Possible newbie to Crohns. Looking for some advice please!

Hello all,

For the past 6 months I've had diarrhea like bowel movements about twice a day with a very little amount of blood half the time. It all started on the first day of a vacation and it has gotten a little better on its own which makes my doctors think it's not Crohns even after colonoscopy. First few days were horrible and it never got anywhere close to that again. Very odd.

Got my colonoscopy done and it showed some mild inflammation (just looks a little red) around the sigmoid colon and some ill formed granulomas were found there in biopsy. Granulomas have not been found anywhere else. Docs think i had some weird infection or illness and my body is still getting over it and should go away soon. These are very experienced doctors who told me this too but it did seem weird to me still.

I had an upper endoscopy and small intestine looked good there and nothing was found with granulomas.

He put me on Metamucil and that has helped quite a bit actually but I'm still having some problems. A lot of my bowel movements are solid now because of the Metamucil but there's room for improvement and still see a little blood sometimes. I have never eaten a vegetable my entire like (26 years old) so I never had much fiber until now.

Got a 3rd opinion and that doctor told me he thinks it's a very mild case of Crohns and said I can wait a few months and then take some Lialda. I can then get off Lialda and see if it comes back to confirm it's Crohns.

I'm grateful that I have no pain or really any major problems but I am terrified after reading up on Crohns on here and across the Internet. So many of you seem to have to get surgeries and go to the ER. It just makes me feel so uncertain about things because like I said, mine is so mild but I'm worried it could spread to small intestine and get worse. Doctor told me there's a low chance of that happening but still I have no idea. I'm just worried. I have basically 2 symptoms in a mild way. Makes me wonder if medications could only make things worse with side effects. Again, the worst part of all of this for me is the anxiety about it.

Any thoughts in general for me? Words of optimism would help my health anxiety a lot I think.

What is general medication route of its very mild Crohns?

Thanks!

Post Edited (Solidsimpson) : 2/2/2016 2:14:12 PM (GMT-7)

Thanks!

My deductible unfortunately is very high so doing another colonoscopy this year would suck financially. I haven't done any blood testing yet so maybe I should do that.

Is Lialda succesful in getting people into remission who have a mild case?

I am just so confused about what to do since my doctors all have different opinions on whether i have the disease or not. It is hard to know who to believe!

Post Edited (Solidsimpson) : 2/3/2016 9:35:08 AM (GMT-7)

Its really hard to tell with this disease from my research and experience. I too was diagnosed with mild chrohn's 8 years ago (Im 42 now) and was on remission with barely any inflammation for the last 6, the first flares we;'re also relatively mild and resolved by themselves.

I've just had a moderate flare now and it "seems" worse than what it was, but the colonoscopy shows mild inflammation. I'd check with your doctor regularly and take their advice. Blood work, follow up colonoscopys & other tests to be safe.

I'd REALLY REALLY REALLY recommend though that you change your diet and start taking nutrition seriously. There are TONS of good nutrition resources out there so checkt hem out. I adhere pretty closely t the ZONE diet when Im not flaring. Low fat meat and lots of Vegs/fruits. Everyone is different though so check for possible trigger foods and stay away from them. As a good rule of thumb stay away from soft drinks/coffee/high sugar processed foods. But again thats up to you.

Also, I found exercising regularly kept my chrohn's in check, so that is another lifestyle change you NEED to make.

Hope this helps you!

If you do not have prescription insurance, then go to the drug company's website. They often have subsidies and discounts if you don't have coverage that you can apply for

Lialda can be effective for mild Crohn's. Some studies show that it's not much more effective than placebo, but I think that applies more to mod/severe CD. It is pretty effective with UC. It's worth a shot. I personally never had success with it.

I have been drinking 16 oz of vegetable juice everyday and take multivitamins to try to keep me in check!

Also, sorry if this comes off as dumb or naive. I am trying to be as optimistic about this new DX as I can. It seems to me that for the most part CD maybe isn't that bad? Maybe because my symptoms don't bother me that much. My perspective is that I will find a pill that will put me into remission and then I can potentially stay in remission for years or until a cure is found. Am i looking at this too naively? Its so hard to gauge because so much I read is very negative. I guess it all depends on everyones individual symptoms.

