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Proctitis Sufferers - What works for you???

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Posted 1/4/2009 7:07 AM (GMT 0)
I would love to hear from fellow proctitis sufferers what works best for you....

1). what are your symptoms?

2). what meds are you on?

3). do you alter your diet?

4). any supplements?

5). has anybody been in a flare for a LONG TIME and has been told they might have to go on 6MP since nothing else is working?

 

 

 

Thank you all so much for these past few days.

Best,

Wishful
Posted 1/4/2009 5:14 PM (GMT 0)
Hi WishfulMa,

As a proctitis sufferer myself, here are a few of my answers...

1) Diagnosed around 2004 after having bleeding. Noticed lots of blood in my stools, which were not watery but were also full of mucus. Sometimes, I have urgency to go to the toilet, and then feel I have to 'push' really hard...but nothing comes out other than more mucus and blood!
Also get other symptoms, like extreme bloating, constipation, sore anal area (including dull, throbbing pains), and lots of tiredness. Also have sore eyes sometimes to the point where the outer layer of my eye-ball starts to come away! ( this is another 'blessing' from the UC, I've been told).

2) Meds- currently on Ascacol ( around 6-8 tablets a day) and Pentassa suppositories. Also trying probiotics and cutting out too much milk/dairy products...believe I might also need to cut out wheat, as I'm always feeling bloated and yucky.....but I enjoy food so much! ( I don't smoke or drink, so food is my little pleasure in life, its so cruel that I now have to think about what I'm eating!).

3) Diet- as said above, I think that (despite what doctors have said), food does seem to have some part to play. I am flaring now, and feel really bloated and gassy. I try to eat well...lots of veggies, green tea, not much red meat, not too much alcohol....but I do have a sweet tooth and am also trying to watch that. I have switched to Soy Milk rather than cows milk too...clutching at straws more than anything!

4) Suppliments- Extra Strengh FloraSmart Probiotic tablet, once a day. Only been doing this for a week or so, so can't really tell if its making any difference....Also trying to take a vitamin supplement everyday too....oh, and I drink green tea in the evenings to try and soothe my bloated belly!

5) I am currently in my worst flare since being diagnosed (hence all the above experiements!). I started flaring around August/September. Have booked an appointment with a GI, I think I might need another colonoscopy to see if the disease has spread beyond my rectal area...haven't had an internal exam since diganosed 5 years ago......I believe that my current meds are not working, and am hoping that the doctors will try more rectal medications for me......hate the suppositories though....

There, hope that helps! wink
Posted 1/4/2009 6:51 PM (GMT 0)

I have proctitis but it has gotten worse recently. When it was just proctitis, diagnosed by sigmoidoscopy/biopsy, I was able to treat it well with Canasa. Now that it has gotten worse, my symptoms have gotten much worse and I am on Asacol (9 a day). I actually decided to use the Canasa last night with the Asacol and I think it helped. No blood today but I still had D this morning. The mornings are always the worst for me. Three bathroom trips back to back, all crampy...

When I was just dealing with proctitis, my symptoms were more minor. I didn't have regular D, just blood on the toilet paper or the stool, occasional loose stool, not too big of a deal. Since it has gotten worse I literally have to run to the toilet and I deal with severe D, fatigue, low iron, blood in the bowl, mucus, cramps...

I have tried a lot of supplements and I have tried taking none. Either way I have been dealing with the same terrible flare for as long as I can remember. I decided to go back on the vitamins and supplements about a week ago and no change in condition so far.

I have been in this flare for a LONG time. Believe me, I know how you feel. I wish anything would help me but I am trying to be patient and work through this with relaxation and diet so I don't exhaust all my options and end up going under the knife. That is one of my biggest fears, I don't want to have surgery even though I have seen so many incredible stories of success. I wish I could offer you more advice but nothing is helping me either so it seems we are in the same boat.

Keep in touch. I hope you find something that puts you into a longterm remission.

Posted 1/4/2009 11:39 PM (GMT 0)
     Proctitis here too.  I see you are all on Asacol.  My GI doctor switched me to Colazal.  Maybe worth mentioning to your GI doctors.
Posted 1/5/2009 12:48 AM (GMT 0)
I was diagnosed with pancolitis, but the flare symptoms only seem to pestering my rectum right now.

1). what are your symptoms?
lots of urgency to go, but probably only really poop 4 out of 10 times (The rest is a lot of pushing, with nothing to show for it.) Sometimes there is light pink on the tp.

2). what meds are you on?
3 asacol 3 times per day, cortifoam at night (just started again) and canasa in the am when I can get it to stay in there.

3). do you alter your diet?
I'm putting myself back on the BRAT diet to see if that helps. I steer clear of too much fiber as that makes things worse for me.

4). any supplements?
Not at this time.

5). has anybody been in a flare for a LONG TIME and has been told they might have to go on 6MP since nothing else is working?
I have tried Colazal (bad allergic reaction) and Lialda (which caused immense amounts of gas!!).
Posted 1/5/2009 5:44 PM (GMT 0)
I am just waiting on biopsy results to tell me if I have proctitis. I often get lots of mucus in my stools and a tenesmus feeling. My stools range from thin and loose to constipated. Sometimes I just pass mucus on it's own.
The doc said that if it's not Proctitis, I have IBS. I didn't think that you could pass mucus with IBS.
He said that if the biopsies show inflammation, I'll be started on Prednisilone suppositories.
Posted 1/8/2009 1:51 PM (GMT 0)
Bumping the thread....
Posted 1/8/2009 6:39 PM (GMT 0)
Vitamin E enema is the king of all treatments for proctitis
Posted 9/30/2015 1:41 PM (GMT 0)
I was diagnosed with Proctitis this July after a colonoscopy.

