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biopsies results update….

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Ulcerative Colitis
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Posted 6/29/2018 8:39 PM (GMT 0)
Just wrote a massive long post and it deleted itself rolleyes

so today i had my first colonoscopy

only had flexi sig at diagnoses due to being pregnant.

first scope revealed proctitis first few cm, i’ve been taking 1 asacol suppository nightly since then with good results.

Stupidly today i thought they might say well done, colon looks ok, cry


I will add that i am still “well” 1-2 bms per day, no blood etc. Generally feeling normal.

I got discharged with a letter saying ‘mild colitis seen’

So being impatient i messaged my nurse

She replied

Hi kate

Yes they said the inflammation maybe all the way round, but biopsies will confirm this. I have read your report and i am not concerned with the results. Please do not worry. I will let you know as soon as i see them.

ARGHHHHHH


why do they need to wait? can't they see if the inflammation is all the way round??

All the way round is bad isn’t it? Why isn’t she worried?

If its all the way round why are my symptoms the same?? I’m so confused….

help!!!





confused confused confused idea



so i had a small update from my IBD nurse today, who is slowly getting on my last nerve…

Biopsies have come back, they confirm what they saw on the camera test. “patchy” inflammation.

I am being given oral Mesalazine, as well as continuing my suppositories.

So i may be new to all this within reason, but i knew to ask whether my biopsies could confirm a UC diagnoses as i’m aware “patchy” inflammation is more commonly associated with Crohns.

She has replied with, the inflammation is not bad, and i am not worried, it is throughout the large intestine, it could have always been this way, but this was your first full camera ( i don’t believe it was always this way, my flexi sig in Feb went up 30cm, and only saw 6cm of inflammation) (hence the proctitis diagnoses)
As it is patchy disease it maybe that it is crohns instead of colitis, but i will discuss this further with the DR when she returns from leave next week…

So brilliant, i may now have Crohns, i honestly have got to laugh at this.

What a bloody joke!!

I still might add that i have not got one friggin symptom right now.. nothing!! Not one thing, it’s like someones playing a prank on me.

I have read that 5asa aren’t particularly great at treating crohns, i know this might not be the right place to ask now, but any advice on moving forward?

Thanks again

Kate x
Posted 6/29/2018 8:48 PM (GMT 0)
First, do not panic and over analyze until the biopsies get back. I say this as the prep-itself can cause very mild redness, even patchiness due to how harsh it is. I say this, as this happened to me once before. I had a flex-sig and my doctor said "Well either you are in a remission and the prep reddened things or you have very mild inflammation. We'll wait a couple days and see what the biopsy results are." The biopsies confirmed superficial, shallow surface reddening from the prep, and no active UC inflammation was present. I was given a deep/quiescent/histological remission by my doctor.
Posted 6/29/2018 9:12 PM (GMT 0)
Hey John.

The biopsies are back, she said they confirm the patchy inflammation that was seen on the camera. But didn’t say anything else.

Trying not to worry too much. More annoyed at the moment sad

If it was the prep, the biopsies wouldn’t have confirmed inflammation would they?
Posted 6/30/2018 1:34 AM (GMT 0)
If it was the prep, the biopsies wouldn’t have confirmed inflammation would they?

Correct. There's Indeterminate-colitis, Crohn's-colitis (that is crohn's confined to the large intestine), and crohn's disease. Was the ileum involved (a typical crohn's disease thing)? Was there any cobblestoning (a typical crohn's disease thing)? Or any aphthous ulcers (you guessed it a crohn's thing)?
Posted 6/30/2018 3:21 AM (GMT 0)
Try to just be happy you have no symptoms. Im sorry though, I understand the anxiety surrounding all of this.
Posted 6/30/2018 4:22 AM (GMT 0)
I am sorry you're dealing with this stress. You may want to try enemas instead of supps. Patchy inflammation is always scary to hear, because it makes you think crohn's, but you're treating with rectals, and that in itself can cause things to look "patchy". Where was it patchy, throughout? If it was just where the supps reach, it may be that the supps treated some areas and not the others. Take it easy, get a copy of your pathology report and figure out where to go from there.
Posted 6/30/2018 8:06 PM (GMT 0)
Thank you guys for the support!

I’m waiting for my GI to return from leave. Hopefully she’ll be able to fill me in a bit more as to what was actually seen rather than a sketchy email from my IBD nurse.

What will be will be I guess sad just the waiting around as per usual that gets me down more than anything else.

Like Sara said, for now I’ll just try to hang on to my symptom free life.

