Upset From Dr. Visit

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Regular Member

Date Joined Nov 2010
Total Posts : 42
   Posted 1/24/2011 1:54 PM (GMT -6)   
My situation is different than many of yours.  My ileosotmy is temporary and I only have it because I have a fistula repair.  It was a last ditch effort to fix me.  I hate it and can't wait to get rid of it.  Almost three years of my life has been messed up because of this situation.  I would have a completely different attitude if I had been in situations where I had suffered from disease and an ileostomy had saved my life or had improved my quality of life, but that is not the case.
After three surgeries, to try to repair my fistula I was very hopeful I would have my ileostomy reversed in mid-Feb. and this whole thing would be over and I could move on with my life.  I have been having pain in my rectum that is new so I went to my dr. he checked me out and said my external wound looked really good, but my internal wounds had a lot of healing to do.  He said I might have to have ANOTHER surgery to clean up some things in there before I had my surgery to reverse my ileostomy.  He wants to see me in four weeks.  I am just crushed.  I am so sick of this whole thing.  I've had three leaks at work and constently worry about this thing.  It causes me nothing but grief.  What probably bothers me more than anything is I keep having thoughs of how easy it would be to take all my xanax, vicodin, anti-depressants, etc. and just go to sleep.  I know I will not do this, but just that these thoughts are coming into my mind is disturbing.  I think about how I should just tell my husband to divorce me so he can have a normal life with a wife that he can have sex with.  With all the pain I have as a result from the fistula and surgeries, we have only had sex twice in the last almost three years.  He is not the kind of person that would accept that at all, though.  He has stood by me through this whole thing and never complained.  He's the best.  As an example, I called to tell him how upset I am that I couldn't go back to work after my appt.  I couldn't stop crying.  He said he is going to come and work from home the rest of the day to be with me.  It's not fair to him.  I'm damaged goods.  This is not what he signed up for. 
I know this is not for the rest of my life.  I know I just need to get through this and everything will be okay.  I'm just miserable.  Everything that has lead me to this point has just been compounded.  It would take me pages to detail everything that has happened to me medically and mentally. 
I'm just getting it out and I think this is helping.  Thanks for providing me a place to share my troubles.

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 1/24/2011 5:21 PM (GMT -6)   
Oh, Cecily. I'm so, so, sorry about the setback you've experienced. I can only begin to imagine how discouraged you must be feeling just now. My heart goes out to you.

Cecily, I'm really worried about the thoughts you've been having. These are very concerning, and are indicative that (as you already know) things are not going well with you, mentally. I really would encourage (urge; beg) you to speak with your doctor or nurse as a matter of some urgency, because it seems to me that you may be spiralling into depression and that you will need some help, quickly, to arrest this downward slide.

Please, Cecily, ring someone in your care team and ask for help. You shouldn't have to feel like this without some support and help from those around you.

A huge and gentle hug,

Co-Moderator Crohn's Forum.

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

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 1/24/2011 6:20 PM (GMT -6)   
Cecily~please call your Ivy6 said it's important to stop the downward slide.

On a fistula note, have you gotten a second opinion? My rectal fistulas were due to Crohn's so the fact that surgical treatment never worked for them was no surprise...but if yours are not due to an underlying disease they should be healing better than that.

If you have a teaching hospital close buy you should give a call to get things evaluated.

Stay strong!!
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!

