Proctitis
Kathy H

Columbus, OH

#184 Apr 10, 2012
Good morning Kim, I suffer from ulcerative proctitis also and would love to have you email your shopping, food, ect list! My email is [email protected] Thank you and have a great day!
Kim wrote:
Mike-Do NOT have the surgery! I was in your shoes for 7 years and now i am 100 percent cured. I literally had the appt with the surgeon scheduled and I had to cancel because of no baby sitter-what a blessing in disguise! I ended up meeting with a local nutritionist who took me off of gluten dairy and sugar. It was super difficult for awhile  but when you feel SO good it motivates you to stick with the diet. Once most of my symptoms were gone I allowed myself limited sugar. 
I felt great on that gluten free dairy free diet for a year... Then I starred eating gluten again(thinking my real problem was dairy) ever so slowly the symptoms came back - even worse than before-I couldn't eat anything without running to the bathroom with terrible cramps, nausea and tons of blood. It was out of control. So I went back to nutritionist - this time she said it's "INFLAMMATION" caused by the gluten. So she put me on INflammaCORE (by Ortho Molecular Products). It's a product that you drink sort of like a protein shake except it contains a high concentration of  healing ingredients like Turmeric, L Glutamine, skullcap...  This was on a Thursday...she said " take 2 scoops a day and call me on Monday...if its not getting  better  by then, you need to see the surgeon". I was totally freaked out. If the nutritionist tells you to go see the surgeon you know it's serious. So, I did exactly as she told me...I took that product as directed along with gluten/dairy free diet and no sugar....I called her on day 5 and I was completely amazed...this stuff is really working!!!! I'd say I was 75% better on day 5 so I continued with the 2 scoops for 3 weeks I think...then I did 1 scoop a day for a couple weeks then one scoop every other day. That stuff and the diet completely cured me. So I have been on the gluten free dairy free diet for 2 years and I can't tell you how fantastic I feel. I want to go in my doctors office with a megaphone and a huge bag of unused medicine and tell him how angry I am with him!!  I took all those crazy meds and enemas and suppositories for 6 years!!!!!! They temporarily and barely treated the symptoms....the diet treated the cause.. He HAS to know that a digestive disease MUST have something to do with food. 
I guess it's sort of my fault too. If you go to a doctor you should know...he's going to either try to prescribe it away or  cut it away!!!! They only get 60 minutes of schooling on nutrition. Ok, sorry for venting a little right there.
So, my suggestion is to go to a good  nutritionist or take yourself off of every bit of gluten and dairy AND sugar until you start feeling  better then you can add some sugar back in. This is because sugar goes directly to the sight of inflammation. Also, incorporate that INflammaCORE as well. I hate even telling you about this product because I don't want you to think I work for the company or something-I don't. I was always skeptical reading stuff on the Internet that mentioned products for sale. Anyhow, after I got it from my nutritionist , I went online and watched the Webinar on the Ortho website-it was  very helpful and educational.
I promise you u will feel better in a matter of days or weeks and be cured within a month or two on the strict diet. 
I will write up a summary of what I shopped for, cooked, ate, drank, etc. and email it to anyone who is interested in trying this. I have wanted to do this for a long time. 
Good Luck and feel free to email me if you have any questions 
Kim
Jtarbunas

Grand Rapids, MI

#185 Apr 12, 2012
I would also like you to email me your shopping list, food and ect list. Thank you so much! My email is [email protected]
Kathy H wrote:
Good morning Kim, I suffer from ulcerative proctitis also and would love to have you email your shopping, food, ect list! My email is [email protected] Thank you and have a great day!
<quoted text>
Gavin Fenton

Farnborough, UK

#186 May 31, 2012
Hi Kim, I am recently diagnosed with proctitus and am struggling. Could you email me too? [email protected] many thanks
mrlreddy

