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ddd45
Veteran Member


Date Joined Mar 2009
Total Posts : 572
   Posted 9/15/2012 2:54 AM (GMT -7)   
I had my jpouch removed and everything gutted front and backside earlier this year. I suffered many post op complications, including multiple abscesses and had to stay a month in the hospital. My backside wound was left open to heal. This wound has been having problems and I've had to undergo a few EUAs for additional draining of it. This week, I had an EUA and ended up coming home with a mushroom catheter in the ex-arse area, which supposedly is draining an area way deep up inside. Externally I have a tube about 2-3" sticking out of the area. It is now 6months from my jpouch excision surgery and I've been told I will have this drain at least another 6months with multiple more EUAs throughout the process. This drain is painful, extremely uncomfortable and difficult to deal with. It is impossible to sit, difficult to walk, and it is causing more irritation "you know where". Has anyone ever dealt with something like this? I desperately need some advice as to how to attempt to live with this thing.
 
I'm now into the double digits with all of my UC and faiiled jpouch surgeries, and  I believe this is the worst thing I have ever had to deal with.  My surgeon didn't want to share with me, what the next step is, if this drain project doesn't work. I think it is scary. I really need help figuring out how to live with this apparatus so that I can get my mind back to a place it needs to be to heal.

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 9/15/2012 3:18 AM (GMT -7)   
I don't have any experience with what you're going through now so all I can offer is support. The thought that has helped me often through illness, surgeries, jpouch adaption, semi-incontinence and therapy, is that there will come a point in a foreseeable amount of time when the hardship will have become part of the past. Which doesn't necessarily answer your questions right now. We come to the ends of certain limits and think we can't possibly go on, but we find ways to go on.
Based on what you are saying about your doctor, it might be the time to get other opinions. Spend some time researching the right one/s and don't be afraid to do a little traveling to see them. Another doctor could have a different take on your fistula situation and change the course of things somewhat, for healing and for a way that makes your life more comfortable.
Hang in there.
UC Dx and then 7 years of no symtoms. But when they started, they didn't let up, ASA stopped working, pred stopped working, and azathioprin did nothing. The threat of much more radical drugs, plus the fact that a stricture was about to shut down my colon, led to my decision for a total colectomy in April 2011, 2nd step December 2011 and ... TAKE-DOWN WAS ON MARCH 19, 2012.

uc_free
Veteran Member


Date Joined May 2007
Total Posts : 646
   Posted 9/15/2012 3:44 AM (GMT -7)   
I have to agree with B'Dereh. I have never been through what you are dealing with, and I am so sorry you are going through this. When I was going through hell last year, I just kept telling myself that it would have to get better, sooner or later. I can't believe what some of us actually live with on a daily basis.
36 year old mother of three
Diagnosed with pancolitis in 1998
Tried everything but Remicade over a 14 year period and Imuran was really the only drug that worked before it stopped in 2010
Proctocolectomy with permanent ileostomy 11/29/11
Stoma revision surgery 5/31/12 to rectify supposed hernia, stoma, and ongoing skin conditions
Finally on the road to recovery

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 9/15/2012 11:51 AM (GMT -7)   
Oh lord! you poor thing. I have absolutely no idea what to suggest, and can't begin to imagine what you're dealing with. But I can imagine it's incredibly hard to stay positive and strong given you've been through so much. It sounds truly awful and you have my utmost sympathy. Just try to stay in the 'here and now' to get through this day by day and try not to think too far ahead - as you rightly say that's just scary.

There are some incredibly brave and determined people on this forum and it is amazing to me too what we have to deal with. Most people have no clue. Hang in there.. you WILL get through this. Hugs x
p.s. sorry I know that's not terribly helpful, but just wanted to empathise somehow.
Sarah - 40 year old mum of 2 boys, runner/triathlete from UK
June 2010 - Emergency partial colectomy for peritonitis/perforated diverticulitis. Temporary ileo, reversed Oct 2010.
Reversal failed due to bowel inertia/dysmotility
July 2011 - End Ileostomy - elective
Ongoing dysmotility/adhesions/issues.. but for the most part much better
Follow my blog - http://bagthatruns.blogspot.com

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5922
   Posted 9/15/2012 11:55 AM (GMT -7)   
     I never even heard of anyone having such a horrific experience.  Sorry, all I can do for you is pray.

