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Just diagnosed with proctitis

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Posted 3/18/2008 7:44 PM (GMT 0)
Hello everyone,

well, after a very long wait, I finally had the flex sigmoid today and it's been diagnosed as proctitis. Apparantly 10cm's is inflamed. I asked if there are any ulcers and the consultant told me not yet, but it was bordering on starting. A couple of biopsies were done, one higher up the left side to show it's normal (thankfully) and one in the rectum. I've been put on Asacol 400mg x 6 a day and Pentasa 1mg suppositories x 1 a day. I go back in four weeks for a follow up. Just wondered if anyone else on here has the same thing and how long it took to get under control? Probably far to WIDE a question in generalisation terms. Anyway, if anyone has any advice to share, would love to here it!!

Thank you,

Rachel.
Posted 3/18/2008 9:30 PM (GMT 0)
Your doctor has you off to a good start by prescribing rectal meds. Like everything else with this DD, response to treatment varies. Some people will get noticibly better in a couple of weeks, some it takes longer. With the rectal Pentasa, it should speed thing up somewhat.

I hope you're feeling better very soon.
Posted 3/18/2008 11:10 PM (GMT 0)
My advice is to keep taking your meds as prescribed, get lots of sleep/rest and drink plenty of water. Hope you're feeling better soon.
Posted 3/18/2008 11:18 PM (GMT 0)
Proctitis is common with UC, rectal meds should help you, especially along the lines of cortifoam.

Feel better soon :)
Posted 3/19/2008 12:58 AM (GMT 0)
Thanks everyone..I'm just so relieved that it's finally diagnosed after far too long waiting, also relieved it isn't higher up too..

just wondered with the asacol if there's a particular time of day that you take them e.g. after food?? It doesn't specify in the instructions, so i'm assuming taking three after breakfast, then 3 after dinner in the evening will be okay?
Posted 3/19/2008 7:38 AM (GMT 0)
Hi..you can take the asacol twice daily...I've been doing it for over 19 years.

All UCers have rectum involvement...so all should be using rectal meds regardless of how high it is.

You being on both oral and rectal will help keep inflammation down..and you started early which is good. Were you bleeding before being diagnosed?

When you see your doc and you have improved...please, please remember that all rectal meds should be tapered....to every second night for a while then every third night..etc. You should remain on maintenance rectal meds.

Seems you have a good doc.

quincy
Posted 3/19/2008 8:23 AM (GMT 0)

Hi Rachel

I am new to this site too.  I have just been diagnoised with proctitis(14 cm) last week and I have started on pentasa suppositories and iron tablets. I have been bleeding since Nov 07 and I have had a colonoscopy last week and I am now waiting to see a gastroentroligist as an urgent referal. I have had urgency, wind and alot of bleeding but luckly no pain. I am from England where are you from.  Its really great to meet some one in the same boat.

Anita :-)

Posted 3/19/2008 10:49 AM (GMT 0)
Thank you Quincy, seeing as you are such a pro at this can I ask a question about these pentasa suppositories I tried putting the first one in last night and had such a tough time with it. I managed to get it in, but it was really painful and I couldn't get it very far up? I woke up at 6.30 this morning and it basically had not disolved at all, and I had to just pull it out.. :( I just spoke to the endoscopy unit and they told me to get some kyjelly to put on tip and it should help it along...my butt is so sore at the moment :( Was just wondering if the prefoam enemas are any easier to deal with? My symptoms are bleeding and mucous and I've had that for about 4 years (eek!)..misdiagnosed twice as piles.. the bleeding is very minimal at the moment though, more mucous than anything else. Last year the bleeding was really bad, it's just taken nearly a year since I went back to the doctors again and requested further investigating to actually finally being seen properly.

Hi Anita - I'm in the UK (deepest south london) too, so likewise, very pleased to virtually meets someone in the same boat! Are you having any trouble with the suppositories??

Thanks
Rachel x
Posted 3/19/2008 11:13 AM (GMT 0)
Hi Rachel, I also had a rough time getting mine in. But I found that the suppositories with Ky jelly went in better than the cortifoam. The cortifoam even with the ky jelly hurt me! I think with the ky jelly you will find it much easier. I did.
jan
Posted 3/19/2008 11:35 AM (GMT 0)
Thanks Jan, I will hobble to the nearest chemist at some point today, I am so sore at the moment!!
Posted 3/19/2008 5:49 PM (GMT 0)
One thing for sure, you can't compare the effectiveness of the suppositories to the cortifoam, cortifoam covers more area in the rectom and being a steroid drug, works much faster/effective than suppositories (from my experiance at least).