Duluth, GA

#187 Jun 1, 2012
Hare Krishna wrote:
For those with mild flare ups try using coconut oil. Keep a small amount of the oil in the refrigerator so that it solidifies and you can take a small blob and insert it in. Three times a day is ideal. Its like greasing a body part to avoid friction. I believe chronic conditions cannot be cured by western medicine.
Also I was given Graphitis 6c by my homeopath. Graphitis cures skin eruptions on any part of the body. Three granules thrice a day can be taken.Please read homeopathic medicines. Just google it.Makes sense to take this since proctitis is a skin eruptions.
Aloe Vera does seem to act as a stool softer. Please for God's sake avoid medicinal laxatives they loosen the muscles in the rectum and make things worse. Natural foods are the way to go. Try pro-biotic yoghurt from Indian Stores. I eat a bowl yoghurt with banana every night. This combination does help my stomach
Good luck to all of you
I thought diary products really a no no to UC patients. looks like you are able to manage, which is good
CJBee

Northampton, UK

#188 Jun 12, 2012
Hi
Just had a colonoscopy- have proctitis, was diagnosed in 2004, I took sulphazalasine for years (orange wee!!) but didn't realise after years feeling it had gone, no longer had symptoms (almost forgetting the horror of travelling with the symptoms in full flare up)I took the decision with GP to stop taking them. She advised keeping some by just in case, obviously I didn't take on board stress and likelihood of further flare ups! Got constipated, mucus and blood, so saw another gp in practice she gave me microgol to make me go- it worked, but the mucus prevailed - sorry long story.
Did you get hold of the inserters for the suppositories, I keep feeling I am expelling them as soon as they melt! Maybe getting them past this 'trigger' zone could help?
that
vin1602 wrote:
<quoted text>
Thanks for replying Jennifer (apologies for my delayed response). Your comment makes obvious sense wrt the trigger zone, which when stimulated mechanically by the enema then elicits the urge to visit the loo (bathroom in the States!!)- I am seeing my lower GI consultant at the end of this month and I will suggest the product you mention - if you have any more details of this product for potential use in the UK (ie can I get the applicators here?) I would be very grateful. Since my first flare up, I typically have severe symptoms for 3 weeks, 4 weeks clear, then another three week flare-up. It is quite debilitating as you know. Had never heard of proctitis a year ago when i thought I was well :-(. Thanks though.
CeeJay, thanks also for your thread re enema - it all helps a new sufferer
CeeJay, thanks also for your thread
JenniferJoyce

Sudbury, MA

#189 Jun 12, 2012
Hi CJBee,

Yes your feeling the need to expel is due to improper placement. Check out the information regarding InsertEase applicators. christcotmedical.com or just google Insertease. They may help you and eliminate that urgency to expel the medication.
Wishing you the best!
CeeJay

Rockingham, NC

#190 Jun 12, 2012
CJBee, I hope things get better for you soon. My thoughts are with you.

Since: Jul 12

Australia

#191 Jul 17, 2012
Hi Kim,
Thanks for your offer of help, I am very interested in receiving an email from you regarding your food, shopping etc to help change your diet to control Proctitis. I am sick of relying on prescribed medication (Pentasa) to control this and would prefer to put more confidence in my body to right itself with the correct nutrition. Although Pentasa helps to stop the bleeding and mucus it creates stinging and ridiculous itching around the rectal opening, this tells me my body is not happy with the medicated option. My email is [email protected] I look forward to your reply.
The Light

Orlando, FL

#192 Aug 31, 2012
Ulcerative Proctitis Cure- DOUBLE LABEL DOSE
1. SAMe
2.Pregnolone
3.glucosamine
4.Hemp Protien
5.BILberry
Steph

