Anyone just manage their illness w/out meds?

I would agree that sometimes the drugs don't appear to be much help,but it's difficult to know how much worse we might be without them.I can't say I've ever felt that a med was making me worse though.I realise some people have intolerances to certain meds,but they are an unfortunate minority.

I know how SoIGotIBD feels. I have a new diagnosis of proctitis. My first experience of the British Gastro Dept was of a medic asking me what I wanted to do and what medication I wanted to take - before even giving me feedback about my investigations or confirming I had a diagnosis. Professionals do not seem to have any answers. How can this be? There must be research going on somewhere in the world.

I completey missed this thread from 2010...how odd...anyways, now that it's been brought back up, I'd like to chime in a bit...

I have crohn's (mainly affecting my colon) I have had it for 21 yrs and been considered moderate to severe in all these yrs and have not been on meds (other than pred a handful of times until it stopped working all together) my point is, I've been RX med free for the majority of my 21 yrs of having IBD and still no surgeries...I'm either allergic or non-responsive to the oral meds...I only started using "naturals and diet altering" a few yrs ago with some relief but I'm still flaring (I should add I do have some complications with my perianal crohn's skin tags that are interfering with me finding a full remission) but bottom line is, not being on oral RX is not a death sentence. There are others besides myself that are allergic/non-responsive to RX meds too.

In no way am I suggesting people ditch their meds, just sharing my experiance of not being able to take maintenance meds is all.

I know Somedude...the first 2 yrs I was sick it was affecting my small intestine, colon, rectum and anus all at once...it was not fun but I still somehow consider myself a little lucky in some ways.

Mine spread. It starrted in the upper with mild UC and now 15 years later it has enveloped my entire colon with full blown pancolitis. SO mine spread and got worse over time and it was partly because the traditional medicines did not work for me and the doctors were not quick enough to get me on other meds early on, they let things linger for too long IMO

maybe this has already been addressed, but the severity of uc seems to be a factor in remission results - so can someone please define what small, medium,large, and super size severity look like ? is it mild if it can be controlled by diet alone ? if it's severe, will it never go into remission no matter what the treatment ? is severity measured by the amount of colon involved ? a while you're at it, what is the meaning of life ?

Post Edited (soystud) : 9/11/2012 9:35:31 AM (GMT-6)

crap darn...didn't know UC could be gone in 2 months as per the newest member samoy. Methinks not.

Everyone finds their solution be it meds, diet, diet/meds, alernative, surgery. I can't see suffering any longer than necessary...and that includes symptoms, medications, diet.
q

quincy said...
crap darn...didn't know UC could be gone in 2 months as per the newest member samoy. Methinks not.

whatchatalkingabout...

ofcourse it can go away in 2 months.

Example:

There is this member on here called." I love coffee. ". He was diagnosed and all...then he went in a 10 year remission with no drugs no nothing eating mcdonalds and stuff. So there you go. Ask him, you'll see.

To answer soystud's question about severity:

This is not always the case, but generally speaking the more colon that is involved, the worse your symptoms are. So people with only proctitis tend to have milder symptoms, and people pancolitis usually have severe UC. That is not to say their symptoms are ALWAYS severe... as the meds treatments start working, inflammation and symptoms will die down. And of course there are exceptions to the rule - I have heard of peeps with only proctitis (rectum only) show pretty severe pain and urgency, bleeding, etc. But here is my personal description of what the severity levels look like...

MILD: Not very many symptoms, not much inflammation. *Maybe* a small amount of mucous and/or blood. Not much urgency, 1-7 BM's a day, maybe a little loose but not diarrhea, hardly any pain.

MODERATE: A little more inflammation and a few more symptoms. Probably both blood and mucus several times a day. Some urgency, 5-12 BM's a day, loose stool bordering on diarrhea, some pain.

SEVERE: Bad inflammation. Frequent blood and mucous and lots of it, urgency at every BM, 10-15 BM's a day, very loose stool or diarrhea, frequent and severe pain (before/during every BM, sometimes in between).

"SUPER-SIZE" SEVERE: Severe inflammation throughout colon. Tons of blood and mucous, urgency at every BM (including accidents), 15-20+ BM's a day, all liquid, frequent and very severe pain... debilitating and usually requiring hospitalization.

Veterans, feel free to correct me or chime in. But the biggest rule of thumb is that every case is always different. Some people with severe pancolitis can control it with meds or other treatments; some can not. Some people always have every symptom, some only ever have one or two symptoms.

In my situation, my condition was pretty mild proctosigmoiditis for most of my life. My only symptoms were occasional bloody mucous, and that's it - nothing that interfered with my quality of life, and easily controlled through mesalamine pills for maintenance and enemas for flares... for fifteen years. Two years ago it spread to my whole colon, symptoms got completely out of control, and I have not been able to attain remission through ANY drugs, treatments, or lifestyle changes since. At one point I was at the "SUPER-SIZE" SEVERE level, but right now I have been jumping back and forth between the MODERATE and SEVERE levels daily. The only drug that seems to help at all is prednisone, but I can't stay on that forever. Hence, the plan for surgery.

some people can say little in a lot,
some say a lot in a little,
some say a lot in a lot (that be you, bs) thanks for your clarification - sorry that all your effort that has gotten you to this point - but at least you do have an option - i sincerely wish you success with your new life -