Good luck, hope you get your proctitis under control quickly.

:)
Posted 3/19/2008 11:08 PM (GMT 0)
Hi Rachel,here in the UK there's a great steroid enema called "Colifoam".It's helped me many times in the past and I'd thoroughly recommend you tryit,especially for Proctitis.

Hope you can get some relief soon,this disease certainly isn't a picnic!
Posted 3/19/2008 11:11 PM (GMT 0)
I should also add,that your GP can prescribe the Colifoam.You don't have to wait for your next consultants appt.
Posted 3/20/2008 12:25 AM (GMT 0)
Thanks for the tips! I decided since I am just feeling so sore tonight after yesterday that I will give it a miss and try again tomorrow. Now have the ky. I've just actually had D in quite a big way which took me by surprise! My partners mum cooked us dinner tonight, was a simple chicken casserole, but it had creme fraiche in it and I know that doesn't agree with me..v annoying. Tomorrow is another day though and i hope my butt is feeling much calmer in preparation for it's nightly visit !!

If I still find I'm having trouble with it after Easter, I'll definately go to my GP and get an alternative solution. Thanks for the advice .
Posted 3/20/2008 3:07 AM (GMT 0)
Q, I don't know if every UCer always has rectal involvement all of the time, both my mom and one of my friends with UC don't always have issues with proctitis even when they are having issues in their colon, so I don't think that's very accurate.

:) :) :) :) :) I added extra smiley's for ya!!
Posted 3/20/2008 8:17 AM (GMT 0)
It's how UC starts...at the rectum. It may be VERY rare that one doesn't have it, but it would probably show up eventually or that person may be misdiagnosed and is actually CD or other "colitis". 

I can honestly say that many/most UCers don't "get" the symptoms of only/early rectal inflammation because of previous obvious flare symptoms.

I know at this moment we're not on the same page...leaving more smilies for you. :-) :-) :-)

q

Posted 3/20/2008 11:19 AM (GMT 0)

Hi Rachel

It is tricky getting suppositories in all i can say is i wet mine with water (ky probably better) and when i insert it angle it towards your lower back, i also do it standing up rather than on my side as suggested. Hope you feel better soon.

Anita

Posted 3/20/2008 12:11 PM (GMT 0)
My doc prescribed Lidocaine jelly which numbs the area before I use my rectal meds - It helps a lot!

Posted 3/20/2008 6:45 PM (GMT 0)
Hi Anita,

Thanks for the tips! I left it alone last night and am feeling totally not sore today, so will try again tonight. Hope you feel better soon too! Have you found they are having an effect yet?

Hi Puglover13,

I've not heard of lidocaine jelly, but thanks for the tip!!
Posted 3/20/2008 8:14 PM (GMT 0)
love in a mist....since you're feeling OK today..use it during the day and another one at night.

I too have used supps and put it under warm water for a second..better than the jelly because it'll dispurse some of the med on the way in.

q
Posted 6/9/2008 6:35 AM (GMT 0)
Hi there~

I too have just been diagnosed with ulcerative proctitis, after a colonoscopy.; 10 cm~ currently moderate to severe.
I was hospitalised for 3 days while in the UK last Xmas with suspected ulcerative colitis (I had a sigmoid scope but was too inflamed for full investigation)- symptoms at that time where bloody diarrhoea, bloody mucous, weight loss, fever, slight anemia and given the following meds- 40mg prednisolone (tapering over 8 weeks), asacol 400mg (6@day), pentasa suppositories 1g daily. Within 8 days the bleeding has stopped.
After Xmas I moved back overseas to Asia, where unfortunately they do not have the same meds and within a few weeks my symptoms stared to com back gradually. I was prescribed oral pentasa (initially 2g, then 3g and now 4g daily) which I have read is more suited to crohn`s disease as it is released in the small and large colon, whereas oral asacol is released in he colon only, therefore making it more suitable for colitis and proctitis. As my condition was worsening (more bleeding/ cramping) I was prescribed prednisolone enemas (daily), which I found very difficult to retain due to the frequency or motions/ gas/ general inflammation. Then I was also prescribed pentasa enema. According to the attached link enemas are generally not effective to read proc*** as 90% bypasses the rectum. And now I`m back on oral pred (started at 40mg, now on 30mg)~ my bleeding has lessened, but the cramping remains, but the side effects are horrible- puffy chipmunk face, eye sight affected at 40mg, fluid retention on knees, weight gain (hungry most of the time).
So, I firmly believe that the `treat both ends` method of attack is vital for proctitis- specifically asacol and pentasa suppositories. Luckily I`m heading back to the UK for the Summer, so will be able to get both of these meds and will post my findings~ fingers crossed for remission.
I would also recommend avoiding insoluble fibre, too much dairy, gluten (affects the mucous), nuts, tomatoes, fruit and vegetable skin, seeds, nuts, alcohol, ice-cream, coffee; especially during a flare/ active symptoms. During a flare, I find that white rice and steamed root vegetables are easier to digest. I`d recommend getting hold of the following book- `The New Eating Right for a Bad Gut` James Scala / Ph. D.

