for sharing! And I would love to here how your surgery went. Say hi to H50 & H51!

N
JeffsmomJeffsmomMember

Shane and Nicki, jeff had a mushroom drain in his back for an abscess.  It hurt a lot.  And lots of times, he didn't eat because it did hurt too much.  He lost about 30-40 lbs.  good thing he had the weight to lose.  I don't know how you will be able to stand having it in for 6 months.  Now I'm not sure exactly if it was a "mushroom" drain, but he had a long hose sutured into his back with a bulb like thing on the end.  He was draining the fluid from his abscess.  Every week he had to go to interventional radiology to have the dressing changed and flushed.  Litterly a pain in the ass.

 

good luck to both of you.  Keep taking those drugs, it helps.

dianne

Jeffsmom
rachelravenrachelravenMember

Jeffsmom, what you're describing sounds like a JP drain (Jackson Pratt). 

 

http://www.ghorayeb.com/JPdrain.html. (From an ENT surgery, but JPs are JPs no matter where they're put). Is that what your son had?  Mushroom drains are different. 

 

If you scroll through this, mushroom drains are in there. 

 

http://www.slideshare.net/mobi...kesh-benignanorectal

rachelraven
Last edited by rachelraven
Shane199Shane199Member
Hello Nicki

My June 15th surgery went well. Dr. Remzi said he is hopeful that it was successful. It was a difficulty 8 of 10 and was luckily able to fix the s-pouch created by the first surgery so I didn't lose anymore intestine. They did find another abcess and removed it. In about 5-6 weeks I'll have a leak test to see how things turned out. Im normally on H51 side and I love the nurses. They're awesome I currently still have 25 staples and 2" longer incision than the first time. Just is extended south towards my pelvis more. Had a Vac dressing on as well. That hurt when it came off. Sore and hair..

First off, if you have the pain med, then I would recommend using it at a reasonable amount. You have it for a reason and there is no point in torturing yourself more than you have too. Mushroom drains suck and I'm sorry you have to deal with it for that long. Hopefully it'll be shorter! My first drain hurt so bad. The second was a pain but oddly didn't cause as much trouble.
As for eating and pain, I'm not exactly sure. The only thing I thought I would notice is drainage after I ate but my intestine is diverted... So it doesn't make sense to me to make my mushroom drain more active. I did end up having a structure and the more the s-pouch filled (bowel sweat) or whatever it hurt bad! Mushroom helped relieve pain yet create its own pain.

Jeffsmom!! Dianne

When I came out of surgery I had a JP drain as well. It came out the side of my lower stomach though. Stung bad when I peed. I don't know why! It's out now so I'm grateful I didn't have it long. I can't imagine having it in my back that long!:/

Thanks everyone,
Shane!
Shane199
jonnakayejonnakayeMember
I'm scheduled for a pouch redo with Dr. Ashburn 10-15-15 @CC hopefully to repair a leak that has caused an RV fistula.  I've been diverted to my 2nd ileostomy since April '15.  All of you that are going through this are amazing.  I'm very anxious about the surgery and the recovery.  I'm feeling better and stronger since the diversion and would probably keep the ileostomy if the fistula wasn't so painful.  I'm almost 50 and not sure how many more of these types of surgeries I can take.  Stay strong all.
jonnakaye
crohn's j-pouchercrohn's j-poucherMember

Jan Dollar

i saw that you responded to this thread, so you must know something about mushroom drains? Dr Remzi placed one on November 30, and all was fine until the other night. I've been emailing with him about it, but he is unable to reply today as he is out of the office. I have had very severe internal pain at the drain site that keeps me up all night as well as severe all over abdominal and pelvic pain. I was in the local ER on Saturday. They don't know what to do with me around here and said all checked out fine with bloodwork, exam and CT scan. But we all know that us IBD folks with longtime problems know our bodies very well. Something has to be done about this and soon, as I know something is definitely not right with it. He will be removing it when I have surgery to repair the anorectal closure site sinus tract that I've had since the proctectomy 4 years ago, but we don't have the surgery date scheduled yet. He will also be repairing a fistula from the sinus tract to my vagina. I don't know much about mushroom drains and can't find info online. Would you think that if I don't hear back from him that I just go the local ER to get it removed? Or could that create more problems? I'm worried that whatever is going on could make the vaginal fistula worse, or cause problems with my bladder again since I had a VVF repair last January. Thanks so much for any suggestions or advice you can give. 

