Stopped medication - suddenly symptoms gone?

Hi all,

This is my first post here so be gentle - I've been reading these boards for the past year or so, every time I have a question to Google about my disease(s).

I'm 25, I was playing hockey last spring and took a hard shot - right to my testicle. It ended up fracturing my testicle and I had surgery. about a week after surgeyr, on the mend, I developed a lot of diarrhea - this went on all summer, until August when I finally saw a Gastro doctor. He sent me in for a colonoscopy and I was diagnosed with colitis - right side. The doctors never decided 100% if I had Crohn's or UC and I'm still not really sure.

I started on Asacol which helped right away - I had more formed stools and less urgency - it was livable, but still uncomfortable. I tried gluten free diets etc which helped minimally but not very much.

After my insurance deductible reset in January, the Asacol became too expensive $700+ per month - and I went on Colazal (generic). Colazal was awful - I had intense urgency the SECOND I woke up and didn't have a formed stool the entire month that I was on the drug.

I ran out of Colazal a week ago Saturday. I stopped taking it altogether and decided I'd just bite the bullet and buy the Asacol prescription...

A couple days passed and I wasn't having symptoms. No urgency, no cramps, no diarrhea. I was even a bit 'constipated' for a day or two. I continued to wait it out - I started having 'normal' bowel habits. Formed stool, 1-3x per day, no urgency upon waking, not much cramping or any other kind of pain.

I'm on week 2 of this - I have taken a tiny bit of prednisone (2mg or less) per day just to maintain and as a 'safety net' type of thing. I am still feeling much better ( I don't have to leave work to use the bathroom 2x per day, no cramping, less anxiety).

I don't really know what's going on but if you guys had ever experienced anything like this or if I should really be worried about something awful happening in a day or week or month.

I also have supplemented with slippery elm root a bit but not regularly enough for me to thank it for this change in condition.


Thanks!

Stephen

Thanks for your reply. What steps should I take to ensure that I stay feeling well for the future?

It could have been the medication but who knows for sure?   How long were you on asacol?  You say you are taking bits of prednisone.  I'm wondering if that is what is making you feel better?  Hope you will be able to maintain your remission once you come off them.  Best of luck.

Somedude said...
Whoa....you must have been hit hard to require surgery on the balls... It must have hurt like a motherf....balls on guys are sensitive enough to a light touch..I cant imagine getting hit that hard to need surgery..

Did you fainted or something..

No, I actually finished playing the game (hockey players are tough!). I was on my knees by the last minute. My scrotum swelled immediately and I had to limp to my car, I didn't go to the doctor for a couple of days after. I had a hydrocele for 2 months before surgery, which was an avocado sized lump of blood in my scrotum around the damaged testicle.

It was painful, yeah. But the colitis/crohn's/whatever afterward has been much worse for my quality of life.

The PA at my gastro just called me - she was responding to a request I submitted for a refill of prednisone 'just in case of a sudden flare while off meds'

she immediately reiterated that I shouldn't be off drugs completely and that I would be at risk of developoing a fistula.

The only issue I have with this - I felt absolutely AWFUL on Colazal - urgency, diarrhea up to 8x daily, no matter my diet, waking up int he middle of the night, cramping, anxiety

and now I feel almost perfect. I have solid stools for the first time in months. I have a little bit of minor stomach irritation that I can feel but I am using the bathroom 1x or 2x a day now - and the urgency is almost gone.

I am having a hard time just saying 'screw it' and going back on $750/month meds when I'm having such a good quality of life at the moment.

Thank you for that! What kind of probiotics do you recommend?

I think they have decided it's Crohns - so i'm playing with a loaded gun by being off meds even though I feel much better? What kind of damage can happen to me like this?

Mayo has a good list of the complications that can occur if Crohn's is left untreated. http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=complications

Make sure to read the other health problems section at the bottom. My Crohn's was not treated for 30 years and this is the list of problems I have had outside the digestive tract: multiple kidney stones, iritis x3, loss of all nerve endings in my feet and lower leg [can't feel the floor, feel slivers,etc.], death of 30% of each femoral head [called avasculor necrosis, osteoporosis, anklyosisng spondylitis [my joints are trying to fuse].

It's hard to say what will happen if you just stop taking meds when you feel well, but I do know that Crohn's is a lifelong disease, and that eventually you will have another flare up. When I had my first, relatively mild flare the drs treated it with steroids and bowel rest in the hospital. After I was released, I tapered off Prednisone, felt good, and decided to stop taking my Asulfadine as well (that's about all they had to treat CD in the 80's). One year later, I had the worst flare in my life--fistulas, surgery, temporary ileostomy, the whole 9 yards. I was in the hospital for 2 months and had to miss a semester of college. I don't know whether going off drugs caused me to have a worse flare or not, but you can bet that I will never leave my Crohn's untreated again!

That said, I agree with dorri that I'd be careful with the prednisone, and that I work with my dr to find a balance between symptoms, disease activity, and negative drug side effects. It might be worth seeing your dr, and since you seem to be in remission, seeing if you can switch to the safest maintenence drug you can afford. I don't think that Asacol has many negative side effects, and if you are like me, you're going to eventually hit your deductable anyway, so it might make sense to just bite the bullet...

My doc did call me, she wants to put me on Lialda, which I haven't tried yet - she said there is a patient assistance program, since the Asacol HD i was on is $750+/month. I guess I will try it - I still feel pretty good, using the bathroom 2-3x per day and pretty solidly (tmi, sorry!).

Does anyone have a recommendation for some probiotics or supplements? I take slippery elm root and a mens vitamin already.