Flares better or worse over time?

I'm in my first flare and I'd love to know the answer to this question. Someone told me yesterday that her first flare lasted for 2 years! But she was able to go to work and function in the world for most of that time. My case is more severe though. In my mind there's this cheeky, clever voice saying, "Well I'm going to beat this waaay sooner than that, because I know what I'm doing!" But really? I have no clue. I could do everything right and still be debilitated 6 months from now.

The thing that's been helping me the most is moral support from friends and family, and being reminded that this won't last forever. Eventually it will end, one way or another. The other thing is gradually, over time, having a bunch of safe foods that I can eat that don't taste half bad, because one of the most demoralizing factors in the beginning was eating next to nothing and in the most bland forms possible. Yuck.

I've also found that doing research and learning more about my body has been empowering, so that I don't feel so helpless and out of control. The more I learn, the more I can manage this. It has radically altered my life and put me in the "time out" box so to speak, but the more adverse the challenge the greater the learning opportunity, right?

Your fear... it's normal. Your body is going through something intense that modern medicine doesn't really know how to fix, only manage. I was scared out of my wits in the beginning because I relied on other people, like doctors, to tell me what was going on and what to do. I think one of the best things you can do is take action that empowers you with knowledge and awareness, to take back some level of control, and practice patience. It won't last forever but it's going to take some time.

My UC is all descending colon, left side, worse in the last 6 inches of bowel. I've been given prednisone by both IV and orally, 5-ASAs and remicade. Nothing worked. One of the reasons why I'm so weak right now is because in the hospital they put me on 60mg IV prednisone but didn't feed me enough calories, so I lost 40% of my body weight. I had to re-learn how to walk and everything because all my muscles disappeared from lying in bed for weeks.

I don't find commercial probiotics very helpful, and I've tried them all: VSL, mutaflor, prescript assist, etc. The problem with commercial probiotics is that they don't remain in your bowel, they just pass through or die. They are usually raised individually, dried, and then combined into a pill. In a natural fermentation environment, probiotic bacteria form a communal relationship with each other, which forms a colony that can survive. I use milk and water kefir, sauerkraut and kombucha, all home made, and I'm getting results. But that's just me.

Interesting to hear you were also stuck at home for months. July will mark month 4 since I've been mostly stuck inside, though I've improved enough that I can go out into the world for a couple hours each day, and I can even drive. As long as my bowels are cooperating.

Thanks for your encouragement :)

Poor memory! Yup! Sometimes I forget what I'm saying mid-sentence. It freaks me out.

Haven't tried a lot of enemas, but a kefir enema was suggested to me recently that I might be into. You're right, enemas could be important. It's hard to get oral things to make it all the way to the end.

Hi Chiron, welcome to HW sorry you have to be here though.

I was just wondering, in your signature it says "crohn's colitis" but in your response you said "UC" are you part of the approximately 2% that has both? or is your IBD indeterminate at this point still?

I have crohn's colitis (CD affecting my colon) and UC is a little different in that it only affects the colon/rectum where CD can affect any part of the GI tract from mouth to anus....Humira put my CD in remission (I had developed a recto-vaginal fistula so my GI finally was able to put me on Humira) I'm still dealing with IBS-C which my GI suspected I developed around 14ish years ago while flaring with my CD for 10 years straight already at that point.

I see you use Bee Propolis as well, I took it for over a decade and found it helpful when it cut my daily BM's down from 30 plus/day to 15 (sad I know to get excited about that lol) my GI even encouraged me to take it since it was 100% non-toxic and gave some aid, I no longer take it since I developed that nasty fistula I became even more constipated and was hardly eating due to pain (before I could finally get in to see my GI) and so I just dropped all that I was taking for supplements besides vitamin B12 which my family doc put me on due to lack of it in my system (common for CDers due to small intestine absorption).

Have you considered biologics at this point?

Hiya, I'm really sorry you're not feeling well! Try and keep positive if you can, I know its hard.
For me personally, my flares have been worse each time, but i think thats due to my GI not getting my medication quite right, so my body never properly healed in-between flares. It might be very different for you though, its hard to tell when everyone is so different.
As for keeping positive, all I can recommend is taking lots of time to pamper yourself (and get other people to pamper you too!), just take care of yourself/take advantage of this support system online. I really hope you feel better soon xx

Oh that's awful Chiron, sorry to hear that you've been through so much and still not a proper DX though based on your description it definitely poinst to CD IMO, just the fact that it's patchy inflammation and affecting your esophagus is no wonder why crohn's would have been suggested by the original GI....the fact that your colon is in such bad shape seems strange that another GI would just label you as having UC, UC unlike CD stays on the surface of the lining, CD can go through the many layers, I wish GI's would get their own crap together and DX their patients properly, I know it can be tough in many instances but just reading what you've describes screams CD at me (or as I mentioned, the unfortunate that have both CD and UC).

There are 5 subtypes of CD crohn's colitis being a somewhat common one where CD affects the colon but not necessarily the rectum (in my case it has stayed constant in the colon for 23 years before Humira last year and on and off in the rectum--I have rectal scaring as a result of when it affected my rectum it was quite severe over many years) CD can also affect more than one part of the GI at the same time (as in my case, and when I first became sick with crohn's it was also affecting my small intestines.