-Rebecca 

crohn's j-poucher
Shane199Shane199Member

Hey Rebecca,

I know your message wasn't directed torward me but I've dealt with mushroom drains in the past. Whenever I would start feeling pressure and internal pain it's because the drain had stopped working. It moved out of place but in my case I had an abscess. So instead of draining, it started collecting fluid again. I only took two of my drains out myself by pulling them. But I also knew the stitch was gone. The other times I had Dr. Remzi pull them when I had a scheduled EUA (Evaluation under anesthesia). I highly doubt the ER could do it but who am I to say that. You are in good hands with Dr. Remzi and I'm jealous he's in New York now. If you can last, I wonder if it's possible for one of his other doctors to perform an EUA and remove the drain. The thing is, idk that your symptoms will get any better with it out. I'm sorry for your troubles, I hope that they can be resolved. 

Shane

Shane199
crohn's j-pouchercrohn's j-poucherMember

Thanks Shane. I agree that pulling it won't fix the problem, but maybe it would take away the pain and discomfort? I get so frustrated with local docs bc they don't even want to deal with me since I have another surgeon. Local surgeon just told me that I either need to stick with Remzi and drive to New York tonight or stick with them and cut the umbilical cord with Remzi. Nice! My body is telling me that it wants the damn thing out. Remzi is going to be doing surgery to correct the fistula so the drain will come out anyway. Do you think if I would just show up at the local ER and ask them if they would just please pull it out I would have luck getting them to do it? I'm afraid to pull it out myself bc the sinus tract connects to my vagina via fistula and I don't want to make that worse. I am in so much freakin pain and the usual "the CT was fine and bloodwork and exam were fine so nothing is wrong" from the ER on Saturday doesn't cut it for me bc I know my body and know when something is wrong......How do your local surgeons deal with the fact that your primary surgeon lives far away? Thanks so much for your reply. It's hard to find people with the mushroom drains

crohn's j-poucher
Shane199Shane199Member

Well that's great! I hope for your sake they can get you in Wednesday! I'm sure it's better to have a surgeon do it rather than risking it yourself. As for the drive... I don't have a local surgeon. So if anything goes wrong I drive to Cleveland. It's 3 hours but not bad really. I live in western Ohio so driving to New York would be a lot farther. When Remzi left Cleveland, I transferred to a new doc. I would love to follow him but I'd have to fly probably and my insurance doesn't cover the hospital. 

Best of luck. I'll be praying for ya!!

Shane

Shane199
N NickiMember

I had a proctectomy and a j pouch constructed. Eventually the fistula healed and I'm currently using the j pouch, but I had an ileostomy for a long time until it healed. Now I'm just getting used to the j pouch. There was a time I thought my take-down surgery would never happen. It's almost been a year since the take-down surgery and many days I think an ileostomy was easier, but supposedly time will help and things have gotten easier.

N
P pammieskrhMember

I just came across this older thread. I am currently at NYC under Dr. Remzi's care.  I had a j pouch redo last Thursday and am going home to Michigan tomorrow,  I have a mushroom drain  which won' be removed for a month on a subsequent visit.  I have to say that the redo surgery  was rough and am glad it is behind me.  Will have loop ileostomy takedown in about three months.

 

 

 

 

 

 

 

P
Shane199Shane199Member

I'm sorry that I never responded about your drain.  Those always sucked, and if you had it for a month.  How awful!

On the other hand, I am soooo happy that you were able to go through Remzi (I still say he's one of the best).  But I'm thankful that you've gotten to experience the take down and that your j-pouch is performing great.  Such great news to hear Keep fighting on!  You've come so far  

Shane199

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