Ulcerative Colitis rapid progression and sudden pain

[David1991]

About 2 years ago I noticed blood in my stool but pretty much ignored it until this last September. Since then the amount of blood/mucus has gotten a lot worse so I went to a gastroenterologist.

Blood work and stool samples came back fine but apparently I have ulcerative proctitis. The doctor said he couldn't get all the way through with the scope but that it was unlikely that I would have the proctitis (colitis just of the rectum), then not have anything further up, then have more towards the top.

He gave me canasa (meselamine) suppositories that didn't seem to do anything. Today I switched to 2 pills of asacol 3x/day which gives 4800mg per day as opposed to the 1-2000mg per day from the suppository, I guess because it goes through my whole system.

Anyway the reason I'm making this post is because since christmas night I've had intermittent pains in my stomach, about as frequently as I used to pass gas. Honestly before I would pass gas probably ~15+ times per day, now it's pretty much never I just get pains in my stomach and go sit on the toilet, usually with just a little coming out. There's not much I can do besides wait it on and honestly I don't even know what I'm going to do if it's still like this when I go back to school in 2 weeks.

Any suggestions? I'm going to another doctor next week but if anyone has advice or thoughts I'd love to hear them.


Thanks!

 

[Rossy]

Well I suppose its possible that the inflammation has extended further up the colon. You say stomach pains and the stomach is situated close to the ascending/transvers colon so the pain could be from that rather than your stomach.
Of course if procitis is not checked then it will travel up to become UC and more so that the suppositories were ineffective, so definitely worth getting some medical advice as you probably need to be on a steroid if things are getting worse.

Take care,

G

 

[ameslouise]

See if you can move your appt up sooner than next week.

If you are having pains, and not able to pass gas like you used to, there could be something going on further up. Your doc may want to do more tests and you'll need extra time to get it all sorted out before you go back to school.

Good luck! - Amy

 

[David1991]

Well I suppose its possible that the inflammation has extended further up the colon. You say stomach pains and the stomach is situated close to the ascending/transvers colon so the pain could be from that rather than your stomach.
Of course if procitis is not checked then it will travel up to become UC and more so that the suppositories were ineffective, so definitely worth getting some medical advice as you probably need to be on a steroid if things are getting worse.

Take care,

G

Man I'm really hoping I don't have to go on steroids. Is it likely that proctitis would spread like that?

And yea it's not really "stomach pain" it's, lower.

The night before my colonoscopy he said I could eat until 6pm, I finished my last meal at 6:30 but I guess that had to do with why he couldn't get a clear view further up. Thing is though the liquid mix they had me drink didn't seem to do that much anyway.

I have an appointment with my current doctor on the 7th and a new doctor at Princeton hospital on the 12th. I was planning on rescheduling the 7th one for the 14th and only go depending on what the guy on the 12th said. You guys think I should keep the one on the 7th?

 

[Rossy]

Is it likely that proctitis would spread like that?

Yeah thats its natural progression, most UC patients (procitis is UC of the rectum) would have probably started with procitis which travelled up to affect some or all of the colon.

I just mentioned steroids as you might need to go on them for a few weeks to "hit it hard" and make you feel better, but yep i understand the sentiment as steroids themselves have a health warning, but you need to get it checked by a professional and see what they think.

Take the first appointment available would be my advice so keep the 7th and the 12th and go from there, or as Amy says get seen sooner if you can.

cheers

 

[glum chump]

I don't know much about much, but I do know that sometimes I have an abundance of gas, and sometimes, I do what you do and sit on the toilet waiting for the pains in my lower abdomen to pass. The pain always feels like I need to pass gas, but nothing happens.

I now have to actually lay in bed on my right side in a fetal position and it is the only way I can actually pass gas and find some relief. Otherwise, the gas just stays in my belly, moving from being uncomfortable to bloody painful...

 

[David1991]

I've surprisingly only had 1 cramp since yesterday evening, maybe this Asacol stuff is really working....that probably means it's not just proctitis though since the suppositories didn't seem to help but these are :\

 

[Ian]

I was diagnosed with proctitis 5 years ago, but 4 years ago was hospitalized with my worst flare and my second sigmoidoscopy (followed by an MRI) revealed I actually have Crohn's. So yes it is possible that it has spread or that you have been mis-diagnosed based on how the disease initially presented itself as was the case with me (not the Doctor's fault by any means). Hopefully you'll find out more soon after your appointments.

I'm glad to hear the Ascaol seems to be working for you though, that's very positive I take the full dose daily but I have no idea if it does anything to help! It probably helps keep me in remission when I'm already IN remission, but it certainly does sweet FA when I'm flaring, so I'm impressed that you seem to be noticing some improvement on it.

As for steroids, they may be the next step unfortunately, but try not to worry. The side effects vary greatly from person to person so they might not 'cause you any significant problems, and if you hit the flare early you should only need them for a couple of months. I think the potentially scary side effects (osteoporosis, diabetes etc) only really occur in patients that stay on them for long periods of time with no breaks. If you take them you'll be prescribed calcium tablets to keep your bones in check.
They can be rough but they can also work wonders for your disease so it's usually worth it! I don't know if I'm lucky or if I'm in the majority here, but personally, other than hot flushes/sweating in the night sometimes, the only side effects I've really experienced are the unavoidable moonface, spots and weight-gain, so it's mainly just my vanity that's takes a hit These go away about a month after you stop taking them (I might start throwing parties for the departure and return of my jaw line haha).
I also get the raging appetite which can be another reason for weight gain, but you can probably fight that with a little will power (or say 'to hell with it' and eat like a pig for bit!)

 

[David1991]

I was diagnosed with proctitis 5 years ago, but 4 years ago was hospitalized with my worst flare and my second sigmoidoscopy (followed by an MRI) revealed I actually have Crohn's. So yes it is possible that it has spread or that you have been mis-diagnosed based on how the disease initially presented itself as was the case with me (not the Doctor's fault by any means). Hopefully you'll find out more soon after your appointments.

I'm glad to hear the Ascaol seems to be working for you though, that's very positive I take the full dose daily but I have no idea if it does anything to help! It probably helps keep me in remission when I'm already IN remission, but it certainly does sweet FA when I'm flaring, so I'm impressed that you seem to be noticing some improvement on it.

As for steroids, they may be the next step unfortunately, but try not to worry. The side effects vary greatly from person to person so they might not 'cause you any significant problems, and if you hit the flare early you should only need them for a couple of months. I think the potentially scary side effects (osteoporosis, diabetes etc) only really occur in patients that stay on them for long periods of time with no breaks. If you take them you'll be prescribed calcium tablets to keep your bones in check.
They can be rough but they can also work wonders for your disease so it's usually worth it! I don't know if I'm lucky or if I'm in the majority here, but personally, other than hot flushes/sweating in the night sometimes, the only side effects I've really experienced are the unavoidable moonface, spots and weight-gain, so it's mainly just my vanity that's takes a hit These go away about a month after you stop taking them (I might start throwing parties for the departure and return of my jaw line haha).
I also get the raging appetite which can be another reason for weight gain, but you can probably fight that with a little will power (or say 'to hell with it' and eat like a pig for bit!)

As vain as it may sound, the "moon face" and fat gain are some of the worst potential side effects for me because I'm really into fitness/bodybuilding/etc..

I feel like I often get the side effects of medicine (honestly I can almost guarantee this colitis is a side effect from accutane, which also really screwed up my joints). I guess we'll see how things go at the doctors next Wednesday.