Proctitis HELP!! HOW LONG??

Hi there,

Ok so this proctitis flare started maybe 3 weeks ago and it got better with mesalazine enemas and supps and the blood nearly stopped so i switched to penatasa supps only. Wrong move!!! the proctitis came back about 7 days ago and made me miserable! Going 4 times all in the morning and that feeling that not all is out olus the rectal pain.
The mesalazine enemas are taking ages to kick in and im sick of using these 'patch-up' treatments; i want to STOP the inflammation not deal with it when it comes!!

SO in addition to me diet in the signature i also have eliminated dairy 2 days ago, and added tumeric 1g/day (5 days ago) and licorice root 2g/d (2 days ago). First after the turmeric it seemed like i was losing more blood (tumeric is a blood thinner) however I noticed some improvement yesterday in that wasn't just 'squirting' blood and the amount of bleeding lessened. Sorry if TMI.

Then yesterday i started aloe vera juice (made from the soothing inner gel only) 40ml twice a day and today i noticed bigger improvements (touch wood). Rectal pain also improved alot.

I called my GI yesterday and she's like: "gee i dunno why the mesalazine enemas aren't working ...hmm this is not good what do you think we should do?"??!!! what the?? i mean after i heard that i just wanted to dig a hole in the ground and bury myself because i felt sooo helpless and hopeless...i mean my GP, GI and the naturopath (and im a nutritionist) we are all gobsmacked and don't know what to do to fight this disease?

I mean what is this do we live in the 11th century where such a serious condition still has no way of being treated than just overloading you with mesalazine?

Why don't doctors do more research? i come from a family of doctors (both sides) and most of our friends are doctors and when i first started exhibiting symptoms after giving birth NO BODY, except maybe one, even suspected this disease! this is how little known it is!!! and NO IT IS NOT A RARE CONDITION...it's just because alot of people just suffer silently and we need a spokesperson!!! that's right! somebody to go on the news and frigging talk about this condition just like they do with cancer and MS...etc. But we are all hiding in out toilets (me included) because we are ashamed but you know what??? not any frigging more ive told all my friends that i have it and even when ask for details i GIVE THEM DETAILS!!! we need to collect donations and get research going just like they do for all these other conditions out there. All the research is being done on how to suppress the immune system and giving us more and more and MORE immunosppresants and anti-inflammatories but no one is doing research to find what is CAUSING this>> or what would happen if we boost the immune system instead?

Sorry but just had to vent i see all of you here on this forum and you all sound like such fantastic beautiful people who deserve a better life than this. Im so sad not just for myself but for everyone who is suffering from these incurable diseases.

I just want to cry and have been crying alot since this flare started because i was just getting my life BACK and was thinking of TTC again but now i feel like my dreams of having another child and building the family i have dreamed of are being destroyed right infront of me and i just have to watch and be like meh.
My husband and mum, who are both supportive, think i need to just understand that this is how life is going to be from now on for me; that im going to have flares here and there and that this is the way this condition is. But i refuse to surrender to his quality of life!! i KNOW that there has got to be a way of avoiding flares or dealing with them quickly; preferably just avoiding them alltogether! But now after this flare (which happened after cheating on my diet and travelling so some stress involved) im getting really depressed because i wanna live and travel and take risks and enjoy life; i mean i can't live in a shell just so i don't expose myself to stress (physical or emotional) or diet changes and subsequently risk a flare??