ActiveUCer
Veteran Member


Date Joined Jul 2012
Total Posts : 1685
   Posted 9/15/2012 6:26 PM (GMT -7)   
I'm very sorry :(. I've never had to deal with this myself, but would a "donut" help? Not the food, but the circular thing you sit on when you have hemorrhoids?
http://activeguts.wordpress.com/

Colectomy with end ileostomy August 30th, 2012 - jpouch sometime
Sitting at 20 mgs pred and dropping!

UC (refractory) sufferer diagnosed July 2011
One never ending flare
enemas, suppositories, Asacol, Lialda, and Colazal = worthless for me; Imuran/Azathioprine = bad liver and pancreas values; Remicade = Not very helpful; Paleo not helpful

tiaeight
Regular Member


Date Joined Sep 2006
Total Posts : 241
   Posted 9/16/2012 3:21 PM (GMT -7)   
I also, have never had to deal with that. Instead, I've been blessed with a recto-vaginal fistula which seems to have permanently attached itself to me! I do agree with you as this is a horrible and frustrating disease. That's why I come to this room! I wish you well.
Diagnosed 1991 Crohns
Colon Resection (9 inches removed) 2009
Temp ileostomy 2010 (Still have)
Fistula repair X 3 in 2010
Fistula repair 2012
Currently on Humira, Azathoroprine

ddd45
Veteran Member


Date Joined Mar 2009
Total Posts : 572
   Posted 9/17/2012 1:01 PM (GMT -7)   
thanks for all the encouragement everyone. Problem is that everytime the nightmare is supposed to end, its something else. first bad UC, then emergency surgery, then jpouch surgeries, then failed jpouch, then diverted jpouch which could've lasted indefinitely, except then bad diversion pouchitis, then jpouch excision and perm ostomy with many complications including month long hospital stay, and now major wound problems from that.

I do have the best surgeon in the united states. I truly believe in him. He's the top at Cleveland Clinic so don't know what more I could ask for there. My first four surgeries were done by other surgeons, so I definitely know good verse bad surgeon! I ended up at CC after problems from other surgeons.

anyways..tried the donut cushion. but that seems to make things worse up inside. And yes tia.. isn't it great to be so blessed by these complications that very few people seem to get! There must be a reason. Someday we may know that.

I think mentally - the pain is the problem right now. So I need to just suck it up and take narcotics so that I can get my mind around this. Been told the pain probably won't diminish with this catheter drain in as it is way up inside. I am sure open to any other ideas to deal with this though.
thanks everyone

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/17/2012 4:27 PM (GMT -7)   
Sorry to hear about all your complications! I can understand what you are dealing with in regards to the mushroom drain:( although mine was only in for a few weeks, it really sux! There really are no easy ways to sit and deal with it. I spent a lot of time on my sides. Take meds to take the edge off. Will you be on disability the entire time you have it in?

Just a few questions:

How deep is the abscess? I had to have one cleaned/drained 6 months post op. it was approx 8" deep and I was able to close it by more than half with a wound vac. My insurance would only cover 2 weeks so after that I was able to pack the remaining until it healed. Has a wound vac been discussed?

Is there a way for some of your abscesses to be drained by JP drains? That might be less invasive than EUA...they can usually dx by CT scan or MRI and then have drains placed. Not painful but you'd have to have the drain attached for a while.

Last thought: I don't know if your surgeon is a CR surgeon or not but you might want a second opinion. Can you get to a teaching hospital?

