Crohn's Flare & No Symptoms

Hello, I'm quite new to this forum. I was diagnosed with CD 14 years ago. When I was diagnosed I had all of the typical symptoms. Way too many BM a day, night sweats, Anemia/serious fatigue, loss of appetite etc. Since then, I have been hospitalised a few times but never have had surgery. I stopped taking Remicade when I decided to get pregnant 3 years ago. After child birth I decided not go back on medication because I have felt fine with minimal signs of flare ups (the odd instance of diarrhea but nothing serious).

When I say I feel fine, I mean I have 1-3 BM a day (albeit not usually solid), I don't have a loss of appetite, no night sweats, no cramping etc. HOWEVER, my GI wanted me to have a colonoscopy in October last year because my stool sample indicated that my CD was extremely active. So I had my colonoscopy and they couldn't get through my Ileum because of a stricture. So they sent me for an MRI last month and it has indicated that I had multiple strictures and fistulae. But I just don't understand how I don't have symptoms. I almost feel like their test results are mixed up with another patients. I obviously know what it's like to have a flare up and feel unwell so I am just curious to see if anyone else has had this happen? How is it that I can have multiple strictures but no cramping?

Since finding out this news I have put myself on a 'flare up diet' despite not feeling symptoms.

Anyone have any insight on this?

Hello & welcome to the forum. Crohns is a sneaky disease, while we may not have the typical symptoms, it's there doing it's dirty work. Yes, we have had members before that stopped their medications & had this happens. I don't think the dr has your records mixed up with another patients. I do suggest that you get copies of all of your tests & keep your own medical file at home. By chance do you have access to a patient portal where you can review your chart?

Strictures may or may not cause issues, it depends on the size. As for the fistula how big, where is it located? What is your dr suggesting for treatment? It sounds like you could possibly be in the calm before the storm. Personally, I would rather catch things early than have them get out of hand.

I don't know if having another MRI or a CT would be of any benefit. You can discuss this with your dr. Perhaps consider going back to your dr & have another face to face talk to discuss things further. I can tell you are still shocked with what the dr has told you. All I can say is never underestimate this disease. Also, if this is your proper name that you are using, I would suggest that you change your username to protect your privacy. You can change this in your profile.

Take care.

Sorry I forgot to answer some of your questions in my last post.

I don't have copies of my results at home. I will ask to see them when I'm in next month. I'm not sure how big the fistulae are, but they said there is no abscess. Dr said all strictures and fistulae are confined to my small intestine.

Drug treatments suggested are Humara and 2 other biologic treatments ( I cant remember their names! But we are going to discuss all options when I'm in next).

Also I for anyone who knows the OHIP system in Canada, I am aware that OHIP doesn't pay for prescriptions either. But I will be applying to Trillium for financial relief and can't apply for that until I have OHIP. All very complicated!

I'm from Canada, You're right in that OHIP won't cover your basic perscription costs. Many workplaces, especially if you work for the public service will have drug plans though that will. As @straydog mentioned, you could also purchase your own insurance coverage, again sometimes offered through a workplace and referred to as group insurance. Somewhat of a discount with enough employees on a plan, but usually still too expensive.

The Trillium Drug plan is an absolute God send. You don't really have to jump through hoops to get the coverage either. Your Remicade/Humira co-ordinator will help you through the process. There is a deductable, but considering the coverage, it's well worth it.

OHIP doesn't cover prescriptions in Ontario. All prescriptions are covered if you're 18 years old or younger. If your income is not sky high in Ontario, Canada sign up for the Trillium drug plan.
1. Eligibility. Only citizens living in Ontario, with a valid Ontario health card, are eligible for the Trillium Drug Program.

http://www.forms.ssb.gov.on.ca/mbs/ssb/forms/ssbforms.nsf/FormDetail?openForm&ACT=RDR&TAB=PROFILE&SRCH=4&ENV=WWE&NO=014-3693-87E