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Surgeon on Tuesday

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Crohn's Disease
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Posted 5/24/2009 11:18 PM (GMT 0)
I'm finally seeing the surgeon on Tuesday for this fistula/fissure issue I have.  I'm willing to do anything right now.  I've gotten to the point where the things leaking out of me really really shouldn't be, and I'm a little nervous.  I absolutely hate living off of pain pills.  I've been tired enough in my life to be done with it.

Anyways, from what a lot of people of told me, it's a pretty simple procedure, and I have enough money in my HSA to cover it, I think.  This second round of flagyl did absolutely nothing for me.  I've been wearing my wife's pantyliners in my underwear to prevent stains on my pants.  This has gotten me down BIG time.  I hate that cycle of depression, where if I wake up feeling good, I'm on top of the world, and then it all comes crashing down in a few hours with a bowel movement.  I don't know what I'd do without my wife, really. 

I think after this, I'll seek a counselor or therapist, just to clear my head and get things in perspective.  As terrible as this disease is, I'm not in a wartorn famine plagued part of the world.  I need perspective and patience. 

And a butt that works.

Posted 5/25/2009 3:20 AM (GMT 0)
I hope everything goes well! Ive been dealing with my fistula since my last resection, but mine is in my abdomen.  My surgeon said it looks like it MIGHT heal up on its own, but if not within 3 months he will do surgery to fix it.  I know how depressing it can get.  He said my weight has a lot to do with it not healing, I told him to try being on 100mg of prednisone for over a year and see how much he gains lol.  Everything about this disease is really frustrating, but we all just need to hang in there!
Posted 5/25/2009 1:57 PM (GMT 0)
(((EXJohnson))) Hope your surgery brings you some healing. Sending prayers your way!
Posted 5/25/2009 2:52 PM (GMT 0)
(((hugs))), ExJohnson! I admire you. You have a marvelous attitude and are really thinking straight. Good luck!!!!
Posted 5/25/2009 3:17 PM (GMT 0)
Good luck! I'd love to hear what the surgeon suggests. I have a fistula in the perianal area too. It's so very frustrating. And, the TNF meds don't seem to do much for me, so it's just there. I have a Crohnie friend who tried the plug, so maybe that would work for you? Anyway, I'd love to hear the suggestions.

Hang in there...
Posted 5/25/2009 3:37 PM (GMT 0)
It sounds as if you have a similar situation to what I have or have had in the past. I'm not sure if you have had any prior surgery, but ensure that all options are pursued. I've had a couple of fissurectomies and fistulotomies and they've left me with greatly damaged musculature and urgency and control issues. You only have so much muscle in that area (anus) and it can only be cut so many times. My perianal fistulas first surfaced (pun intended) about a decade ago and were initially resolved by fistulotomy and Remicade treatment. They have returned with a vengeance a decade later and as a result of developing a reaction to the Remi my only options are setons - as I am at the limit for surgery with my muscle damage at its max. So.....make sure you get all the options and ask how much residual damage surgery might pose for you. Best of luck!

Posted 5/25/2009 6:40 PM (GMT 0)
Thanks everyone, I definitely was on the 'avoid surgery at all costs' list, but it's getting to the point I just want closure (get it, closure?).

It was encouraging to research my doctor, he was named by the Crohn's and Colitis Foundation of America Surgeon of the Year once, and he has other numerous awards. Might as well get the best, right?

As far as continence, that's my number one fear. I'm not yet thirty, and I don't mean to sound all 'my life would be over' but I don't want a bag yet. I don't even have kids. So, it's a thought, a fear, and a stress. Just praying and hugging my wife.

For anyone who's read other posts, my LDN has been great, it just hasn't worked on this fistula. So, numbers say 85-95% of these surgeries are successful, so if I can be one of thosehappy endings, and then have my LDN take care of the rest, with juicing and exercising and wheatgrassing, and alpha linioc aciding (not the trippy kind) and other health stuff, I might be coming out of this smelling like roses, instead of sitz baths and fecal matter. NOt only does it sound great, but actually reasonable.
Posted 5/26/2009 2:51 PM (GMT 0)
Big Hugs to you! I hope the surgeon visit goes well. I am seeing one on Thursday for my Hemmie, Skin tag or whatever the heck is hanging around down there. Of Course it is not bothering me much right now I was sick of the pain and the problems too! I had one day at work the bleeding was so bad I wanted to just go home and hide!!  I called my Doc when it was at it's worst and he referred me to a surgeon. At first I was against it because I do not want to go down that road yet but I am also sick of living with this for several years. I hope your visit goes well! Good Luck Karen
Posted 5/26/2009 9:51 PM (GMT 0)
Thanks for the support everyone.

