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Just diagnosed with proctitis

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Ulcerative Colitis
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Posted 3/15/2011 5:54 PM (GMT 0)
Kitty,
I was just diagnosed with UP and my symptoms seem lesser than what I have been reading on this forum as well.... I did in fact do cortisone enemas for 2 weeks and then after 2 weeks of no drugs began to see some mucus mixed in with my normal stool and let my surgeon know at work that day and he prescribed me to be on 800mg asacol three times a day for 6 weeks and then he wants to do a flex sigmoid. to see how it is doing... he said that if the inflammation is pretty much disappeared then we would cut back my asacol dose and we would see how it goes. During my colonoscopy when I got the actual diagnosis my rectum had no ulcers at all and the only signs of irritation was simply probably from the bowel prep... he didnt even think it was UC until my biopsies came back a week later and showed it. My pictures were just very inflamed but did not look red at all. Thankfuly the rest of my colon was completely healthy. When I got on here and saw the immense lists of drugs everyone was taking I was paniced and overwhelmed at the same time... your story has given me hope. I am an RN and work 14 hour days and I just could not see me being able to be in the same career with all of these drugs! I am very thankful that I am only on 3 pills a day and just keep praying that things were caught early and its all going to be ok. I also do not seem to notice many foods that bother me... the only thing I can pinpoint is if I drink coffee in the am I am in the bathroom 5 times in that hour but if I wait till later in the day it doesnt bother me...??? I also LOVE LOVE wine... but I know it is not good so I try to just enjoy a small glass every few weeks... it has no signs of bothering me but I know you are supposed to avoid alcohol... My main symptoms right now in my mild flare are mainly achy knees and then the slight cramping in my left lower quadrant with a very minimal amt of mucus still in my stool ( this is only my 2nd day on the Asacol). Also, since my rectum is inflamed right now I have notice that the first part of my stool when I have a bm is hard and "hurts" and then the rest goes through fine. The only time I have ever noticed blood was never actually in my stool but when I wiped but I thing it was more from the stool scraping against my inflamed rectum and causing a minimal amount of trauma. Any comments/concerns Welcome! Very new to this! Still very overwhelmed also!
Posted 3/20/2011 5:03 AM (GMT 0)
 Hi KathleeRN;

       I am sorry this has taken me so long to respond.  I was out of town and just returned.  I hope since some time has passed that you are feeling better.  If you are looking for some help with this disease, I am just not a believer in Western medicine and I am sure you being an RN are; however, I can tell you that my symptoms have been pretty good for the most part since I started with a great Chinese herbalist.  A good one is extremely hard to find.  A suggestion also that I can give you is to check out a website called caramal holistic dot com.  I bought the book "Listen to your Gut by Jini Patel and I think she has wonderful ideas.  If I can answer any questions for you please ask any time.  I do hope you are well as I have had a very hard time dealing with my disease since I was 18 yrs old.

Take care,

Kittyboo

Posted 8/22/2011 3:40 PM (GMT 0)
Kittyboo, I am very interested to know about the teas you have been taking. I was diagnosed with Proctitis three years ago and take Asacol (Novo-5 ASA 400mgs 6 times a day the generic and half the price). It worked for a while but I now have severe bouts that last up to 6 months. I am more interested in natural remedies if possible. Would you be willing to let us know what your taking? I would love to try it out too. Thanks!

Has anyone heard of taking Chia seeds to relieve the passing have hard stools? I eat bran buds with my oatmeal everyday and it always kept my stools soft but when I bouts of Proctitis the stools become very hard and difficult to pass. I don't wish to try something that might cause more issues so I was hoping someone here might have tried these seeds. Apparently they turn to jelly when soaked for 15 minutes in any liquid. Thanks so much folks. This is a terrific forum.