I have a couple of questions to those who have had this disease maybe for longer than me if they can share some of their wisdom:
1- How long do proctitis flare last usually
2- when is the flare over: when rectal pain improves or when blood stops? how do you know it's not hemorrhoids?
3- How long should i maintain these dietary supplements/enemas after the flare is over?
4- How do you deal with the feelings of defeat and depression that comes with these flare? and the fear that 'what if' it gets worse? (especially if you have been there when it got worse)


I look forward to reading your replies :)

Healing wishes to all of you

When do you declare your flare over and call it remission? That's a good question. This was discussed recently here. For me, remission means back to 100%, completely free of all symptoms. But there is a gray area too. What do I where I am now? I am operationally 100% - normal bm's, strength back, the uc is not impacting my daily life operationally. But I know there is activity still, I can feel it. And this is the tail end of a flare that started slowly in November and peaked in mid December. So I don't consider myself in remission but I think some people would call this remission.
As to the enemas and suppositories, for me, if I start seeing signs and start them, I run it for the month even if it seems to clear after a week because there can always be activity you don't see, so just to be safe.
If you have mild uc/up as I do, you shouldn't see this as ruining your dreams in any way. Why do you feel this would stop you from having more children?

Bootiful,

Get a new doctor. You need one. Leaving uc untreated can be very bad, you need to protect your colon. Once you have a condition like this you start to learn that there are a lot of crap doctors out there. If this one isn't helping you, get another.

Thanks Michelejc, Gonk and bootiful...Gonk i guess the reason i think this impacts me having more children is because i don't want to be pregnant and losing blood through the proctitis and also have to go on whatever meds like the steroids which i don't want my baby exposed to. Also, when im in a flare i use all kinds of herbal supplements which if i was pregnant i wouldn't be able to because they may affect the baby...so yeh these are my thoughts.
I think i want to be in remission atleast before ttc...?

Bootiful iam so sorry to hear what you are going through...i hope and wish for you to get better asap...i strongly recommend you try the herbal supplements i mentioned taking in my post atleast until you see the new GI. They really do help. Im feeling better today but tomorrow will really tell.

I think that i, for a while, thought that i had this whole uc thing under control with diet and the meds. Now i realise that i should have used maintenance rectal meds atleast twice a week, like some members here do, even if i had no symptoms. First i have to get out of this flare first and then i will try to follow this regime for a while and see if it works.

I don't know i maybe too optimistic but i really believe that everyone of us with UC needs a certain cocktail of meds/diet/supplements that should keep them in remission. But i think how much and in what combination is really individual.

by the way has anyone used aloe vera juice/gel before and did you feel faint from it? i somehow feel a bit faint a while after i take it.. like woozy kind of feeling and tired ...?

ConquerUC,

Mesalamine enemas are good but proctitis is the hardest to clear so I find cortifoam(foam enema) much more effective.  Its great because you can use it during the day and its easy to retain.

As for the blood, I've mentioned it many times before about adding vitamin e 1000iu (oil from capsules) into your enema.  The vit e helps to heal and usually clears up the blood.  Lubricate the tip with vit e as well.  Rub the rectum with vit e.

Hemmeroids are very painful, they bleed, swell and it feels like a lump at the rectum.  Hot baths with epsoms salts are great.  Take a mirror and look down there if they are on the outside they look like fleshy balls.

Using enemas for maintenance is great at least a couple times of week, depending on BM's.

I noticed you take benefibre, I find metamucil much better.  Benefibre didn't seem to bulk the same for me.

the only thing i can say truthfully about uc is that everybody is so different, which adds to the frustration.

 

i have had flares last 3-4 months and then  had years of beautiful remission (a 10 year remission and a 5 year remission) with  no symptoms.   My most recent flare up has lasted 3.5 years with no remission.

 

they say the rectum is the last and hardest to heal......

 

this forum has been one of the best things i have found to deal with the mental component of this disease. 

 

i hope you feel better soon :)

 

 

puffed rice said...
ConquerUC,

I noticed you take benefibre, I find metamucil much better. Benefibre didn't seem to bulk the same for me.

puffed rice i tried metamucil but it makes me constipated!! it's weird i know but i tried it for two day and i drank lotss of water with it but made me more constipated in that it was harder to get the urge to go and when i went i had to push harder (sorry if TMI).
Benefiber makes things softer and easier to pass so continued on it. But yeh i'd love to find something like metamucil that didn't constipate me.