HealingWell
Search Close Search
☰

Proctitis

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/14/2016 9:46 PM (GMT 0)
Hi , pretty new to forum and Have been diagnosed with proctitis ibdand suffer with horrendous health anxiety ( this has been lifelong not due to this )

First got symptoms last Feb after quitting smoking - went to the doctors a total of 14 times ( was fobbed off with fissure and piles or it was all in my head until referred for piles banding and turned out I had distal proctitis , they took biopsies told me I would get a letter in a week -(still not had this letter) that was November - they then have put me on 1g pentasa suppositories per night - had a specialist appointment Feb 18 -specialist was busy so saw the registrar - biopsies inconclusive but 100 percent either crohns or ulcerative colitis and also added I had brought this on my self by quitting smoking - subscribed me Octasa 2.4 a day ( not made any difference except more bleeding therapist has now signed me off as I am no longer depressed and health anxiety is just part of who I am


Anyway my main question is my main symptom is just feeling like I need to go at least every hour but nothing but thick yellow mucus with sometimes a hint of blood ( mainly just the mucus - is this a normal symptom as I can not find anything on these forums with just this every day for the last year this is happening and it's so unconfortable holding it in all the time - I do sometimes have 3-6? Bm per day but this doesn't bother me it's just the mucus as it's worrying me as no one else seems to just have these symptoms ?

Thanks in advance any advice would be appreciated ( again I'm sorry I know I shouldn't be marding about my mild symptoms just highly anxious and just stuck with what can help and the doctors don't seem bothered as my symptoms are only mild i just want to control it
Posted 3/15/2016 12:56 PM (GMT 0)
Ok so you haven't had a full scope at this point? That may be part of the problem. You may have inflammation further up that isn't being treated by those suppositories. I would at the very least ask for enemas instead as they will reach further up. Mucous and blood are normal parts of having UC when you are flaring. Having up to 6bms a day also sounds like a flare and as I said you are being under treated. You more than likely need an oral medication too.
Posted 3/15/2016 5:20 PM (GMT 0)
Did the doc actually say "you brought this on yourself by quitting smoking".....or "it was because you quit smoking"...needing clarification.

Whatever a trigger is....if you were smoking then quit, the smoking was helping to control symptoms, but you would have still had it anyway. Quitting would have probably exacerbated your symptoms considering you don't know how much inflammation you would have had, nor would you have recognised the symptoms.

You do need a complete c-scope, and you do need to be on stronger rectal meds such as a 4g retention mesalamine enema.

Your symptoms are normal for flaring.....whatever is in the rectum, be it stool, blood, mucus....it will be expelled as a protection factor in an inflamed rectum.

When is your next appointment?

Welcome to the forum.

q
Posted 3/15/2016 6:43 PM (GMT 0)
Sorry I should of been more specicific I had a flexo sigmoidoscopy and they said the inflammation was just limited to the rectum further up was completely clear they took biopsys and they came back inconclusive but they think it sounds more like uc than chrons symptom wise and yes the smoking they didn't exactly say them words but they said smoking was the trigger and if I were to smoke again my symptoms would ease but obviously they said not to do that as they are much worse health problems that could trigger - just Rubbed salt in the wounds I haven't had my next app through but they said it would be in about four months (from Feb 18th)


The supppsitries don't seem to be making any difference and the octasa ) oral meds aren't making a difference


Would my doctor help or do I need to see the specialist
Posted 3/15/2016 7:21 PM (GMT 0)
You do realise that one can have inflammation higher, and there is a form of UC that is rectum and cecal patch. So...I (and most of us) would strongly encourage you to have a total c-scope.
To me, a doctor is remiss in making a possible diagnosis of either UC or CD or inconclusive without looking at the full colon/cecum and into the terminal ileum.

Since you've been at this for a month on the suppositories and the Octasa...call the doc who prescribed the supps and REQUEST to try the retention mesalamine enemas. I don't know what brands are available where you live...what country are you in?

Who diagnosed you...a gastro doctor? And who would you be seeing in 4 months...do you not have that appointment? or is it yet to be made?

q
Posted 3/15/2016 9:07 PM (GMT 0)
I saw a gastro and they said they don't need to do a c scope as i did question that - they dont think its neccesary right now ? They said from the biopsy it looks more likely to be uc rather than chrons as it affects the mucosal lining and they said uc doesn't tend to be patchy ? And they said as my symptoms don't seem too bad ( im not in any pain ) they wouldn't think it neccesary unless they get worse I'm just going off what they told me - I live in the uk. They told me they would send an appointment through but I haven't recieved
Posted 3/15/2016 9:10 PM (GMT 0)
To be honest I saw the registrar as the specialist was busy and any questions I asked he didn't really know the answers he said its a disease that we dont know much about so it's a case of trying different medication - he wasn't all that helpful
Posted 3/15/2016 9:54 PM (GMT 0)
Call the registrar or whomever again and request the enemas since he thinks it's a case of trying different medications.