Regular Member

Date Joined Nov 2010
Total Posts : 42
   Posted 1/24/2011 9:28 PM (GMT -6)   
I have  a regular shrink appt on Wed, so I will speak with her about all this.  I appreciate both of your concern and I completely understand it.  I would be too.  I'm not suicidal, but I am feeling a sense of desperation.  I am that person who everthing that will go wrong will.  I got on and wrote as soon and I got home from the drs office so that was a lot of raw emotion running out.
This whole fisula thing is just really unfortunate.  In the beginning, in about April 2008, I started having very bad pain in my perianal area.  It got the point where it just hurt to walk.  Of course I thought it was a gyno problem, so that's were I went.  That dr misdiagnosed me for several months and he thought I had vestibulitus (which is irritation of the opening of your vagina).  I tried steriod creams, estrogin, and even putting acid on the affected area with the hope it would burn off the bad skin and new, health skin would grow (most painful experiance ever!).  I got so, so fed up when after all that I called and told him I was still having problems and he wanted me to just come in, I wrote a two page letter detailing my frustrations and faxed it to his office.  He called my home personally in the evening and referred me to a urogynocologist, which is someone who specialises in urology and gyno.  This Dr. thought I had pelvic floor tension myalgia (meaning my muscles were too tight) after I had a series of very painful tests that shouldn't have been painful (urodynamics), but were because my bladder was so irritated from everything) and intersistal cytitus (irritated bladder).  This made perfect sense because I had a leakly bladder most of my life and as a child I was playing in some farm equiptment and fell on a chain between my legs.  The theory was my muscles tighted and they never learned to relax again.  So, I was getting physical therapy for that where the therapist actually put her fingers in and pushed on my vaginal muscules to try to stretch them out and I would also do a variety of stretches.  This went on for some time with to no avail.  I had this one particular spot on my perinium that was very sore and finally it wailed up.  My uro-gyno thought it was a cyst and I had scheduled a surgery to have it removed.  Two weeks before that, I had another one wail up adjacent to it.  At that point the dr took a culture and there was e-coli in there.  At that point we scrambled to get me to get a endo-anal ultrasound and an appt to see my colon rectal surgon.  By this point I had developed a MASSIVE abcess.  I had my first surgery January 2009 to open me up and let the infection drain out (they put a seton in there so it wouldn't heal shut - think a rubberband tied through the rectum through the vagina).  I was out of work for this 3 weeks.  I had my second surgery to try to close me up fix the damage in August of 2009.  I was in the hopsital for 5 days and out of work for 6 weeks.  I had a ton of stitches.  After that, it was a matter of trying to heal.  This whole time, my husband and I hadn't had sex.  Right now I'm 34 and my husband is 40.  We had our 5 year wedding anniversary in September 2008 and took this great trip to St. Petersburg, Russia, Estonia, and Latvia.  It was a wonderful trip, but it was dissapointing it couldn't have been more "romantic" and I was in pain too.   Around Feb 2010 I decided it was time to give sex a try and it was a rough start, but we did it (my poor husband was so worried about hurting me).  I started having pain and I developed an infection.  I took antibiotics and felt better so we tired again.  Same thing happened.  I went to the dr and he said it looked like I was having a reccurnce of a fustula.  I don't think it really ever complely healed up.  Now because I had so much scar tissue a more complicated surgery had to be done because stitches wouldn't hold.  It was determined to take muscle out of my leg and graft it in to my spincter and put in a temporary ileostomy to let everything heal.  It took a really long time to get it scheduled because my dr had to get another dr to do the leg portion.  Finally we  did fine a plastic surgeon to do it and I was supposed to have the surgery on a Thursday in October.  The Monday prior to that I got a call something had happened to the Plastic Surgeon and he had been injured and would not be able to do the surgery.  This was after  ALL the pre-surgery testing.  We found another Plastic Surgeon to do the job, but everything got pushed back 6 weeks.  I finally got my surgery November 10, 2010.  I was in the hospital for 10 days.  I was home for 2 weeks and I got really sick (I puked six times in 4 hours) and went to the ER.  I had the flu, but was admitted for observation for another 3 days.  I was supposed to go back to work (after being off for 7 weeks) the Monday after New Years, but got sick again (stomach cramping, and puking), so I went to the ER instead.  I had a very severe urinary tract infection.  I finally went back to work on Thursday, January 6th.  That first day I got a leak.  The following Monday I got a leak.  It was at this point I decided I would be wearing skirts until this was over because the buttons on my pants hit right over my stoma.  I also learned blueberries make my output very, very thick and it clogs up my appliance.  Apparently mangos and granola bars get stuck in there too (which I won't be eating anymore) because I had a really big leak on Friday after it got clogged.  It's just one thing after another.  I had chronic sinus infections for years prior to this until I finally found an ENT that would do surgery.  I spent years of - antibiotic, antibiotic, steriod,.. a month later repeat.  As I mentioned earlier, I have had a leaky bladder the better part of my life.  I also have a tremor.  For the most part, I am a very positive person and I have a good job where I help people and that makes me happy.  I have people who love me, so I know I don't have it all that bad.
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