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Ulcerative Colitis
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Flowermay45
New Member
Joined : Nov 2020
Posts : 16
Posted 11/8/2020 9:48 AM (GMT -7)
Hi everyone,

Today I’ve been diagnosed via colonoscopy with Proctitis!

I’ve been waiting for the appointment for a while and found this forum whilst waiting and it has been such a great help and relief knowing there are others going through the same as me.

I start my treatment today (Salofalk suppositories) and am so relieved I finally know what’s wrong with me after not feeling great for a while. Any tips on taking this treatment would be great too and what to expect.


I have another question - does diet affect Proctitis at all? If so, what do you recommend eating?

Thanks so much

UK based
Female (27)

Xx
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LondonRed
Veteran Member
Joined : Oct 2007
Posts : 1258
Posted 11/8/2020 11:24 AM (GMT -7)
I’d say you should feel good it’s proctitis which is very manageable and eat whatever you want. Do normal things like ensure you have dietary fiber and don’t strain on the toilet etc.

During a flare though; try to avoid things that irritate the gut like spicy food.
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quincy
Elite Member
Joined : May 2003
Posts : 32483
Posted 11/8/2020 11:49 AM (GMT -7)
Diet doesn't affect it...but diet does affect the consistency of stool.

I suggest you also ask for oral mesalamine even with a proctitis diagnosis.

What is location extent of inflammation and what exactly are your symptoms?

Welcome to the forum.

q
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Jane974
Regular Member
Joined : Feb 2017
Posts : 396
Posted 11/8/2020 2:41 PM (GMT -7)
I think it's a stretch to say that diet doesn't affect UC or UP, either symptoms or inflammation. There is data on SCD and IBD-AID diet that demonstrates some effectiveness, in terms of lab parameters and some reduction in meds after the diet. We also have self report data from thousands of people on SCD to add to this literature. Just because there are not enough RCT's on diet, does not prove that it doesn't affect UC. You can add me to the list of people with long remissions and never having to go on corticosteroids or biologics due to diet. Some biologics cost 100,000 per year or per injection so there is significantly more interest in research, promotion and marketing of pharma meds.

This is taken from a review in nutritional issues in gastroenterlogy, 2019. Some of the research is with CD: https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2019/08/Specific-CHO-Diet-August-2019.pdf

Burgis and colleagues from Stanford conducted
a retrospective study investigating the effects of
the SCD in maintenance of remission in pediatric
patients with CD over a one-year period.1
They found significant improvements in lab parameters
(hemoglobin, albumin, ESR) with implementation
of the SCD in patients who were treated with and
without immunomodulatory therapy, and overall
patient height and weight also improved. All effects
persisted with liberalization of the diet, with the
exception of weight gain (50% of patients lost
weight when SCD was liberalized). While the study
was small (n = 11 patients), this was the first study
investigating liberalization of the SCD.
Another survey-based case series of 50 patients
with UC, CD, or indeterminate colitis from Rush
University Medical Center demonstrated that
66% of patients reported complete resolution of
IBD symptoms on the SCD after an average of
9.9 months.7
The majority of these patients were
adults, but pediatric patients were also included.
On average, the diet was also rated to be 91.3%
effective in controlling acute flare symptoms and
92.1% effective in maintenance of remission of
IBD

After 3 years of full remission, I'm in the middle of a flare and until I went back to SCD fully (no grains, etc), I wasn't able to manage the bleeding despite daily mesalamine enemas and balsalaside. I upped the enemas to daily, but it wasn't enough without the addition of the SCD diet. The two combined seem to be helping with bleeding, formed stools and mucous (will post in a week with an update). The last 3 years I added some gluten free grains to SCD (oatmeal, brown rice) so I wasn't doing it fully. At minimum, eliminate processed foods and try gluten free if you don't want to do full SCD.

Post Edited (Jane974) : 11/8/2020 3:00:51 PM (GMT-7)

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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 877
Posted 11/8/2020 3:40 PM (GMT -7)
Diet helps some people but not others. It didn't help me and I gave myself malnutrition, exhaustion and mental health problems trying to follow dietary and various other alternative methods.
I am grateful every day for the drugs that put me in remission and being able to eat what I like without fear or anxiety.
The cost of biologics depends heavily on where you are based - for example in Europe they cost around 20% of what they do in the US.
But with proctitis and a starting treatment of suppositories the odds are in your favour that you won't ever need biologics.
Do be aware that there is a bias in these forums for the more severe and non responsive cases, because if a treatment is working for you then you generally don't want to hang out on internet forums....
Just relax and take your meds, good luck.
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Flowermay45
New Member
Joined : Nov 2020
Posts : 16
Posted 11/12/2020 7:44 AM (GMT -7)
Hi all,

Sorry about the slow response! Unfortunately I was admitted to hospital on Tuesday as my RBC was dangerously low but am home now and feeling better! What a rollercoaster!

@quincy 20cm affected. My symptoms are bleeding heavily with each BM, constipation, mucus, bad urgency & anemia. I have a follow up appointment next week w my GI to discuss oral tablets. The suppositories are working well already, far less urgency & blood. Hoping it will continue to improve smile

Thanks all for the advice on diet etc I will take note: I eat well so I will just continue.

One question, can suppositories cause anxiety/panic? Reason I ask is I’ve felt more anxious than usual but that maybe due to the past month of worrying and procedures!

Thanks !!! smile
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quincy
Elite Member
Joined : May 2003
Posts : 32483
Posted 11/12/2020 10:47 AM (GMT -7)
Hi...its good you went to the hospital and found out about low rbc.

You need to be on a higher dosage if mesalamine...and your inflammation is reaching toward the sigmoid. Request retention enemas of 4g and oral mesalamine.

No...the supps don't cause panic/anxiety...your thoughts do. But a low rbc can cause a weak and shakey feeling.

Hang tough and keep us updated on how you're doing

q
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Flowermay45
New Member
Joined : Nov 2020
Posts : 16
Posted 11/12/2020 10:52 AM (GMT -7)
Hi @quincy,

Thanks ever so much.

I will speak to my GI about getting other meds.

Feeling better now have rested and glad to know what’s wrong so I can work on getting better.

Will keep you posted!

May x
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DaisyZee
New Member
Joined : Feb 2020
Posts : 16
Posted 11/12/2020 10:56 AM (GMT -7)
I also have proctitis which is quite stubborn and sent me to the hospital twice this month. I agree with Quincy about oral mesalamine and enemas. I was in remission for 6 years using Lialda and Canasa and that was lovely. Moving on to Remicade now, which seems to be working. Diet doesn't seem to have an effect upon my disease, but what I eat can irritate my symptoms when I am in a flare. For example, the GI put me on low fiber for the time being to give my colon a rest. Eventually, I will add the fiber back in when she's all healed up. Good luck and this is a great forum to get information and support.
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Flowermay45
New Member
Joined : Nov 2020
Posts : 16
Posted 11/12/2020 10:59 AM (GMT -7)
Hi daisy,

Thanks very much.

This forum is so helpful, I will defo get on to my GI about oral mesalamine and enemas.

Thank you smile
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