Ileocolitis, Ileitis, Gastroduodenal Crohn's disease and Jejunoileitis being the other 4 of the 5 subtypes.

I don't blame you for being weary of meds, I was too because in the beginning when I became sick they tried all the meds they had back then in 1991 and I was either allergic or non-responsive to them with the exception of prednisone at first but after about 5 times of being on it (spread very far apart each time over the first 6 years of becoming sick) it also lost all it's effectiveness mind you it only helped some the first couple of weeks and after that when I was told to start tapering it, it no longer helped, by the 5th time it didn't do a single good thing for me...it was a love-hate relationship for me with pred anyway.

From what I've read on this board, Humira tends to work much better for CD compared to UC, why, I have no idea then again IBD in itself is mind boggling.

I'm glad you're gut is being helped with the Bee propolis, when I first found out about it I was raving all over the forum about it to the point where I'm sure many thought I was actually selling it or something lol.

Well CD can be a lot more tricky than UC because it can affect any part of the GI tract (and as I mentioned more than one area at a time)...CD doesn't necessarily always affect the layers of the lining, like UC it too can stay on the surface but definitely the patchy inflammation is indicative to CD and not UC in any way.

The same meds used to treat UC in the colon and rectum are also used to treat CD affecting the colon and rectum...do you or have you used rectal meds for your proctitis?

pb4 said...
The same meds used to treat UC in the colon and rectum are also used to treat CD affecting the colon and rectum...do you or have you used rectal meds for your proctitis?

Just 5-ASA. Both my MD and GI won't offer me anything else but surgery at this point, which is why I've abandoned their care. I'm doing much better now without them anyway.

NiceCupOfTea said...
Wait, you're diagnosing yourself with small bowel disease on the basis of a feeling? That's nuts if you have. If I've misinterpreted your comment then I apologise for getting it wrong.

That's pretty rude. It's a feeling + the preliminary medical evidence I was given early on. There's inflammation in my SI for sure, I can feel it. Inflammation is inflammation, regardless of what the disease name ends up being. I find it hard to believe that anyone could be oblivious to those sensations, and need a doctor to spoonfeed them such info. I might not know the exact nature of the inflammation empirically, but I know it's there.

NiceCupOfTea said...
But until you get similar corroboration of small bowel disease, I shall take its existence with a massive, massive pinch of salt.

Ok, you do that. *shrug*

Hi nice cup of tea, sorry your flares got worse. Were you given different meds for each flare in the circumstances?

Jessa33 said...
Hi nice cup of tea, sorry your flares got worse. Were you given different meds for each flare in the circumstances?

Oops, meant to reply to this earlier but got distracted.

In a nutshell, yes, although it sometimes forever for the doctors to move up to the next tier. For example, for the first five years I was given nothing but oral mesalazine. I couldn't tolerate it, so I basically didn't take it. My then doctors at the time didn't seem remotely interested in this, and just gave me another brand of mesalazine to try.

During those 5 years my symptoms were quite mild and I still felt well in myself (physically at least), so I wasn't actually very worried about it. Knowing what I know now, in restrospect I would have started demanding 6MP or azathioprine a year after diagnosis: I would not have wasted 4-5 years pissing about on mesalazine (or, rather, not pissing about on it) when a) it's proven to be almost entirely useless in Crohn's disease and b) my disease was silently getting worse during those 5 years.

In 2005 I became ill. My symptoms mostly took the form of gruelling fevers and watery diarrhoea. I've got no memory and I didn't write anything down at the time, so I can't remember when I was first prescribed aza: whether it was before I fell ill or afterwards... Sometime in 2005 or 6, I was also prescribed my first course of steroids. That was after I fell ill because I clearly remember how much better I felt and how much energy I had.

I never really recovered from that first relapse, and between 2005-11 I tried aza and 6MP (not together obviously) a few times, as well as going on a course of Pred about once a year. The Pred worked, but only briefly: the symptoms would start returning long before I was even off it. The aza/6MP never worked: at one point it seemed like the 6MP was kicking in, but then I regressed again...

My previous hospital talked about Remicade, but kept on messing me around. It had a dreadful IBD department and I left in disgust in 2010. Joined my current hospital in 2011. Much, much, much better GI. He got me onto Remicade, but it was too late. Didn't work, ended up in hospital with my most severe, life-threatening flare-up yet. Tried methotrexate and Humira, they didn't work either. Became steroid-dependent. Had surgery in Feb 2013.

I've gone full circle to being on no meds again <_<. It's a deliberate decision. Basically, mesalazines are useless for Crohn's and I didn't want to be on an immunesuppressant if I was in remission. As soon as there is evidence of disease, I'll go on aza/6MP but so far there actually hasn't been any sign of the Crohn's returning.

I bet you wish you'd never asked now! :p

My flares have never been as bad as the initial or during the first 2 years. Once I figured out how to use the rectal meds at earlier symptoms, my flares have not been as severe.

q