My symptoms were streaks of blood on stools, mucus on stools, sometimes campy, very occasionally had diarrhea but that was mostly before my colonoscopy when I was stressing out about all this. My doctor told me my biopsy came back negative for colitis and the results showed Proctitis, when I asked if I had ulcerative he said maybe. I did test negative for any STDs so most likely it is ulcerative proctitis, which is a bummer but being positive it could be a whole lot worse. I just hope it doesn't spread.

My doctor prescribed me Canasa which is really expensive but does the trick. I use one suppository at night. I only use them when I see blood on my stool. I am also amazed how how much drugs some people are on here which makes me think I am under prescribed or I have mild Proctitis. I sometimes get these short spurts of rectal pain usually when I have a flare.

Trying to clear up but it seems the longest I can go is 1-3 weeks at most without seeing any blood. But some of that has to do with my diet I believe. At the end of August I went on vacation and binged drank, ate terrible food for me, and drank way too much coffee. I find diet wise I can handle dairy and wheat but to keep it to a minimum because it tends to make me gassy and bloated. Sadly spicy food, alcohol, coffee/energy drinks does really trigger something and can bring on cramps, loose stools, and mucus/blood.

Right now I take a vitamin D pill and Trader Joes Acidophilus and Probiotic Complex.
Posted 9/30/2015 1:59 PM (GMT 0)
I was diagnosed with proctitis, ulcerative colitis. When I go to the restroom, there is blood in the stool.

I tried several medications, what works for me is Mesalamine Rectal Suspension USP. It takes about one and a half month treatments to stop seeing blood in the stool.

Post Edited (mkc4091) : 9/30/2015 8:02:07 AM (GMT-6)

Posted 9/30/2015 4:09 PM (GMT 0)
Since ulcerative proctitus is a chronic condition the best treatment plan is a continuous treatment plan, even when you are in remission and not seeing any blood. There is no cure for the disease so it will ALWAYS come back if you treat it short term. Since it often gets worse with every flare and can indeed spread, that is why you need continuous treatment, even when you're feeling well. You should never completely stop treatment when you're doing better, although you can often cut back. The best treatment strategy is to make sure you never flare again and not use the strategy of stopping treatments and then when you get worse, continue treatments again. You may very well reach a point where what worked before won't work again or work as well, causing you to go up the med ladder. You really don't want to do this so you need to keep it fought back so you never flare again by taking meds even when you're doing well.
Posted 9/30/2015 4:44 PM (GMT 0)
I'm still taking Culturelle probiotic each day in the morning, eat one cup (4 oz) of Danon Activa yogurt after dinner, and take Metamucil every day.

Post Edited (mkc4091) : 9/30/2015 10:47:14 AM (GMT-6)

Posted 10/14/2015 2:47 PM (GMT 0)
Diagnosed in June 2014 with mild Proctitis after having months of bleeding and mucus, another colonoscopy in Jan 2015 revealed severe Proctitis.

It has never gone away, although the symptoms go up and down.
At the moment I'm having a lot of urgency where I have to run to the loo where I'll have a single 'blow out' lol, then I'll sit there with me rectum insisting that there is more to come and fooling me to automatically push, sometimes I'll pop out a solid stool, but mostly it's just blood. This is now happening about 4-5 times a day.

I sometimes have the dull throbbing pain up my bum... literally a pain in the arse lol! And pain in my left side and sometimes cramps over my whole abdomen, but I was told during my last scope that my colon spasmed through the whole examine which indicates I have IBS too... personally I think that was just my colon being pissed off with the starvation and then unwelcomed prodding lol.

I haven't changed my diet, because as soon as I think I've sussed out what food is causing me trouble, things change!

I am constantly on Pentasa suppositories and take them as I feel they are needed most, at the moment, I'm taking one or two a day and when I get things under control, I'll lessen it out to two or three a week again.

Post Edited (Gency) : 10/14/2015 4:01:34 PM (GMT-6)

Posted 10/14/2015 3:20 PM (GMT 0)
It doesn't sound like your proctitis is very well controlled, stronger medications may be needed. Is it ulcerative proctitis, or crohnic proctitis?

We all understand urgency and the ups and downs of this disease. They're horrible, for sure, and we do the best we can to manage them.
Posted 10/14/2015 9:54 PM (GMT 0)
I don't have a GI, I was lucky to once get to talk to the doctor in the hospital who did both my colonoscopies, he's a colorectal surgeon, so unless he's getting to use his knife he's not really interested in chatting to his patients. He's a bit of a nob to be honest, I could see I was boring him why my 'stupid' questions. He told me that the histology report showed non-specific Proctitis, that there had been no sings of infection, that it was one of those things that they don't know why I got it but it would never go away but the medication it could be managed. He referred me back to my GP, telling me if I got worse to have her send me back to him. And that was that, my GP explained to me that it was the mildest form of Ulcerative Colitis.
It did bother me at first how flippant the surgeon was, and my own GP wanted to refer me to a GI in a capital hospital, but after reading more here and other places about what IBD sufferers go though, I realised how lucky I am that it's not worse and I'm 'sorta' managing it lol. If the day comes when I do feel I'm loosing control on it, I'll get that other referral. :-)
Posted 10/16/2015 1:29 AM (GMT 0)
I want to give some advice that may help those with proctitis. It may sound stupid but you need to ignore your urges to go to the bathroom if you are finding you sit down on the toilet and nothing happens.

Trying my best to stay on a normal BM schedule helped me immensely. I would just sit down 2 or 3 times in the morning and push gently. If nothing came out right away I would not push anymore and just get up. I learned to just ignore the feeling like I had to go in the afternoon and evening...it was just my inflamed butt trying to trick me. Trying to force something out only made things way worse.
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