Post Edited (Doobie) : 8/22/2011 9:47:40 AM (GMT-6)

Posted 8/22/2011 9:04 PM (GMT 0)
 Hi Doobie;

      It sounds as if you have bouts of trouble off and on.  Be thankful for that.  A Chinese herbalist was recommended to me and has helped me tremendously.  Unfortunately, I can't tell you what he gives me because it is a whole bunch of different Chinese herbs with Chinese names, but they have made my life so much better.  I do recommend, because I have seen two herbalists, one of which was highly recommended and didn't really know what to do with my case so I had to try another one and he has definitely been the answer. So it is a hit and miss thing.  If you can find someone in your area that preferably is Chinese and has done this for many years on a full-time basis, I suggest you try it.  You have to give them all your symptoms and they try different things to see what might work and what doesn't, until hopefully, they come up with something that really works for your symptoms.  The other thing that I will tell you is to buy Jini Patel's book on Listen to Your Gut.  She is not out to make money on you and even says, you don't have to buy from my website but try such and such.  She has great suggestions.  For one thing, a really good probiotic might help you.  I buy mine from LuckyVitamin.com.   Natren is the brand.  If you have anymore questions please don't hesitate to write.

Kittyboo

Posted 8/22/2011 10:09 PM (GMT 0)
Has anyone heard of taking Chia seeds to relieve the passing have hard stools? I eat bran buds with my oatmeal everyday and it always kept my stools soft but when I bouts of Proctitis the stools become very hard and difficult to pass

Chia seeds are an excellent source of omega-3s, probably even better than flaxseed which many use here along with fish oil. I haven't tried chia yet but it sounds interesting. It is also a good source of soluble fiber but I think psyllium might be better if you are just looking for soluble fiber.

Insoluble fiber such as bran buds can sometimes irritate the digestive system. Soluble fiber is much better if you have IBD.

I am sure you will receive good advice on rectal meds from veterans of this disease. For some reason doctors don't talk about them much but apparently they are very effective.
Posted 8/23/2011 1:08 PM (GMT 0)
Thank you both Kittyboo and Babinthewoods for your quick response and valuable advice. I have since contacted a friend who sees a Chinese hebalist/and acupunturist who has been practicing for over 30 years. I plan on seeing her soon and will happily keep you informed of any positive results. I will now stop eating the Bran buds for a while and will also check out Jini Patel's book and purchase a high quality probiotic. I tried some chia seeds, diluted and in gel form last night and ended up in extreme pain all night so I would not suggest them. egad!

Thanks again!..and thanks for this forum. Cheers Kate
Posted 8/23/2011 4:28 PM (GMT 0)
Doobie,

Chia seeds are great, BUT you have to drink lots of water with them as they have the capacity to take the water from your body otherwise, and then it will cause cramping.

Did you drink any water with the chia seeds?

Kittyboo makes a good point, probiotics are key.

Personally, I would recommend VSL #3.

There are many other natural treatments you could add as well:

1) slippery elm powder

2) LDN - low dose naltrexone

3) have you had your vit. d levels checked via blood work?


 

Posted 8/23/2011 5:44 PM (GMT 0)
InSoFla.. oh..duh.. no I did not drink lots of water. That makes good sense but I think I will steer clear of them until I am managing better. ;-) Thank you for the suggested Probiotic VSL#3. I will look for it. ...and also for the suggested natural treatments. Cheers.
Posted 6/25/2012 5:52 AM (GMT 0)
kittyboo, i think it might be very helpful if you give us the name of this Chinese herbalist, his full contact address so that we can also get in touch with him/her? I live in China, do not know how i can see one of these Chinese herbalists. Thanks and hope you can help in that
Posted 6/25/2012 11:11 AM (GMT 0)
LiaM - we're in the same boat - proctitis 10cm moderate since 2007. Since then various things have helped at times and then stopped working at others. People will swear blind that if you eat something, or don't eat something, swallow something, or stick something somewhere, or don't stick it there, or stick it there differently, there'll be some straightforward cause and effect response. UC just isn't like that, even if we all desperately wish it were. Medical knowledge advances, and every now and again you'll read something about a new discovery or treatment and get a bit excited that maybe you'll be able to get better, and then nothing. It's capricious, complicated and different for different people (to the extent that some speculate it's a family of diseases, not one) and if you're like me you'll be in a constant chess game with it - trying something which may progress for a while, then needing to try something else because that stops working, and on and on.