Just for a frame of reference, I am 4 years post op for my proctocolectomy and still have pockets of fluid in my abdomen. I had 3 drained within the first year but they're still there. Just had an ultrasound and my Gyn saw them but wasn't worried since they've been there and haven't caused any issues. It was mentioned that our insides have their own scars too.

Keep us posted
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 9/18/2012 4:02 PM (GMT -7)   
ddd I am so sorry. That sounds awful.

I had something a little like that, although different. I had a second surgery to close my butt wound, and then I had 3 months of no sitting or bending afterward. I wrote this article about how I coped, perhaps some of it will be useful to you even though it's a different situation: http://tinyurl.com/c4no2pk.

My first suggestion would be to get an appointment with an occupational therapist asap and maybe a physical therapist too. The OT's are all about helping people figure out how to manage daily life with limitations, and the PT might be able to give you suggestions on how to move in less painful ways (or at least make it so that when you're done with this phase, you haven't messed up your body in other ways).

I would be skeptical of the donut cushion, as that spreads your butt cheeks, and that's probably not what you want to heal. You can get a waffle cushion -- an inflatable cushion, possibly a wheelchair seat. I'm not sure how that would be though.... maybe a memory foam kind of thign would be better. Medical supply shops have a bunch of different kinds that you can try.

My surgeons were terrible about getting me the support I needed.

I know someone locally who had anal cancer and a similar (but more extensive) surgery to mine. His surgeon advocated to get him an amazing bed, not sure what it's called, but it had kind of beads and heat and was easy to get out of etc.... not sure anything like that would be helpful for you, but my point is that I had no idea such things existed ... there may be things out there that can help that you don't know about.

What is your situation like for emotional support? Seems quite critical now.

Hang in.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

ddd45
Veteran Member


Date Joined Mar 2009
Total Posts : 572
   Posted 9/19/2012 6:55 AM (GMT -7)   
thx again everyone. I have no clue how deep this thing is, but I've been told... very deep. ave had abscesses drained multiple ways, including CT guided drainage. This isn't an abscess but a chronic sinus. Anyways, my doc is probably the top colorectal surgeon in the country. So I am confident he knows what he is doing.

blue.. thx. for your thoughts. I think the ot and pt are probably good ideas as I am probably messing up my back and hips trying to do anything. And 6months is quite a long time.

Yes, the donut cushion DID NOT work. They didn't work after the surgery 6months ago for the exact reason you describe. At that time it was essential to "not split the butt cheeks". In fact when anyone was trying to help me during my month long hospital stay, I had a motto... "my knees must travel together".. meaning the knees had to be basically "glued together" in order for me to move. That prevented any "butt cheek splitting"! So kinda have to follow the same motto now with this drain.

Your last question is dead on. Today my goal is to try and figure out how to find a counselor to speak to without having to spend hours going over my complicated medical history and educating someone on these horrific diseases. I don't even know where to begin.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/19/2012 8:52 AM (GMT -7)   
I was under the impression wound vacs could close open cavities like that...sorry to hear that's not an option.

Could you get a recommendation for a counselor from your local Ostomy Association, if not your surgeon?

Sending healing thoughts your way!

Crohnswifey
Regular Member


Date Joined Jan 2012
Total Posts : 70
   Posted 9/28/2012 8:10 PM (GMT -7)   
Are you taking your narcotics now? Is it helping a little? Percocet works better than vicoden, but since you are far, make sure you get plenty of refills, you can not call it in to the pharmacy, but can call vicoden (Im sure you know all of this). And I have read some things about wrapping gauze around the part of the drain that is not sticking out as to pad it, to keep it from rubbing areas. If it gets RED and painful- maybe a yeast infection which happens with drains there. And I know easier said than done- but try to avoid sitting directly on your bottom as much as possible, sit on side/hip or lay down. This will get better! Equestrian mom is right, wound vac's are very good. Im sure I know who your surgeon is, he will make the right choice! Do you see a GI doc at the clinic too?
Take your pain meds! You cant heal if you're in pain!
Good luck, keep us updated!
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