New here from Sacramento, CA

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Jan 24, 2009
Messages
12
I guess now that its been a couple months since i was first diagnosed, i can see the beginnings of the disease starting about a year or two ago.

Seems as though about the time i had moved into the Sacramento area (from the SF bay area where i grew up) i started having more and more frequent bowel movements, many of them loose and wet. After i noticed a trend, i tried changing my diet, and other minor problems, but fell back to just dealing with it, figuring it was not important enough to see a doctor. Finally, after about a year, i went in for an asthma related flareup and asked the doctor. He gave me a take home kit to monitor bowel movements to check for blood in the stool. All tests came back negative, so i figured nothing was wrong.

Jumping ahead to 4 months ago i began having extreme abdominal pain. It got worse and worse until about 5am when i finally went to the E.R. After 2 days and many x-rays and a CT scan, i was diagnosed with a "small bowel obstruction" and after 5 total days in the hospital i was let go, with a referral to the G.I.

The G.I. visit went routine, he ordered a blood test, and decided not to do a colonoscopy.

About two weeks later, i was back in the E.R. with the same symptoms. This time the same x-rays and CT showed an identical small bowel obstruction. This time a colonoscopy was performed, and i was diagnosed with Crohn's.

Initially, pain medication, and an immediate remicade infusion was givin. After a total of 7 days in the hospital this time, i was let go.

Spoke with G.I. again, the prescribed me with Norco's for the pain, and a continuing remicade treatment....

The pain had gone from mild to severe and back again several times, and now that i just had my 3rd remicade treatment, the pain has gotten slightly better....

On bad days i have been taking up to 12 norco's... while good days seem to be about 3-4... My doctor is now accusing me of becoming "dependent" on the drug, and that my "addictive nature" ( i smoke cigarettes, and used to do hard recreational opiate drugs) and is wanting to get rid of my norco's and gave me some new thing called nortriptyline. From what i have seen, this is an anti-depressant and given to children with bed-wetting problems.... It also can be used for mild to moderate chronic pain, as an off-label use.

I discovered this website today while looking under a Google search for Pain medication for Crohn's. I'm glad to be a part of your community, and hope to do a lot of reading and learning over the next few weeks.
 
Hello, and welcome to the forum.

I am somewhat surprised that your blockage has not been surgically removed. Is it not bad enough for that yet?

I hope the forum can be of some help to you. I learn a lot here.

Dan
 
Welcome! I, too, am surprised the blockage hasn't been removed, but I have no experience with that. It's clear you've been suffering though, so I guess that's what really surprises me. I hope the remicade works for you.

Stick around -- you'll learn a lot!
 
From what i understood, the blockage corrected itself after a couple days of not eating, and the cocktail of laxatives they gave me... said it just swelled up so much it made a blockage.... Maybe that was what the tube was for they put down my nose and into my stomach, it was constantly under vacuum sucking anything out. They called it an "NG" tube.
 
Welcome!
I am from the SF bay myself.
Also had a blockage that went down with drugs, so no surgery needed for that.
What I've learned over time- trust your body, not the doctors or test results.
If you're in pain and can't get an answer, get more tests, get another doctor
/second opinion. Wish I would have known that from the start.
 
i just did....

transferred doctors to the roseville, ca kaiser.... we will see how the new guy will treat me and my disease.
 
Wow...sounds like you've been through some tough times. good to hear you've got a new Doc...some docs are nothing but a PhD. I agree that maybe narcotics are not the best for someone that has a history of addiction...but soemtimes they are necessary...and if that works for you, the doc shouldn't be holding them back from you.

My surgeon had told me when they found I had a blockage that they will try NOT to operate if at all possible...so as long as the blockage isn't chronic...you may be in the clear for now, surgery wise...

hope the new doc gives you some solid plans. :):)
 
Kaiser...there lies your problem. I am cursed with Kaiser myself.
Though fortunate to have received a referral to Stanford, too.
 
I've had also 2 blockages that went away by prednisone, hospital stays and a liquid diet. i'm now on more or less a low residue diet to try to avoid having this again....
 
Thats what they had told me when i was in E.R. but my GI doctor told me that there is no direct connection between food's you eat, and blockages... so i went back to what i always eat. Havent found anything in particular that causes pain or constipation (other than the numerous pills im on)
 
Your doctor is wrong on the food and blockage. It may not be typical but it happens to me, in a very specific, repeatable way.

I had my stricture removed and I can swell up my small bowel if I eat either onions or malt. It will stop all food from moving for a few hours making me ill. Precisely the same symptoms that I had prior to my resection. I use Activated Charcoal if I accidentally eat either of these to help relieve the swelling. If I avoid both of these foods I have no problems.

Excessive Coffee combined with lots of high acid foods can cause a lesser but negative reaction for me also. At my pre-op worst, I could tolerate no coffee what-so-ever.

My first episode of this, prior to diagnosis, occurred after eating Onions also. I remember the meal because I thought I may have contracted food poisoning at that time.

A food log could help you detect any food that may trigger such an episode. Or at least rule out that possibility.

Dan
 
I ruled out taco bell so far. Not sure exactly what it was from there, i had spicy chicken stuff, a bean burrito, beans, rice, and chips. No more than 30 mins after eating, severe pain.. lasting for about 10 hours total... then it was gone and hasn't returned. One previous time i had about the same thing, same deal... So taco bell, or at least the food i normally order is out...

The food diary is a good idea. How do you all keep it in order, or organize it?

Seems as though just about any asian food hasn't given me any problems... and i cook asian often. Anyone have problems with asian cooking? or maybe its just because i cook it all myself... come to think of it, i dont think anything ive personally cooked has given me any grief.
 
hey dark
just figured id say a quick welcome. no special advice for ya yet, sorry!
i have a fear of taco bell too. soo yummy. but scary. ive found the litttle cheesy fiesta potato bowls to be ok though :)
see you around!
 
My new primary care has switched my pain meds to a stronger cocktail. 20mg 2x a Day of oxycontin with oxycodone w/apap 5-325 in between as needed (in which im using about 2-4). Seems to be better than 8 norco's....

His thinking is stronger and less is better than weaker and more. I tend to agree... i feel like less of a junkie taking less pills.... The last two weeks have been more or less pain free. or at least less in severity.

i hope someone else has some recent good news.
 
Since you live in CA, have you considered using medicinal cannabis to control pain? In my previous experience, it worked a lot better than any opiate based narcotic. It is also a lot less addictive than all the opiates.
 

Latest posts

Back
Top