Does severe UC ever return to moderate or mild?

I have moderate-severe pancolitis and was wondering if all my future flare are going to continue to be this way. 

When I was diagnosed it was very mild but quickly advanced due to too major life events experienced in such a short time.  I read somewhere that once it severe it stays that way but wanted to get some forum feedback as I know this condition is very different for everyone.

Just looking for a peck of hope that I can manage this with the least amount of meds once under control.

What cupcakespinkgal said. It's impossible to know what will happen in the future and just because a doctor or an article online said you can't get better, doesn't mean that is true. Have hope for the future and take good care of yourself. You never know what tomorrow will bring.

I believe severity can be reduced and reversed, based on my own recovery. I've read the descriptions of UC severity and was once at the very severe stage (fulminant I think it's called) although never hospitalized, just constant all day/night D, blood, weight loss, insomnia and anemia. It started out as proctitis which moved up to left-sided and eventually extremely bad symptoms.

Now am at very mild stage, only some days having more than 4 BM's but these are becoming fewer and fewer with no D now and blood rarely seen. It took almost 2 years of diet modification to get here and still working toward 100%.

If you learn how your colon gives you signs you can figure out to to get things back on track. For some people it's meds, for others it's diet or supplements. For me it's been 90% diet and 10% mesalamine enemas.

I don't have pancolitis, but my initial diagnosis had me quite sick and severe in symptoms.

Remember that UC heals "backwards", so from top to bottom. So what Sherry described is what needs to be tended to.

My flares are very mild, and I deal with them earlier and earlier even now. Rectal meds should be your very best friend, and if you can use the mesalamine enemas, please start using them now, nightly....

I get my next c-scope next wednesday, and if all is well, what I'm doing has paid off.

I think if you can do the mesalamine oral/rectal consistently and get to the point where you're treating flares earlier, you'll get the rhythm of using those meds.

It's not an all or nothing proposition...it's a commitment. I have the option to look back well over 22 years, and as I said...my diagnosis isn't pancolitis, which may factor into that success.

But...there are many with pancolitis who have had success with the oral/rectal 5ASA route....I think it's worth a try at the very least.

Of course, in saying all that, life always gets in the way...and sometimes it's difficult to get even a mild flare to behave even when using the meds. 
q

My mom was diagnosed with a very severe case of ulcerative colitis when she was 14. She was told that she would never have kids and that she probably wouldn't live a very long and fruitful life. Well, this strong woman has been in remission the majority of my lifetime (I'm in my early 30s) and has only recently shown signs of active colitis. She took lots of meds when she was younger but has not during my lifetime. Whenever I'm having a bad flareup, she is my inspiration. I keep telling myself that she got there once, so can I.

My second flare was very severe, and I was instructed to take meds for the rest of my life. I was able to get into remission using alternative treatments. I'm not taking any meds for my IBD, and I'm now considered to have a mild case.

I have mild to mod pancolitis. I've flared twice, the first time, getting misdiagnosed, the second time not knowing how to manage my disease. I credit not flaring again to management with enemas and suppositories. I have little blips that get tamped down easily.

I fantasize sometimes that I'm in control and will never flare again, but I think I'm deluding myself.

Anyway, I believe it's all about management of the illness, not the severity. My colon looked so great that my GI said I may have never had pancolitis, just rectal inflammation. He is wrong. The Asacol is doing its job.

The first year is rough with UC. Soon you'll be advising newbies.

I was diagnosised at with severe colitis at 12. It's amazing how they didnt pull out my colon. Now Im 21 and no medications, and still have my colon... I take a lot of supplements though, but this has allowed me to do high intensity training for my favourite thing in the world, breakdancing :)

Colitis has given me purpose in life, and has made me better then others cause I never neglect my health or waste my time with life. Master your own health! Use scientific method and find out what works for you and what doesn't. Good luck to you all.

Hey now Quincy. I think if someone is able to see this disease in such a positive light, more power to them. I do not think this is the proper forum to judge or disapprove of the way others decide to think.

Quincy,

I can see how some dont thank their disease. A lot of people like you suffer from it and let it ruin their life with negativity and hatred. I see youre on anti depressants, maybe you should look into changing your outlook on life and start healing from there. I'm not trying to be judgmental either... I knew a couple real life friends with IBD, and the one with the most negative outlook on everything in life was the sickest, mentally and physically, whereas my other friend believed in "a good world full of good people" was much better off. Research even states that mentally has an effect on the disease and vice versa.

I just redirected my life towards things I could do and having colitis gave me extra motives. I could have just turned out like my alcoholic sister if I didnt feed off of the positive energy that colitis gave me. Now I'm in university studying for the disease and working on a figuring out IBD.

I agree maybe better than others wasnt the right choice cause thats very broad to say... but it definitely made me a hell of alot stronger then others.

Hi All, I'm 23

I was diagnosed with Pan Ulcerative Colitis back in 2006 when I was 16, Since then I have had the same pain continuiously some days are alot worse than others.
I feel like a guinea pig with all the differnt medications I have been put on,
I started with Asacol, then mixed with prednisone steriods.
This seemed to control it for a while.
But then I got a flare up again, doubled over in pain, taken back up the hospital, I had then been given another type of drug call azathaprine, these caused me to have lumps come up called lymphoma, so I stoped these imedatily, luckly these have now disappeared before they turned cancerous. I had another flare up the other day 20/9/11 and my consultant told me to get straight down the hospital, I was put on a strong steroid sidation before going to have an x-ray and a colonoscopy,
My consultant come and sore me the next day, and checked me over, it had seemed that I was better due to the over night of steroids, and injections which thinned my blood, so he sent me home, with more prescriptions, I'm now currently on Asacol suppositries, prednisone steriods, mezalazine, and calcium tablets plus supplement nutritional drink.
My consultants said after my course of seroids he want me back on the azathaprine but I'm not happy about it and will ask if the operation to have my large intestine removed before I get 20yrs down the line and worse than what I am now with possible cancer risk, which I don't need!
A Question? does anybody taking Asacol suppositries have abdominal pains about 20mins after insertion, I am but these are ment to stay in about an hour, but i'm in so much pain I don't know whether to stop taking these any advice?
I have another consultant meeting in Dec but I dont know if I can wait that long I havepain always and nothing seems to work, how many different tablets are there before theres a right one?
What my next step its hard couping I've got 2 kids and they hate seeing me like this not being able to lift my 8month old or run about with my 5yr old I feel so useless have my wife run around for me and all I can do it nothing I do wish I could help

ColitisMastery said...
Quincy,

I can see how some dont thank their disease. A lot of people like you suffer from it and let it ruin their life with negativity and hatred. I see youre on anti depressants, maybe you should look into changing your outlook on life and start healing from there. I'm not trying to be judgmental either... I knew a couple real life friends with IBD, and the one with the most negative outlook on everything in life was the sickest, mentally and physically, whereas my other friend believed in "a good world full of good people" was much better off. Research even states that mentally has an effect on the disease and vice versa.

I just redirected my life towards things I could do and having colitis gave me extra motives. I could have just turned out like my alcoholic sister if I didnt feed off of the positive energy that colitis gave me. Now I'm in university studying for the disease and working on a figuring out IBD.

 

Your mode of attack is disappointing and surprising...it doesn't seem to be something  something that an actual positive person would say.  Retaliation on a personal level regarding other disease, physical or mental, is a low blow and basic disrespect.    Some things on this forum have an unwritten taboo, and this is definitely one of them.

q