Proctitis

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Hello

I am 29 years old. I have been having rectal bleeding for the past 8 weeks every single day it is bright red and dark red with white mucus and clots. i have also been using the toiler upto 10 times sometimes more a day. Feeling weak, and fatigued

i had an appointment at the colorectal clinic today. the doctor did an internal check and said that he can see inflammation in my rectum

He says he thinks its ulcerative colitis and has booked me in for a colonoscopy.

my question is has anyone had the same problem and had ulcerative colitis with proctitis? Has anyone any experience with this

Thank you

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14 Replies

  • Posted

    Hi Sophie 

    Yes I had very similar symptoms and was diagnosed with ulcerative colitis last year.  proctitis seems to refer to where the ulceration is found - that’s what I have. 

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  • Posted

    I was diagnosed with ulcerative proctitis with similar symptoms to yours about 18yrs ago.

    its now ulcerative colitis and right through my intestines aswell.

    UP is a few cm/inches of the small bowel to the rectum if my memory is correct.

    UC is is further up into and through the intestines.

    Getting a good specialist helps and asking on here as sometimes we know more than most doctors as we live with it.

    Finding the right meds is the key to stopping it flare. But you will have very little energy and plenty of pooh trips. 

    Dont let it grind you down and keep yir chin up.

     

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    • Posted

      Thanks. can you please tell me what shall i eat for the past 8 weeks i have been living on salad and soups and the doctor hasnt really said anything

      Also if they find UC after the colonoscopy, will they give me the medicines after the colonoscopy like straight away. because i really need the bleeding to stop and most of all the fatigue its killing me rolleyes

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    • Posted

      Hi Vijay

      Will my Gp give the medicine without having my colonoscopy done first? i dont eat vegetables because it makes it worse for some reason...

      I only eat bread i cant eat potatoes either cause that makes it worse too rolleyes

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  • Posted

    Hi Sophie...  Proctitis is a form, I believe of UC, but it is usually just in the rectal area.... Mine took forever to settle and actually became moderate/severe distal UC.  I was really bad and not even realising it, I was also constipated despite doing a toilet marathon. The last colonoscopy said I only had mild proctitis so it can be a bit confusing when it seems like it's going from one diagnosis to another but all in all, it's UC - at least for me.  It's possible they won't give you anything until the colonoscopy which is to say the least a bummer.  I wish mine had been sorted more quickly.  If you really do get bad... head for the A&E which is possible that it could speed things up.  I had a flare last June and after 2 trips within a week, they got it sorted!!!  (The GI nurse I have is one where you feel like banging your head against the wall - the short of a long story!!!!)

    What to eat.  Now that seems to be a mystery because everyone seems to be different!!! And when you're 'flaring' everything seems to to some extent cause problems I can't tolerate raw onions despite lovin' them.  Salad can cause me problems as does carrots and hummus!  mmmmm... Hard cheese will back me up despite being able to eat a block of it (2+ allergy when I was younger to dairy)...  Sometimes I'll do scrambled eggs and gluten free toast.  I found that to some extent, gluten causes me problems - but then I did have in intolerance to wheat (a 2+ allergy) years ago and I do notice when I eat too much gluten or wheat based (i.e. a succumb to something naughty!)

    You'll also see some people swearing my supplements and all sorts.  Again, everyone is different and there have been studies on some of these supplements - these include probiotics.  They did nothing for me but I found the nicotine patch helped.  Not sure if it lessened the pain or the stress but then for some, it didn't work.  I've also taken to salmon oil caplets and have been for about a month and things are settling despite a stressful time of the year for the job I do.  They say the best is the real stuff but since all this started from food poisoning from eating fish, unless it's tuna out of a tin or the odd bit of smoked salmon - fish is virtually out unless I am the one cooking it to complete oblivion and then nuking it for an extra blast! 

    I hope your scope isn't too far away.  Again some brave it without the 'sedative.'  I did sort of the first time but really I'm a super big chicken and prefer now to be knocked silly through it but then that's a personal decision.  I wish you the very best and hope you get it sorted really really soon!!!!!

    Take care

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    • Posted

      My colonoscopys next week smile Im a little nervous and atm my pain threshold is zero so i will be taking whatever they offer. i am not taking any chances. I really hope it gets sorted soon because it feels like this has been going on forever. I did think of going to A and E once or twice but wasnt sure what exactly they can do as my own gp was pretty useless and kept telling me i had a urine infection. and haemoroids( this was without checking). But i will wait to see what happens after the colonoscopy.
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    • Posted

      Hi Sophie... let the nurse know when you get your pre-talk on the day that you want sedation as they may have to get it set up for you beforehand or let the GI specialist or the department know a few days before your appointment so they're well prepared.  My GI pretty much knows now I want the equivalent of a really good bonk on the head when I have one done... so they're ready for me!!!!

      I didn't go to A&E at the start but should have - I didn't even go after I passed out on a busy train from being so ill (albeit after the diagnosis and the drugs no working and the GI Nurse not listening and)....  But they do say hindsight (no pun intended!) is 20 20 vision!

      I wish you the very best and that all goes well next week and they get it sorted for you quick smart!