Will update once I know more x
Posted 6/30/2018 9:31 PM (GMT 0)
I’m sorry to hear you have to deal with this I hope that everything is ok . I’m happy to hear you have 0 symptoms . If I may just ask you a question I’m new to this forum I’m dealing with Proctitis issue myself you are symptom free that Is amazing , what made the G I doctor want to give you a flexi sig? Or were you feeling symptoms before diagnosis? If so what kind ? . I’m sorry idk if these questions are aloud on your post I’m just feeling really scared and have a lot of anxiety right now .
Posted 7/1/2018 9:37 AM (GMT 0)
Hey borbor I basically had a flexi sig in feb because I was bleeding with my bms and I knew it wasn’t just from hemmies. That’s when I was first diagnosed with UC proctitis. I got given suppositories that appeared to work great and I stopped bleeding after 3-4 days.
At the time I was pregnant, quite heavily. So no one wanted to do a full camera. Hence why I’ve just had that done recently now my babies here. smile

What problems are you having? What got you diagnosed? Any diagnoses brings on a bout of anxiety sadly, but you will feel better. It’s only been a few months for myself and even this latest curve ball hasn’t thrown me off as much as my initial diagnoses.

What’s your plan?

Post Edited (kloz31) : 7/1/2018 1:23:50 PM (GMT-6)

Posted 7/1/2018 6:40 PM (GMT 0)
When did you jave the c-scope?

Biopsies dont state patchy inflammation.

The nurse is an idiot and she is talking totally without any knowledge.

When do you see yiur GI? make an appointment with her.

q
Posted 7/1/2018 7:22 PM (GMT 0)
Hey heather smile

Her words by email were, the biopsies confirm what we saw on the camera, patchy inflammation throughout.

I’m picking up my prescription tomorrow to start oral meds regardless.

I’m hoping someone contacts me this week. I’ve asked for a copy of the report as well. But seems no ones around at weekends so me talking to her on Friday wasn’t a great option.

Will update ASAP

Hope you’re well x
Posted 7/1/2018 9:04 PM (GMT 0)

kloz31 said...
Hey borbor I basically had a flexi sig in feb because I was bleeding with my bms and I knew it wasn’t just from hemmies. That’s when I was first diagnosed with UC proctitis. I got given suppositories that appeared to work great and I stopped bleeding after 3-4 days.
At the time I was pregnant, quite heavily. So no one wanted to do a full camera. Hence why I’ve just had that done recently now my babies here. smile

What problems are you having? What got you diagnosed? Any diagnoses brings on a bout of anxiety sadly, but you will feel better. It’s only been a few months for myself and even this latest curve ball hasn’t thrown me off as much as my initial diagnoses.

What’s your plan?



Congratulations on your babys! what did you have boy or girl? i myself just had a baby a few months ago my second 1 smile Thank you for your reply i hope everything works out with Ur latest curve ball keep us updated ,

im in the process of getting diagnosed right now my colonoscopy is in 2 weeks The symptoms ive been feeling are occasional diarrhea after i eat but usually solid stool depending on what i eat, occasional constipation ,excessive gas , stomach rumbling , occasional stomach spasm that feel like somebody is pinching my colon last about 1 second this doesn't happen to often though, i also have felt it in my rectum a total of 8 times or so these past few months its not really painful it just feels weird (I have gotten my rectum checked for blood in stool multiple times came back no blood), i have only really felt pain about 2 times lower left abdomen for a few seconds. and undigested fiber food in stool a couple of times. there are moments in the day were i feel completely fine like i did before my digestive issues my first G I doctor gave me blood work an cat scan came back normal CT showed no inflammation so he said you have no blood in stool no extreme urgency and told me i have IBS an sent me on my way. i met with another G I as soon as i told him my symptoms he instantly said " you most likley have ulceractive proctitis " and scheduled me for a colonoscopy in 2 weeks

right away he said that i need to prepare myself for whats about to happen because my life is about to change i will have to deal with this for the rest of my life and i will need medication every day. i asked him why i have not seen blood and he said it will come eventually i also asked if there were any diet change i can make to make sure that the blood doesn't come and he says diet has nothing to do with it it just happens . so since then ive had way more stress an much more anxiety waiting for this colonoscopy sad my big fear is that 1 day i get too sick an cant take care of my children, my children are my everything sad sorry for my long story
Posted 7/2/2018 10:22 AM (GMT 0)
Sounds like you have a cheery GI... I know he’s being realistic but that’s not the greatest way to start someone’s chronic illness off for them. Like a letter from doomsday!!
I would say to just try to stay calm. Of course it needs to be taken seriously. But you may have many years in remission. Or you might not have it at all. There could be quite a few things causing your issues.
I have two daughters and my biggest fear is not being there for them. So being pro active and trying to take care of yourself as much as physically possible is very important. Don’t worry until you have something to worry about.
He can’t tell you you have ulcerative proctitis without seeing inside you. And your other results have come back good. So theirs still hope xx
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