The visit did not go well. He said that I'm in really bad shape, so the only surgery he could potentially do is a full rectumotomy and give me a colostomy bag. That five minutes of them prodding and poking and squeezing down there was probably the single most painful experience of my life. I am not exagerrating.

So, back on 6mp and steroids, and hopefully things will clear. I'm on an HSA, so I'd have to come up with the $3000 out of pocket for Humira, since Remi doesn't work for me any more. It'd be covered 100% after that, so it's something I'm considering.
Posted 5/26/2009 10:19 PM (GMT 0)
I am so sorry!! I understand how you feel. My sugical options are limited because the fistula is too high in the rectum. A normal fistulectomy would cut too much of the sphincter muscle and leave me immediately incontinent. The low success rates for the plug and advancement flap procedure leave me not wanting to risk it. Its at least 3 weeks off of work and you are almost guarranteed an abscess if it doesn't work. :-(

Right now, I am opting to stick with my setons and let things heal. I had a terrible case of cellulits that was quite painfull (couldn't sit for months!). After getting the setons, several months one flagyl and levaquin, wildly unsuccessful doses of Remicade and Humira (allegic to both) and now 6MP and vitamin D, I am finally feeling much better!!! So I want to encourage you!! I've been off antibiotics now for eight months and on 6MP for 9 months. We can't tell if the 6MP is doing anything or if it is the setons and the votamin D (I know D has greatly helped me). It just took me about 8 months to get to the point where I can sit for hours on end if I want to, work a full day, and maybe just maybe have a little energy when I get home.

By the way, I always take pain meds before I see the doctor. Helps me cope with whatever may happen.
Posted 5/26/2009 11:55 PM (GMT 0)
yeah, I'm on flagyl right now, and maybe it is helping. I'm going on 6mp so I'm hoping that even if it is a long road to recovery, it is recovery nonetheless. guess I'll just keep going on antibiotics.
Posted 5/27/2009 1:34 AM (GMT 0)

Hi exjohnson

 

I am so sorry the visit didn’t go well. I am currently in a lot of pain after having a mushroom drain inserted into a fistula/abscess after the setons I had inserted did not drain the infection fast enough.

 

I have found, however, that setons are great in terms of keeping things under control. I only had mine (2) for around a month before the infection came along and they removed one of them and left one in, but setons are quite comfortable after you have healed from the initial surgery. You can wrap some gauze around them instead of using liners to make it easier to catch the drainage.

 

Are setons an option for you at all?

 

I have this big scary awful tube poking out my butt at the moment while the infection heals, and I have no idea how long it’s going to be there. Being a 23 yr old female and trying to work full time (sitting alllllllll day) makes it extremely difficult with this tube poking out of my ‘infected butt’. I feel your pain and hope they can come up with a solution for you ASAP.

Posted 5/27/2009 2:41 AM (GMT 0)
I'm sorry to hear the news. I was also told that she could not do surgery to remove the fistula or I'd be left incontinent... And the TNF meds don't work and I can't tolerate the 6-MP/AZA meds. :-( It's surgery or just hope it closes in time, I guess. I get so sick of it.

I did just have a seton placed 2 weeks ago yesterday. I'm hoping that will help. And, since I'm on Cimzia, I keep hoping that even if it doesn't put my other Crohn's stuff in remission, it might help on the fistula.

Have you spoken to the surgeon about a plug? They're only about a 65% success rate (don't quote me on that, but that's the general idea) and it's two weeks bed rest, but if it worked that would be worth it. I have a friend who tried it. It failed for her, but she didn't have any negative reactions after the failure. It just came out and that was that.
Posted 5/27/2009 4:24 AM (GMT 0)

I had not heard about plugs before actually! At the moment I am going relatively ‘untreated’ for my crohn’s, something I hope to have changed soon, I am chasing up the hospital to try and get onto their gastro outpatient list so I can hopefully get access to some decent meds like remicade. Up until now I have had crohn’s for 4 yrs and was only ever offered pentasa or steroids. I had a terribly negligent GI (in my opinion). So my disease is very active but I am trying to get medical attention for it, its just taking a frustratingly long time.

 

I hope that once I try remicade it might help with my fistula/downstairs area and getting it healed up.

 

 

 

Posted 5/27/2009 3:17 PM (GMT 0)
So sorry about the visit! Make sure you contact the makers of Humira they might give you some assistance with the medicine so you don't have to pay so much $$$ Karen
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