Keep well
Posted 5/18/2010 4:04 AM (GMT 0)
 Hi everyone;

    I have somehow stumbled onto this website and in reading what everyone is doing for UP am shocked that nothing was ever prescribed by my M.D. except for Metamucil for the last 30 years and it didn't do a thing for me.  What are all these drugs used for, inflammation?  In the last five years of my life I started seeing an excellent Chinese herbalist and acupuncturist and for the first time in my life feel like a normal person.  I drink Chinese herbs three x's a day.  This disease causes me severe constipation and I think over the years I now have a prolapsed colon.  I was diagnosed at 18 years old.  My suggestion to anyone who finds this disease fairly debilitating to find a good Chinese herbalist.  

Posted 5/18/2010 1:06 PM (GMT 0)
hi kittyboo

Welcome and good job doing a "search" to find info helpful to you. Years ago when I first went to a specialist GI to find out what was wrong with me I didn't get 1/10th the info that I've gotten reading this forum.

My first diagnosis was proctitis but no enemas were ever prescribed until 6 years later (different doc) and now I know they could have helped enormously and maybe even stopped the progression of my disease.

When I first joined this forum many people pooh-poohed (pun) the idea that diet could improve UC symptoms. I got a lot of negativity. But since I know for me that diet has given me true remission and my life back I post here to help others.

If you have been cured by Chinese herbs that is great. Could you give specifics?
Other people have mentioned them too but it seems like a mystery to me. I took some when I had acupuncture but had no improvement of UC.

I am now 98% in remission due to diet alone and not looking to add herbs. But maybe someone out there reading is interested. When I was in flare Rowasa enemas helped a lot to reduce inflammation. Hard to use (and keep in) when things are REALLY bad but little by little they get the job done.

Best wishes.
Posted 5/18/2010 2:51 PM (GMT 0)
Thank you for your response. This disease has caused me a great deal of heartache over the years. In the various colonoscopies that I have had and sigmoidoscopies also over the years I have viewed my disease as being the last 3 or 4 inches of my colon. I don't know what that translates to in cm, but I can say it looks like chopped hamburger and once my stools reach that area things completely get backed up and don't seem to move along so to speak. That is my biggest issue.

I just recently got diagnosed with granulomatous roseaca and had to take antibiotics for one month which caused a HUGE upset i n my colon and almost ended up in ER for extraction. I am now on my second gastroenterologist because of a change in insurance and this new gastro has only suggested Miralax and nothing else. Maybe I have something different than most on the webpage; I don't know.

A friend of my suggested a Chinese herbalist 5 yrs ago to me so I said what the heck. He is located 50 minutes from my home and has helped me unbelievably!! with my problem. I got tired of driving that far and sought out one closer. She wasn't very good and didn't help very much. So needless to say I am back to traveling again and I wouldn't give it up ever!! What exactly the herbs consist of I couldn't tell you. They are Chinese names and my understanding is provide that area of my body lubrication so to speak and they most definitely work with zero side effects. Long story short, it's very hard to find a good one is my understanding.

As for diet, I think you are completely right, it is very important, but also something I don't think was ever stressed the importance of.
I have just recently cut out dairy, nuts, and have started to buy soy products. All I can say is maybe my disease reacts differently than most people in this forum. If I knew how to fix mine with diet alone, I would jump at it. I exercise 5 to 6 days and week, drink tons of water, try to eat decent and still have these issues if I am not on the herbs.
I was only hospitalized once with UP and that was when I was first diagnosed at the age of 18. It never spread and went beyond what it currently is. I am now 52 yrs old.
Thanks for your time.
Posted 5/18/2010 2:59 PM (GMT 0)
 By the way, imagardner too, I read your response again and it appears you have UC which my understanding behaves in a completely different manner.  I have never had any issues with fruit or fruit juices.  I definitely have to stay away from cheese.  I know UC causes diarrehea (spell) and I have never ever had that issue.

Thanks again,

Kittyboo

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