Hard time accepting my diagnosis...

[EmilyElizabeth]

I just got the Crohns diagnosis. Apparently it's done quite a bit of damage and it looks like I've had it for years. I am honestly floored. I thought that my GI would find that I maybe had a little bit of UC inflammation or something, not tell me I have severe scarring and should go on Aza right away. I've been healthy and active my whole life and have only had symptoms in the past year and not the extremely sick, needing hospitalization kind. OK so I've lost weight and am underweight even though I eat alot, but I've always been thin. I have a perianal fistula which is the one thing that is really interfering with my life. I have had strange gas pains, abdominal cramps and bloating this past year, and 3-4 BMs some days instead of 1. But lately I've altered my diet to the lower fibre/reside and I've been feeling pretty good this past month or two! ..Maybe I mentally normalized my symptoms over time.

Has anyone else been diagnosed while in a (sort of) remission? I feel like a generally healthy person with few digestive issues. I think that's why it is so hard for me to put myself in the category of a "chronically sick person" who needs "potent drugs."

 

[Angrybird]

It is possible to not feel that bad whilst there is plenty going on inside. This happened to me last year - when my GI first told me about my stricture I was really shocked as at the time I only had tummyaches. It was only in the following months until the op that my symptoms got worse and worse.When are you due to start the Aza?

AB
xx

 

[EmilyElizabeth]

Hi Angrybird! Interesting to know that you were surprised by that too. I really thought that my body would have to be extremely sick and in pain as a warning for that sort of damage to be going on inside! I wonder if I have a stricture; the next thing I have to do is an upper GI so he can see if there's damage in my small intestine as well. I have the info on Aza and I guess I just have to give the go ahead at my next appointment.. how did you do on Aza and 6mp? Do you think it's odd that he doesn't want to put me on an anti-inflammatory(pentasa) to start? I'm trying not to be a baby about all of this but I'm still in the shock/ disbelief phase :S

 

[michaelearnest]

Emily, welcome to this forum. Sending lots of good luck your way, Never Give Up on your Gut. I preferred the pentassa, but it stopped working for me.

 

[EthanPSU]

Hey emily, well its good (sort of) that you were diagnosed in a semi-remission. When I was diagnosed I was doing horrible. I was like so underweight and so sick I couldnt get out of bed. Anyways I hope you get it completely under control. And also, dont be against potent drugs. I feared the thought of it when first diagnosed but honestly it's not bad at all!

 

[723crossroads]

I just got the Crohns diagnosis. Apparently it's done quite a bit of damage and it looks like I've had it for years. I am honestly floored. I thought that my GI would find that I maybe had a little bit of UC inflammation or something, not tell me I have severe scarring and should go on Aza right away. I've been healthy and active my whole life and have only had symptoms in the past year and not the extremely sick, needing hospitalization kind. OK so I've lost weight and am underweight even though I eat alot, but I've always been thin. I have a perianal fistula which is the one thing that is really interfering with my life. I have had strange gas pains, abdominal cramps and bloating this past year, and 3-4 BMs some days instead of 1. But lately I've altered my diet to the lower fibre/reside and I've been feeling pretty good this past month or two! ..Maybe I mentally normalized my symptoms over time.

Has anyone else been diagnosed while in a (sort of) remission? I feel like a generally healthy person with few digestive issues. I think that's why it is so hard for me to put myself in the category of a "chronically sick person" who needs "potent drugs."

Yes, when I was diagnosed, I had been just having a tummyache for like 6 months, never suspecting crohns. I had had a colonoscopy 2 years before and had 2 polyps removed. But looking back, I had many episodes throughout life when I was flaring and didn't even think of anything other than IBS or flu. Never thought of crohns. But, once diagnosed and after having gone into remission for months, I realized the difference. Then when I had a flare, it was obvious what it was then. I am doing better now because I quit eating any foods other than real whole foods. Nothing man made or processed. Also taking probiotic- multienzymes with every meal. Helped me alot. Also I take fiber everyday now too. Some people can't I know. But, it works for me. Hope you get better soon!:heart:

 

[KatyBuckeye]

Hi Emily, I was also really shocked when I learned my diagnosis. I never really considered myself to be that ill. I honestly thought that I probably had celiac's disease, at the worse. Crohn's certainly never crossed my mind.

Please do lots of research before just accepting the doctor's recommendations for treatment. The doctors will say that diet doesn't make a difference, but it certainly has for me. For myself, I'm not completely against management with potent medications, but I consider it as a last resort, after all alternative treatments. I'm also newly diagnosed and I want to try all of the low risk treatments- diet, supplements, stress reduction, low dose naltrexone- before proceeding with more potent medications. My disease is currently mild and I don't have a fistula, so I can afford to do that. Even if you do start on Aza right away, keep doing research into non-pharmacologic management. Diet, especially, can make a difference for a lot of people! Good luck.

 

[amyh]

Emily-

I was recently diagnosed as well, and my symptoms were pretty identical to yours. I had a stricture when I had my recent colonoscopy, but only had symptoms for about a year or so. My body couldn't handle Aza, but my GI put me on Remicade. Before I actually started Remicade, I changed my diet, and actually all my symptoms went away a week before the remicade. My GI wants me to stay on the Remicade to keep it in remission.

 

[EmilyElizabeth]

Thanks everyone! Michael, I guess maybe my GI has the experience to know that for me pentasa would only be a very short term fix? Ethan you're right I should be thankful my symptoms aren't so bad even though I have it!
Crossroads, Katy, Amy- it's so nice to hear from people who had a similar experience. I always brushed off my stomach problems because I know people have them all the time. I think I had one flareup a year ago and had no idea what was wrong with me, just pain, went to the ER, they said I'm perfectly healthy and sent me home to take antacids. Got better in a couple weeks but never 100% since then. I've always tried to avoid medication since I've hated being on any sort of it, even birth control pills. I'm doing the lower fibre reside thing and it's helped, and I have probiotics but can't really tell if they work or if they're even the good ones. It's hard to navigate the diet, supplement, alt meds when docs and GIs have no faith in them and no advice to give. Amy I am worried about tolerating the Aza too because I'm sensitive to meds and always get the side effects But if it will prevent me needing surgery and help me gain some weight then I have to give it a shot. Thanks again everyone I hope what you're doing keeps working for you :heart:

 

[Angrybird]

Pentesa is usually used for mild disease so it could be your doc thinks something stronger is needed. My tum did well on the Aza but both times I was on it, it caused issues elsewhere with side effects. Currently doing well on the 6mp though.