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Ulcerative Procitis dx in '08, symptoms worse now

Hi Everyone,

I was diagnosed in 2008 with Ulcerative Proctitis + possible IBS. A course of Salofalk helped me at the time, and I've had to use it again for a minor flare-up in 2009, but smooth sailing after that.

In this past year, I started to get more signs that things were getting bad again (including anemia in spite of taking iron supplements, occasional blood, etc.), but I didn't really pay much attention, because I was battling my evil bladder. I have been dealing with bladder conditions for more than a decade now -- Interstitial Cystitis that was severe at one point but is controlled now, AND, in the past couple years, chronic UTIs. Fun combination. So, I tended to ignore my bowel issues, since keeping my bladder happy demands my full attention. Looking back now, I really should have paid better attention to my gut sooner...

Christmas Eve, I suddenly went into the worst flare I've experienced yet, and it's slowly getting worse. Aside from worse left-sided pain than usual and all the typical symptoms (diarrhea, some blood, mucous, bloating, etc.), there are joint pains, eye issues, pain in the upper stomach area and occasionally on the right side, exhaustion, and terrible nausea. Frequency is up to 6-10 times per day on average (sometimes a bit more), when it's normally 1-3.

Almost all of this is new to me, and I'm a little freaked out by it all. Salofalk is just barely taking the edge off the symptoms, allowing me to sort of fake my way through most work days, but I am exhausted and in pain, and each time I think it's finally getting better, it seems to take a downturn the next day...grrr!

I've been to my GP a couple times, and will be seeing my GI on Feb 5. I'm keeping a list of symptoms so I can be as thorough as possible in that appointment. I'm not sure if all of this is normal for Ulcerative Proctitis, or if there's something else going on or what, but I am frustrated and feeling pretty lost as to how to approach all of this.

Which is why I'm here.

I see a lot of folks here who deal with so much, and you're inspirational. I look forward to learning from you!

-Masks
 
I am niot familier with your condition but I think you do need to see a GI. That is good place to find out what you have going on and your treatment options.

I don't think your symptoms are normal for a condion that is under control. Something is wrong and the sooner you find out what it is, the better.

I hope your appointment gives you more info so you can improve things.

Dan
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum.

I am also not familier with Ulcerative Proctitis so could not advise but I am pleased that you will soon be seeing your GI doc, keeping a list of symptoms is a very good idea so nothing is forgotten. It certainly does seem that your current med for this is perhaps not strong enough to keep things under control. Out of interest did you bladder troubles start before or after your tummy issues? Have you noticed any improvement in symptoms depending on what you eat? Another thing to perhaps ask you doc is if any bloods are done if they can also do a full check on your vitamin levels.

Please keep us updated on how you get on.

AB
xx
 

scottsma

Well-known member
Location
Tynemouth,
I agree with everything AngryBird said.I too have proctitis,dx in 2006.Apart from occassional flares,I am VERY lucky.I use Asacol suppositories for maintenance,just one in the evening or up to three daily when in a flare.I do have a problem with urgency,but am able to control it with Loperamide when I need too,and I've changed my diet gradually over the years.I know what I can't tolerate now and I'm usually careful although not fanatical.Please let us know how you get on,we're always interested.Best Wishes
 
I suffer from proctitis, mine is crohns. It started out with the blood, mucus and urgency. Then it started to hurt in the left side. I was diagnosed with ulcerative proctitis and ulcerative colitis about 13 years ago. About a year and a half ago I started having inflammation in my left eye. The eye doctor said it was do to IBD. About that same time I started having flares again. None of the usual meds worked, the Asacol and Canasa suppositories. So back in for a colonoscopy which just showed the same as always, but had to go on pred to help it. I tried Imuran and had to stop because it effected my liver. Well in August of 2012, back in for another colonoscopy. This time the biopsies showed crohns. So I stayed on the pred and started Humira. Now I have inflammatory arthritis. Taking methotrexate
for that. My point is I think you need to be checked for crohns, it causes all the things you mentioned. BTW, my crohns is mostly in the rectum which is the hardest to treat. I wish you luck at your appointment. To bad you can't get in sooner. Keep us up to date please.
 
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