I am really starting to feel defeated. I just had another mushroom drain placed and this one is the most painful one yet. Sitting moving laughing sneezing all hurts. I am miserable. In the last 6 months I've had 3 mushroom drains placed in accesses and they have no idea why I'm developing them. My gastro at the clev clinic thinks I could have crohns not that I do could, but I saw dr.hull about fixing a fistula I have and she isn't convinced that these are from crohns currently waiting results of another MRI. Dr. Remzi brought up the idea of having a temp ostomy to "cool things off" for my bottom. A part of me wants to say yes! Yes do that now but the other is scared. Another major surgery and to have a "bag" again. I'm not sure if I'm ready for that, my jpouch is fine it's in great condition it's the fact I'm developing these abscesses and fistulas so often. Remzis NP is pushing the temp hard and he said himself I shouldn't be pushed but if anyone knows Vickie Rumpler she pushes you. I don't know it's just a lot. I know I'm in the best hands but it's the thought of being on H50/51 floors I monitor at the clinic daily, that scares me. That pain, the recovery and the chance of nothing changing that scares me!
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Danielle, sorry to hear of this. I can surely understand the frustration that must be involved. Wow - the EUAs you've had!! I wonder if they have any kind of evidence that a temp ostomy is helpful in "cooling" things down for these sorts of problems?
I absolutely hear you on the thought of having surgeries with the chance of nothing changing. Although I have no where near the # of fistulas and problems you've had with them, I'm seeing Dr. Hull as well for my fistula. She recommended redo (no), and I've been mulling over pouch removal for some time now - years, actually.
Please let us know what you decide, and how things progress for you. Sending positive thoughts your way ---
Hi Danielle,
I sent you a message last week but thought I would post on here since I see you are recently post drain again. Let me start off by saying that you are trooper for enduring that many EAU and drains!! I had a fistula about 4 years ago and had the bottom of my pouch redone to get rid of the fistula by my local surgeon but was re-diagnosed as having Crohn's instead of UC soon after and started on Remicade. . Are you on any meds? Sorry if that was posted somewhere and I missed it. I had 2 abscesses/fistulas within the same week at the end of June and had 2 setons put in. I have so much anxiety about another abscess forming and think one may be popping up as we speak. I hate living like this , hate the setons with a passion, and don't know how far, if at all, I am willing to go to save my pouch. This is such a personal decision and only you know what you can tolerate with maintaining some sanity. I am having a temp ileostomy formed on Thursday to divert the pouch. I will let you know what my outcome is and I hope that it is good news so I can give you some faith in the diverting ileostomy (and because I may go insane if it doesn't go well...hahaha) I haven't done much personal research on fistulas but the little I have read tells me they are very hard to get rid of and reoccurrence is likely so that is so discouraging to me. Are they considering re-doing your pouch at some point to try and get rid of the fistulas? Not sure if that is even a real option...hang in there!!!!
I sent you a message last week but thought I would post on here since I see you are recently post drain again. Let me start off by saying that you are trooper for enduring that many EAU and drains!! I had a fistula about 4 years ago and had the bottom of my pouch redone to get rid of the fistula by my local surgeon but was re-diagnosed as having Crohn's instead of UC soon after and started on Remicade. . Are you on any meds? Sorry if that was posted somewhere and I missed it. I had 2 abscesses/fistulas within the same week at the end of June and had 2 setons put in. I have so much anxiety about another abscess forming and think one may be popping up as we speak. I hate living like this , hate the setons with a passion, and don't know how far, if at all, I am willing to go to save my pouch. This is such a personal decision and only you know what you can tolerate with maintaining some sanity. I am having a temp ileostomy formed on Thursday to divert the pouch. I will let you know what my outcome is and I hope that it is good news so I can give you some faith in the diverting ileostomy (and because I may go insane if it doesn't go well...hahaha) I haven't done much personal research on fistulas but the little I have read tells me they are very hard to get rid of and reoccurrence is likely so that is so discouraging to me. Are they considering re-doing your pouch at some point to try and get rid of the fistulas? Not sure if that is even a real option...hang in there!!!!
Sounds awful Danielle. I had a mushroom drain for 10 days and I was in a great deal of pain from it. How long have you had your pouch? Has pouch redo been given an option?
I am so sorry Danielle,
That is awful...and so unfair.
I had a thought though...years ago when I kept getting horrid abscess that no one or amount of antibiotics could control or stop (and no one could figure out why) then ended up doing emergency pouch surgery on me (for something completely unrelated...Valve slippage)...and discovered that I had necrosis behind my pouch.
They cleaned up the necrosis and other than the normal post op stuff the rest was fine...no more abscesses.
You may wish to throw that by your surgeon...there is always a cause...the abscesses are just a symptom...
Sharon
I have actually made a decision. i decieded to have a temp ileostomy. i had an appt with my gastro dr and he told me that if dr remzi is saying surgery would be benefical that is the route to go. he doesnt take surgery lightly and thinks i will def benefit from having it. after thinking about it for a few days and weighing options i thought this was the best thing for my overall health. i am literally sick and tired of being put under every other month it seems and the drains and setons. i am at my breaking point it seems. i work for the cleveland clinic so i am blessed that i wont see a bill basically for this surgery, and i will be paid while out recovering. We are hoping that this will cool things off. and what else helped was the fact dr aschard (spelling is wrong) said it would be almost pointless to start medication on me at this point. I am now waiting to hear back from remzis office to schedule the surgery. i am hoping he will be able to get me in since he knows i am suffering. but we will see. they call me a "complicated" case so i hope this will help.
I hope this helps you, Danielle. Best of luck! Please keep us posted as to how it all goes? I feel something going on inside "down there" and am so afraid it's an abscess or another fistula, and am ready to put an end to all this, if at all possible, so will be following your progress closely. There are only so many EUAs one can handle!
Thank you and it did. I will def keep everyone updated!