      Take care

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    • Posted

      Hi I just signed up. While I am not the patient my grandson age 22 never had this problem before has recently been given a CT scan and they told him he has colitis they did not say which kind the second CT scan said it showed slight Improvement.

      He is on medication, but what started it was he had pleurisy which was inflammation in his lungs, and the antibiotics they gave him for that caused an overgrowth (hypothetically) in his colon, which caused the inflammation, well now he has pneumonia on top of it, so he's on more antibiotics, although the pneumonia is getting better the other is not he is now having dark stools and he's very hungry he does not eat much he's lost 12 pounds. Everything runs through him. he doesn't know what to eat. I'm not there I'm in Ohio and he's 4 states away. So I'm looking for information and it's conflicting on the internet some say Don't eat wheat white or wheat bread don't eat anything made out of white flour and don't eat raw vegetables or raw fruit because it's high in fiber, that I understand.

      He is also a burn Survivor from the age of 4. So he also has scar tissue in his Airway which causes condition called stridor, he's got a compromised Airway as it is and a collapsed lung at 15%. Complicated issues all the way around this is the last thing he needs, but he won't go have his dark stools checked out, and I keep telling him he needs to it's a sign of internal bleeding although he doesn't see any blood it's just diarrhea like 4 times a day.

      I'm wondering what is an A and E that you mention? He hasn't been to a gastroenterologist, he needs a referral from his regular doctor he's on Medicaid he doesn't have a PCP it got messed up, we have to wait another two weeks to get into a new one, that's another story.

      He has been to the ER 8 times this month they're the ones that diagnosed him. Any advice is greatly appreciated

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    • Posted

      Hi!  A and E is the same as the ER...  (Accident and Emergency) at the hospital when you go when you have to be seen by a doctor quick smart.    I am so sorry for the red tape he's going through.  I hope he does get himself sorted very quickly.  Is it possible his regular doctor can do the test to be sent away at the office???  I know your system is very different from ours in the UK but hopefully his regular doctor can help in the interim.

      Yes.. you will find conflicting information about what to eat and what not to eat.. and what works for some doesn't work for others... the weight loss can be a really big issue.... (I didn't lose an ounce and went the other way gaining nearly 25 pounds in combination of being ill and the first set of drugs (not the steriods)...  I found it very very frustrating and I can only imagine how he's feeling right now battling not only the colitis but his other issues - it's draining.  Before the food poisoning, a few months before, I had a very bad sinus and ear infection that needed strong penicillin too to get it to shift and for myself, it took 11 months to get sorted to the point where I could see even the dimmest of lights... I've had another flare since then but at the mo - fingers crossed.  I think there is a Crohns and Colitis US organization which could be of help.  I know the one here is quite good so maybe checking them could help.....

      I really do hope he gets himself sorted very quickly and I wish him all the best.....

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  • Posted

    Hi,

    ask for mesalamine enema from doctor to get rid of blood, do some googling on enemas to familiarize yourself with them, there no big deal!  If the dr says he wants to give you suppositories instead, refuse and ask for enema...DO NOT GET cortisteroid enema, stick with mesalamine! don't take the oral prednisone they will try to prescribe you or oral mesalamine, etc..

    don't use bathroom for enema administering like most folks say to....tell spouse to stay out of room, lie on your bed, with trashcan nearby or windowsill for used enema bottle....put 1-2 pillows under the pelvis and a towel on the bed for spillage, a little extra vaseline is fine, go to sleep.....once you are able to keep one in overnight, try and keep it in, in the morning, and then put another one in....you may have to work up to thissmile do a headstand to use gravity to pull that stuff in to your intestine and not just the rectum, just walk your feet up the wall of your bedroom while on your bed. If you aren't able to hold one in even for the night or even 30 minutes, don't get discouraged, keep trying! It will happen!

    but after you are able to keep one in overnight, if you see improvements, like pink instead of red, then you are on the right track

    if you do see improvements, 1st off try not eating red meat..

    drink natural coconut water 1-2 liters per day, served cold from the fridge and then over ice, makes it sweeter tasting

    eat 2--3 coconut milk yogurts per day

    get 2 bottles of inner-eco coconut water with live probiotics from whole foods and use about one bottle per month a sip a day...if you start to run for the border or it cleans you out, then take a week off and then start back up again, eventually it will just keep you maintained

    reduce fiber intake!! no roughage!

    watch for other foods that may be irritating you and remove them from your diet, dairy, salt, cured meats, maybe gluten, 

    eat soft foods like eggs, avacados, berries, yogurt...no citrus

    If you find this all works for you then maintain the quantities for up to a year, except the bottle of inner-eco, you can back off to one every other month or maybe even one every 3 months, just listen to your body...after a year lower quantities of coconut water, and yogurt but keep them in your regular diet!

    stay vigilent, don't just think you are all better and throw caution to the wind, but after a year you will be able to eat some of the things you used to, just don't go coo coo crazysmile  I didn't eat red meat for approximately 3 years, but ground turkey thigh is good and chicken still on the menu, laid off pork for a good while, lamb seemed to be acceptable to my system.....

    good luck, god bless

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