Orange, CA

#193 Sep 29, 2012
I have found a gluten free dairy free diet with additional supplement - glutamine, omega 3' s , probiotic and digestive enzymes are all ver healing . When I fall off the wagon and do dairy or gluten that's when I late up
karen18020 wrote:
i have suffered with proctitis for the past 3 years and my life is a living hell.
at the moment i am symptom free with the help of asacol and azathioprine.
i have an ongoing problem of anxiety because of this and i hate going out anywhere where i know there wont be any toilet facilities.
i had an " accident" last year when taking my daughter to school, which was embarrasing and very upsetting for me.
i now have to make sure i go to the toilet before i leave the house and i get really anxious about taking the children to school so much that i tremble , get sweaty and this just makes it worse.
its a vicious cycle and i'm miserable.
i dont want to take pills for this anxiety.
is there any one out there that has had this problem with their condition and how did you overcome it.
karen
Steph

Orange, CA

#194 Sep 29, 2012
[i too am interested in your grocery list Kim. i am a nutritionist and have been able to stave off the UP when i am diligent about eliminating gluten and dairy but i would love to see what you specifically eat . I advise all my clients to go gluten and dairy free. i feel that the missing nutrients that would be in dairy and gluten can usually be replaced with veggies, or if necessary supplements.
Here's my email [email protected]
Thanks for your offer of help, I am very interested in receiving an email from you regarding your food, shopping etc to help change your diet to control Proctitis. I am sick of relying on prescribed medication (Pentasa) to control this and would prefer to put more confidence in my body to right itself with the correct nutrition. Although Pentasa helps to stop the bleeding and mucus it creates stinging and ridiculous itching around the rectal opening, this tells me my body is not happy with the medicated option. My email is [email protected] I look forward to your reply
Cindy

Tempe, AZ

#195 Oct 1, 2012
My husband just got diagnosed with Proctitis, we are seeing a colon/rectal surgeon. Should he be seeing a GI doctor instead?
Maria

Hay River, Canada

#196 Oct 14, 2012
Has anybody tried the suppository salofalk? I was diagnosed with UP about 2 years ago. After my pregnancy, I started to notice changes in my BM (mucus). The stupid/overly fearful side of me ignored it for about a year bcause I was too scared to find out what it might be, and hoped and prayed that it would go away on its own. It wasnt until about a year later when I had a BM, and noticed a small tinge of blood in the toilet. I freaked out of course and went and got myself checked. The doctors instantly assumed it was inner hemmeroids (caused by my pregnancy) and gave me medication for it. Obviously, that didnt work. Finally after seeing a few doctors, and more bleeding, I was finally given a sigmoidoscopy. As soon as the doc could see in there, he could see inflammation and took a biopsy. It turned out to be ulcerative proctitis. The first time I was put on salofalk, it worked magnificently. I was free of symptoms for a few months..however, I did end up with another flare up about a year and a half ago and was put on a steroid (I dont rememebr the name but I think it was corti-foam?).. this was a nightmare.. the bleeding got worse, I was experiencing other side effects (abnormal heart palpitations that finally seems have to stopped). I stopped the corti-foam, and went back to the salofalk, and now for some reason, the salofalk isnt working :'( Ive monitored my diet and have found that the more fiber I eat (or the softer I keep my bm), there will be little, to no blood. Flax, oatmeal, kidney beans, almonds all seem to work wonders for me, however, it can get hard sometimes to be able to incorporate enough fiber into my diet (I am a single mother and a college student, so time and money is tight...) This is really stressful, and with being a single mother to a young boy, and a student, this just adds more to my stress..

have any of u found natural ways to control your symptoms??
CeeJay

Norcross, GA

#197 Oct 14, 2012
No, unfortunately I had to use the meds. I was put on Rowasa(sp) but I still had the bleeding and mucus so my GI added Asacol to it. It finally stop. I tried to wean myself off of the meds but my symptoms returned. I take maintenance meds. I hope you find what works for you. I have read on healing wells form about SC diet some on there says it works for them.
Jodie

Australia

#198 Oct 30, 2012
kia15 wrote:
I was diagnosed with ulcerative protitis 15years ago. Every now and then I have flare ups but for the most part I live a normal life. I used to take asacol until I found out that one side affect is renal failure(kidney failure) so now when I flare up I take a rowasa suppository. Someimes I wonder why I had to have this disease, but some people have worse things going on.
rowasa causes renal failure As well
JAZ