Honestly, you are right - CD isn't all that bad if you can find a good med to keep you in remission for long periods of time. That becomes a lot of trial and error at the beginning, which can be frustrating when you feel crummy and are hurting. But we finally found a good Remicade dose for me (double the regular and every 6 weeks instead of 8), and for the first time in 6 years, I got into remission that has lasted for almost two years. I'm now 30 weeks pregnant and flaring a bit from that, but that is more just hormone changes and struggling to keep hydrated as opposed to Remi not working. I don't think you ever get back to 100% with CD - you still have colds lasting a bit longer than the norm, feel a little more tired and can't do as much as you used to, etc., but overall you can live a pretty good life. Again, this is getting a good med and getting into stable remission. I think that since yours is mild right now, you'll be able to get to that. I don't think it's naive at all. Naive is trying to find a CURE.

Prednisone is NOT a maintenance medication. It works wonders for getting out of a flare, but it is really, really hard on your body and can do it a lot of damage if used long-term. So I don't think they'll do prednisone.

Remicade has been great, but it is mostly for moderate-severe Crohn's, not necessary for mild if it can be controlled by lighter medications.

Yes, symptoms can suddenly become awful, but honestly, that can happen even after years of remission and finding your perfect drug. It takes some time, but eventually you realize that you can't let that fear overwhelm you or make you paranoid. As long as you are being proactive about your health (which you're doing, meds and education yourself), you almost have to let the rest of it go and focus on the now, not the what-ifs.

Drugs have definitely improved in the last 10-20 years. Honestly, I am doubtful about a cure being anytime soon. There is a lot we don't know about autoimmune diseases. Any cure wouldn't just be for us, it'd be for lupus, MS, etc. that are all autoimmune, because that's where it all stems from. It's kind of like a cure for cancer. There is a lot we know and better ways to treat it, but there is a ton we don't know. And once we know it, controlling and preventing it is another large step. I am not trying to be pessimistic, I would love a cure, but I had to decide to not expect one and live my life as if it is always going to be this way. It's the only way to be happy in the present, at least for me.

The percentages don't matter when it's you. I remember when I was first diagnosed I was obsessed with reading everything I could find. Then I learned to settle in and move forward. I still end out over-reading articles when I'm sick. Uceris and Lialda are basically the same drug so your plan seems a little weird, but don't worry about it. Maybe the Lialda will work and it will be many years or forever and you'll never get worse.

I'm currently in remission with the Crohn's after re-section surgery and I'm on no Crohn's meds because presumably there's no active disease in there. I'm having a colonoscopy soon to see if that is correct. For me Crohn's may come back today or 10 years from now....who knows? I also can get hit by a bus today. Learning to live in the present and deal with real problems instead of worrying about "what if" is the most important skill to learn with this disease!

Sometimes I feel like I'm the only person on this forum who didn't obsess over their diagnosis. I can't imagine obsessing over incredibly mild symptoms that aren't interfering with your life, because I never did it myself. Obviously if my disease had started off severe, it might have been a different story but it didn't: it started off extremely mild and stayed that way - symptomatically at least - for another five years.

I was utterly clueless in other words. But what good would it have done me if I wasn't? I probably wouldn't have been able to alter the eventual outcome, because there is no evidence that any medication - except for perhaps biologics and it's too soon to really tell with those yet - alters the natural history of IBD, i.e. those who are gonna need surgery still need surgery.

Frankly I wish I could go back to those days of not giving a darn. Crohn's is gonna do whatever it does, and you spending hour after hour researching it isn't going to change that. I did eventually reach that stage of obsessive research and it didn't change a thing, other than making me know more about Crohn's than most doctors.

Solidsimpson said...
Sounds like a lot of you guys were fine for first 5 years and then it got a lot worse. That is a big thing that concerns me.

Why?

What does worrying about it for the next 5 years do for you, while you could be out getting on with your life unimpeded by pain, serious diarrhoea, etc. in the meantime? Seriously, what does it actually do for you? Are you hoping by worrying it won't happen? Well, if that's what your genes dictate, it will. Meds might delay it, they won't prevent it entirely.

I've a brother who's had Crohn's for 17-18 years. In remission for nearly the whole time, no surgeries, no hospitalisations, no biologics. He just got on with raising a family, working a full-time job, and so on.

Luck of the draw, ain't a thing you can do about it, apart from take your meds like a good girl or boy. And even then, half the time they don't work or eventually fail. Genes matter so much more to your prognosis than meds do.

Thanks guys! I always had a lot of health anxiety so now that I might actually have a chronic illness it kinda set me off in my mind.

Would be helpful if I even knew for sure I have it. There's just so much uncertainty.

Your doc seems like he is taking you seriously and his advice sounds good to me. It is true that many docs don't treat very mild Crohn's because the mesalamines are not that effective and the other meds are overkill. If your symptoms get worse, you will know about it and go back to your doc. Try not to worry.....you can't control this, so you need to let the worry go.