As well, call and ask for your next appointment.

One person to say your symptoms aren't "that bad" is making it subjective since you don't have a lot of experience as of yet to determine that statement. Just because you're not in any pain...doesn't mean you shouldn't have effective medication.

Ask for the enemas.

q
Posted 3/15/2016 10:21 PM (GMT 0)
Resitant starch diets are good for proctitis . If interested check in this forum or the net. it will help to build up the bacterial flora in the proctitis area.
Also check into butaryte enemas .

Not sure if you heard and interested in it - check into fecal transplant too!!


Best wishes...
Posted 3/16/2016 1:26 AM (GMT 0)
hmmmm my proctitis symptoms were very very similar to yours if not the exact same, never pain or bowel issues, just annoying battles with mucous... and sometimes hints of blood embedded in the mucous.

Although your proctitis is just mucous, and is minimal, it can be INSANELY stubborn as im sure you are experiencing... I was in my last "flare" for a solid 2 years.... and my only symptom was mucous... for me it took 2 full darn years to find a medication that put me out of mucous land.

You know what medication did get me into remission though, the steroid enemas alongside the oral mezavant.

My doctor for awhile was like, ya we must treat at the spot and I tried everything, the pentasa suppositories, enemas, you name what you can shove up there and the only one the helped was the steroid enema... but it would always get me back to just the tiniiest dabs of mucous and eventually after coming off the steroid enemas the mucous would return and get more and more with time, it wasnt until by fluke we tried the steroid and the oral mezavant at the same time and voila, after 2 years of mucous helll, i was in remission, i've now been in remission for almost a year THANK GOD! I don't know if this will work for you BUT, hoping the steroid enemas may help like they did for me... I was on them for 2 weeks that's it and along with the oral was back to zero mucous, again keep trying meds and switching them up until you find your self with NO MUCOUS, i always made the mistake of thinking "oh my mucous is almost fully gone, im good" nahhhh it comes back, until you find a medication that blasts it.... PROCTITIS IS SO STUBBORN AND FRUSTRATING, i remember my doctor always being like this is the most stubborn case I;ve ever seen and always being puzzled!!!


Anyways best of luck let me know if you have any other questions / thoughts, I remmebr being diagnosed too and struggling to find people experiencing just mucous... so ya I feel ya there
Posted 3/16/2016 7:38 AM (GMT 0)
Thanks for your replies

@kv18 It's nice ( or not ) to know someone's in my situation it's like a wake up everyday thinking it's this going to be the day it goes away sometimes I get until about 3 o clock with nothing but then it reappears again !i just feel like the doctors aren't overly bothered as like I say no pain - I just spend my days trying different thinks to get rid of this mucus - I'm going to call the gastro today and see if I can persuade them try something else x
Posted 3/16/2016 1:04 PM (GMT 0)

KV18 said...

You know what medication did get me into remission though, the steroid enemas alongside the oral mezavant.

which brands were you using? I'm about 6 months + into a stubborn flare. Tons of urgency and it's just mucous blood clots 70% of the time. My destination wedding is in 2 months so I'm starting to worry.
Posted 3/17/2016 10:26 PM (GMT 0)
Ok called the gastro receptionist on annual leave until next Friday cannot get hold of anyone through an alternative number - question anyone know will my doctor prescribe me anything or is it just the gastro that's able to do this- sorry if that's a stupid question I just don't want to waste my time
Posted 3/18/2016 6:41 PM (GMT 0)
You can request to talk to another doctor or for an appointment with another GI in the clinic. or...if you have a GP...go and see him or her or call and ask to speak personally.

q
Posted 3/22/2016 1:03 AM (GMT 0)
Ya I understand I had the exact problem, again my doctor was the same, not overly worried since we aren't as bad as others... but again be persisitent in seeing the doctor and rotating/trying new meds until something works, i had almost lost faith after 2 years but thankfully eventually something worked... keep trying good good luck

if your doctor is away also, i would always go to my family doctor and they could prescribe stuff tooo, they should have access to your gastros notes on whats hes prescribed and every time he's seen you, whihc is why they will prescribe!
Posted 3/22/2016 7:25 AM (GMT 0)
Thanks I went to see them and they doubled the dose of my oral meds

In confused although now as I have indeterminate colitis they are not 100 percent sure whether it's crohns or uc - the registrar and the guy that did my flexo sig said it's more likely to be uc but now the doc I saw yesterday said the notes say it looks more likely to be crohns - confused
Posted 3/22/2016 5:08 PM (GMT 0)
You don't mention anything about retention enemas.....

q
Posted 3/22/2016 7:55 PM (GMT 0)
No I asked him about that and he said there's no point as the oral meds should work mad I need to get hold of my gastro when they are back
Posted 3/22/2016 10:05 PM (GMT 0)
yes, you do need to get hold of your gastro asap upon his return. A very disappointing response from whomever you saw. Is that person actually a gastro doctor?

Let us know how it goes.

q
✚ New Topic ✚ Reply