Portland, OR

#199 Nov 5, 2012
I was diagnosed with Ulcerative Proctitis about 13 years ago. I was given Asacol and found it to work pretty good. It helped me control some of the bigger flare ups.
However, I found that drinking Pinot Noir wine helps me prevent flare ups entirely. I don't know why, but I've noticed that my flare ups tend to start right around the fall of every year. I don't drink wine on a regular basis, but when I start experiencing some symptoms, I crack open a bottle of wine and drink it over the span of a few days. Doing this has helped me avoid taking Asacol all together. I still purchase my meds just in case, but I normally toss them because they expire.
Not sure if it will help you, but I figured it was best to share what's working for me. God bless.
Ricardo

Central District, Hong Kong

#200 Nov 16, 2012
Hi, i was today after a lower endoscopy diagnosed with Proctitis & Hemorrhoids. i mean i havent really been suffering with bowel problems except having major heartburns but instead with bad breath. tried fixig with oral hygene but couldt find a so went to a digestive specialist. and now after reading all the above am kinda worried what im in store for. any help / advise poeple?
Gretchen

Fort Collins, CO

#201 Nov 16, 2012
Maria wrote:
Has anybody tried the suppository salofalk? I was diagnosed with UP about 2 years ago. After my pregnancy, I started to notice changes in my BM (mucus). The stupid/overly fearful side of me ignored it for about a year bcause I was too scared to find out what it might be, and hoped and prayed that it would go away on its own. It wasnt until about a year later when I had a BM, and noticed a small tinge of blood in the toilet. I freaked out of course and went and got myself checked. The doctors instantly assumed it was inner hemmeroids (caused by my pregnancy) and gave me medication for it. Obviously, that didnt work. Finally after seeing a few doctors, and more bleeding, I was finally given a sigmoidoscopy. As soon as the doc could see in there, he could see inflammation and took a biopsy. It turned out to be ulcerative proctitis. The first time I was put on salofalk, it worked magnificently. I was free of symptoms for a few months..however, I did end up with another flare up about a year and a half ago and was put on a steroid (I dont rememebr the name but I think it was corti-foam?).. this was a nightmare.. the bleeding got worse, I was experiencing other side effects (abnormal heart palpitations that finally seems have to stopped). I stopped the corti-foam, and went back to the salofalk, and now for some reason, the salofalk isnt working :'( Ive monitored my diet and have found that the more fiber I eat (or the softer I keep my bm), there will be little, to no blood. Flax, oatmeal, kidney beans, almonds all seem to work wonders for me, however, it can get hard sometimes to be able to incorporate enough fiber into my diet (I am a single mother and a college student, so time and money is tight...) This is really stressful, and with being a single mother to a young boy, and a student, this just adds more to my stress..
have any of u found natural ways to control your symptoms??
Google David Klein and get his book self healing crohns and colitis
Jennifer Joyce

Sudbury, MA

#202 Nov 16, 2012
Hi "Gretchen,
I have had similar experiences. I have added small amounts of Miralax (the generic brand). It is difficult to add enough fiber. I find the supps work best for remission time. Diaper cream works for calming external areas, I find. Also, I prefer the cortisone supps to proctofoam. You are right: it is dreadful.
~JJ
Jennifer Joyce

Sudbury, MA

#203 Nov 16, 2012
Hi Ricardo,
Yes, it is alot to handle in the time shortly after diagnosis. This will be with you for life but you will learn everyday what works for YOU. I have terrible heartburn that agrivates my Crohn's and Proctitis. My disease has progressed significantly and I find that noticing what happens with treatment or diet changes makes things hard. When I overtreat the heartburn, I have trouble with Proctitis. You'll find the balance with time and listening to your body reactions.
Wishing you great health, JJ

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