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hi there,

my name is staci and i am a new member.  my husband has suffered with bowel issues for probably 10+ years.  years ago when it first started he had blood in his stool and had a colonoscopy done.  at that time they found a juvenile polyp, diverticulitis, proctitis, and was told he had irritable bowel syndrome.  the doctor sent him away and told him to eat a high bran cereal and yogurt and that would fix him right up.  his experience with the colonoscopy was so bad.  he woke up in the middle of it and remembers it clearly.  a year later he was still bleeding.  the doctor told him he would need another colonoscopy.  well after how bad the first one was he wasn't going down that road again.  after a while his symptoms died down and he wasn't too concerned.  he would have bought of diarrhea and blood from time to time but again he just blew it off. 

fast forward to 2013 and all *** broke loose.  he was having diarrhea 10 to 15 times a day.  most of it blood and mucus.  he was taking immodium ad and going through two bottles a week.  it got to the point where the immodium wasn't even doing anything anymore.  he decided to bring this up to his new gp as he really likes her.  turns out she is a gp but she is from the middle east and while there her specialty was gi issues.  so she really understands the situation really well

 Reply posted for oldsgal.

Your husband needs an expert GI in IBD, not some GP, that's not good enough.  I don't know what geographic location you are in, but here are some of the top GI/IBD hospitals:
Brigham and Women's, Boston
Mt. Sinai, NYC
UNC, Chapel Hill, NC
U of Chicago
Mayo Clinic
UCSD, San Diego 

There are more, but those are the ones I can think of off the top of my head.  Let me know if none are near you, I can list some more.  

 Reply posted for oldsgal.

I saw the title of your post and thought you would be a good person to talk to. Man this disease just sucks. I'm here for you to vent if you need!

 Reply posted for oldsgal.

Part 4

The stress of being out of work and not being able to job hunt is stressful which does not help the situation.  I keep telling him to not worry about money or work right now.  Only worry about getting rest and healing.

To top this all off he also suffers from mental issues.  He has cyclothymia which is basically a mini form of bipoloar disorder.  He is medicated for that as well.  He is so depressed right now from all of this.  How does a person keep there spirits up.

I mean at what point to we look at this realistically and consider that he may not be able to ever get back to work.  I am scared that he gets this flare under control and finally gets a new job only to flare again and be fired once again.  That would be a huge shot to his ego and self worth.  Oh and he works construction by the way so never a toilet handy on the job sites.  He often has to drive to a local fast food establishment or gas station to go and hope he doesn't have an accident on the way  either traffic wise or bowel wise.

Uggggg I just realized I spewed forth a lot all over you guys in my first post.  That can't represent me too well.  But I am just at my wits end.  I am trying to hold everything together and it is so hard.

Staci

 Reply posted for oldsgal.

Part 3

Three weeks ago he started to flare.  Well actually he was flaring for some weeks now but he didn't head the warning signs and ignored them.  It was too late.  Three weeks ago he was laid up in bed for a week with agonizing pains in his abdomen, feeling completely blocked yet still running to the bathroom 20 times a day with nothing coming out but blood and mucus and it hurts so bad to sit and strain that he almost passes out.  He runs low grade fevers and has no energy at all.  After a week of this he did go to the GP and she put him on Pred for a week.  Hubby then got back to work after being off a week to only have his employer of 18 years fire him.  Claimed company was restructuring but we all know the real reason.  His illness.  The stress of losing his job has spiraled him into an even worse flare.  He can't get off the couch much in the past three weeks.  The GP has now added Rowasa enemas since he isn't responding to the Pred, Lialda, Amitriptyline cocktail.  He is very insignificantly better after two days of the Rowasa.  I really really want to see more results faster.  It is breaking my heart to watch this.  I feel helpless since there is nothing I can do.

 Reply posted for oldsgal.

Part 2

She ordered a colonoscopy on him and promised his experience would be better this time around and sure enough it was.  However, they could only scope the first 1/4 of the colon as it was so ulcerated that she was afraid she would perforate the colon walls if she made that first turn.  She put him on Asacol and Prednisone then switched him off of Pred and onto Budesonide and from the Asacol to Lialda and added nortriptyline.  He wasn't getting perfect yet and as a result of the steroids he developed a very bad case of thrush in his mouth that was down his throat.  She started to worry that maybe he might have crohns both up the rear and down the throat and wanted to get a specialists opinion.  So off we went to a therapist who did a colonoscopy and an endoscopy on him to see how things were progressing.  Low and behold the GP was on the right track.  His colon was immensely better and actually looked nice and healthy pink.  He was healing!  And the endoscopy came back clean and he confirmed it was just thrush from the steroids.  He kept him on the same meds that the GP had him on but changed the nortriptyline to amitriptyline.  Eventually they weaned him off the Budesonide.  That was in March of 2013.  His official diagnosis is UC.

He was going really really well from March on.  The specialist said he didn't want to see him back for three years for a follow up colonoscopy unless something came up before then.