I'd be happy to go into details on the various things I've tried and what has happened while I've been trying them. But my advice would be to keep experimenting with things to see if something helps. Some of the things I've read people suggest on here have worked for a while, others have done nothing. And it's clear on here, some things work for some people and not for others. Also, some things work at some times and not at others - for whatever reason.

The good news is that what we have is a lot less bad than what many on here have to deal with. The bad news is that this form of UC can cause major problems with urgency, which is not fun. But despite having this over the last 5 years I've been okay - I've had two promotions since diagnosis in a big international organisation, run half marathons, am a hands on father of two small kids, and am generally okay apart from the UC - so it doesn't need to stop you doing things.

Lastly, I have been trying to manage without resorting to meds stronger than mesalamine and hydrocortisone. As a result I have never been in a full symptom-free remission since diagnosis, even if I've been keeping things at bay enough to function okay. I changed doctors and the new one was a bit surprised that my previous doctors had not dealt with things more aggressively. She takes the view that any inflammation is bad because it increases cancer risk, so you take whatever medication stops the inflammation and then work back from there. Your doctor may disagree. But as currently advised, putting up with it as I've been doing is not a good idea.

Good luck, and as I said, let me know if you want to discuss further and I can help.
Posted 6/4/2014 6:30 AM (GMT 0)
i know these posts are old, but i also know people still read them.
my proctitis seems to be gone. so i felt i should share what i know.

so...western doctors deal with things in a funny way sometimes. it's almost as most of them know nothing other than prescribing drugs. suppressive in nature.

the specific carbohydrate diet is very good in helping the body heal. cow's dairy, sugar, grains, etc. are hard for your body to digest. it's hard eating out, but i love vegetables
personally have been dealing with proctitis for about 7 months. I tried a steroid which helped for a week so i went to a naturopath. tried a bunch of herbs, probiotics, tinctures, etc etc. .
the last thing she prescribed finally worked. she told me she healed someone who had polio with this method. . . after two weeks of it, the bleeding stopped and hasnt been back. finally!
//
so it is something called biological medicine. instead of suppressing symptoms (western doctors/pharma), it aims to Identify disorders/ imbalances/weaknesses in the human regulatory system, get to the root of them, and heal/ balance/ harmonize them.
these products i used were homeopathic. it's called Pleo Sanum. im still on them. she told me to finish the process. not cheap, but... i dont exactly have a spare body. it was about $800 for everything.
...the regiment is similar to this but a bit diff (make sure you get a naturopath to help)
http://terra-medica.com/public_downloads/PleoSanum/Intestinal%20Kit%204%20Page%20Box%20Insert.pdf

i'm still off grains except for a little quinoa and amaranth. no cow's dairy or much sugar (definitely no beer or booze...). i just want to finish the process before i introduce anything like rice. im likely done with gluten, but who knows.
all i know is the toilet isnt stained red anymore. so thankful .
so... check it out if you've already tried the SCD for 2 months and havent seen change.
hope that helps somebody
Posted 7/13/2015 2:53 PM (GMT 0)
I was diagnosed last week but have been hoping for help for 8 yrs but still not sure if I really have Proctitis. I don't bleed but the inflamation in my rectum gets unbearable and more often than not affects my bladder to. I'm sure doctors think I'm exaggerating it. When badly inflamed I can't urinate properly to. I'm inflamed every day it never goes away and some days are worse than others. I am careful what I eat so I don't have anything acidy. I've had two colonoscopys but nothing was found and the only thing that proved I do have cronic inflamation was the fairly new to our doctors stool test. I can't get over to the hospital that it's 3 to 4 hrs after opening my bowels that the inflamation gets worse and worse so the stool test only showed some inflamation. I'm at the end of my tether with it and now have been given cortisone suppositories to use at night and some tablets to take at night to numb nerve endings.
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