UC - flare up's a myth?

Hi there,

32 year old male. I am new to this forum (new to any forum for that matter).

Diagnosed 5 years ago with UC. By many of the guidelines on a lot of websites, I have severe syptoms but I guess its all relative (average 7 BM's per day, can't remember the last time it was <5, but sometimes >10).

I have tried Balsalazide and Azathiorprine without any luck. Been on and off Prednisolone for the majority of the 5 years with the exception of 6 months at the start of this year after my first Remicade infusion which worked a treat. Second infusion this summer didn't have much effect. Very disappointing.

My question is, I read about people having flare-up's. My own experience is that I don't have these - I'm either ill all of the time (i.e. regular BM's, tiredness, discomfort etc), or on a particularly good or strong dose of medication. Does anyone else feel like this - i.e. the only time you're not on a "flare-up" is when heavily medicated??! In which case is do they really exist?

Every now and then I go through a couple of days when I'm really bad - i.e. very very cold, uncontrollable shivering, fever  - pretty much bed ridden - can sleep for a couple of days straignt. I always figured this was me just picking up a bad cold or something and the syptoms being magnified by my condition. Or is this a flare-up?!

I've got a load more questions, but let's start with this. It would also be helpful to know if many people have a similar level of constant syptoms and just get on with it, i.e. acknowledge that that's the hand they've been dealt  and make the best of it. My wife is encouraging me to consider surgery - can't say I'm ready for that.

Any help gratefully received

In many cases the question should read: Remission a myth?? What you are experiencing is a flare up and not a controlled one. Have you ever tried rectal meds? Do you know the extent of your Uc?

I agree with Sherry on this one; that it sounds like you have been in a flare ever since you were diagnosed, and haven't gotten into remission. I personally wouldn't put up with the symptosm you're describing. I'd have a serious discussion with your doctor regarding your symptoms, what other medications you can try, explore diet modification, and begin to explore surgery. I know everyone's tolerance for symptoms is different, but I'd much rather have surgery than live with the symptoms you're describing. Most UC patients who have had surgery say their only regret is not doing it sooner.

As for remission being real, I'm in a really solid, totally symptom free remission, and have been for a little over a year and a half now. My flare was very severe (15-20 BM's a day at the peak), and I gained remission by using oral and rectal mesalamine, plus a relatively short course of prednisone. I successfully weaned off of pred, and have maintained remission using oral mesalamine daily, plus a mesalamine enema twice a week.

Also remember that this forum, in general, is made up of UC patients who are having trouble managing symptoms.

For almost 10 years I had constant symptoms, no relief, so I'd agree with Red about "Is remission a myth?".
RX meds never did much for my symptoms. It has taken throwing everything at my UC: total diet control (modified SCD), meds, probiotics, Curcumin/Turmeric, to achieve near-remission. I am not ready to call it total remission yet.

I had the shivering, inability to get warm, even on 90 degree days, years ago. Yes I believe it was colon-related.

And yes I handled symptoms with "just deal with it". What other choice did I have. Until I came to this forum no GI ever mentioned surgery. It's good to know it's there if all else fails but for now, for me, it's not in my plans.
If I were your age and needing to hold a full-time job it would be strongly considered.
It's not your wife's decision to make, it's yours. But nice to know she would support that choice.

Best wishes.

what does your gi say about all of this?

Have you had any blood work?

Remission is possible.  Feeling better is possible.  Seems like you are getting used to feeling sick.  Dont.  If something is not working for you meds wise, change meds.  if your dr is not helping, find a new dr. 

If it was me, and I felt that lousy for 5 years straight, first I would make sure I have tried everything possible.  There are alot of amazing people on here who have been through it and have alot of good experience.  I am truly humbled by all of them. 

and then If nothing worked I would look into surgery.

i hope you feel better soon

I would just stop the meds for a week and see what happens, then go from there, just to eliminate whether they are helping or hurting.

Try taking psyllium powder, it may help slow things down.

Thank you all for the posts - very helpful.

I probably didn't give all the details of what I have and haven't tried - but its clear from coming on this forum there's a lot I could yet try.
Diet - tried eliminating wheat, dairy, tea/coffee, alcohol - apart from alcohol, I didn't really notice much difference - but I also felt like I was becoming a hermit if I didn't go out occasionally (and yes, I know its possible to socialise without having a drink!)
Tried Aloe Vera, fish oil, various vitamin supplements - again no difference noted.
Exercise - actually I think this does help. The problem is getting the energy to actually go for a run/swim in the first place!
I tried coming off the meds altogether. Not good.

Interesting Ugh just Ugh's comment about the difference between Remicade treatment stateside. Here in the UK I had to really battle with my insurance company for my first treatment and they then refused to pay for any more treatments saying it was an "experimental cancer treatment". Second treatment was on the National Health Service, which is notoriously slow to give appointments - so its very difficult for me to get regular access to this medication.

I am, rightly or wrongly (and partly backed up by my experiences so far), skeptical as to how tweaking my diet could solve such a chronic illness - but I'll definitely be trying some of your suggestions.

As for surgery, my doctor has pushed me away from this for the time being.

Diet effects my UC, I believe it starts with IBS and then if I do not get it under control it becomes IBD. Most months out of the year I am not flaring.

I was in a severe flare - 15-25 times a day and bleeding every day - for five years after diagnosis. Fortunately for me, Remicade has worked well for me and I've been in remission now for nearly five years.

If medications aren't working, I think a surgical evaluation is definitely in order. I'm living proof that long-term steroid therapy can produce some really life-changing problems.

I know how you feel. I was diagnosed when I was 10 years old and I am now 18. I have been on medication constantly since then, salofalk, azathioprine and prednisone--yes, prednisone for 8 years. I know this seems unheard of, and believe me, my nurse practitioner wants me off of it but not until this school year is over. Any time I have been off of prednisone I relapse nearly right away. I've never been off of it for more than 3 weeks. Fortunately it is a very low dose (only 5 mg) and it keeps me stable without any noticeable side effects other than weakened bone density which I have been able to improve over the last few years.