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a little update…. UC proctitis

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Ulcerative Colitis
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Posted 2/19/2018 1:14 PM (GMT 0)
Hey there, i just wanted to follow up on a post i did maybe a month ago… i was quite frantic and wanting answers and you guys were all so kind.

I’m currently 32 weeks preg, i had been having some bleeding and mucus since 20 weeks, maybe a week or two of loose bm’s but not much else… fast forward to today…

I’ve had a flexi sig (will now be having a full colonoscopy once babies here)
Flexi sig showed inflammation in the first 5cm of the rectum (proctitis) as suspected, and biopsy results today confirmed it is UC. Gi feels confident it was all lower end, but wouldn’t be right not to have a good old look around once i can.

So feeling better knowing i have a diagnoses, and feeling menatlly (slightly smile calmer knowing they will now give me some treatment. The IBD nurse is going to call me this week to have a chat and check in on me etc.

So thats that really… didn’t want to join the club.. but looks like i’m here.

Any words of wisdom will always be welcome. xx
Posted 2/19/2018 1:31 PM (GMT 0)
I’m glad you finally have a diagnosis! It’s fristrating not knowing what’s gling on. The meds for UC can be great and they will probably put you on a really mild one first like sulfa it mesalamine. Just remember to take your medications, even if you feel fine you could still have underlying inflammation. A lot of people have the initial flare and then never get a flare again or their symptoms stay very mild and their flares only last a short duration! Some women also get bad flares after pregnancy so I would watch out for that (not to scare you) but it can always be brought down by medications! Hope all goes well with the baby!! smile
Posted 2/19/2018 1:45 PM (GMT 0)
So frustrating not knowing whats going on!! It was actually making me feel crazy… more than seeing blood on my poop haha..

Yep thats what she said, she said they would start me low… maybe oral and suppositories.. not sure yet, and basically take it from their.. she was very nice, and weirdly positive haha. But it felt good to know whats what.

I wish it will always stay this mild… but we will see smile
I’ll just take these good days for what they are and look after myself as best i can and hope for the best.

If i’m honest, my biggest worry is knowing that my i may pass this on to my kids sad that truly upsets me.

I have heard about the after birth flare …I’d rather be temporarily scared and given some warnings ha.
So i will be on the look out big time. Plus i have some internal hemmies that i’m sure will play up after birth, so it’s not going to be a pretty picture down there … but never mind.
Hopefully i will be in good contact with the IBD team at the hospital by then so i’ll take all the advice and words of wisdom i can. I will 100% take any meds they give me, i am a stickler for the rules, i will even pop them in my hospital bag incase i have to stay over! Thanks for well wishes, i hope you are well too x
Posted 2/19/2018 2:41 PM (GMT 0)
At least now you know. Most of all try not to worry, you are on the right path and know that Ulcerative Proctitis has the best prognosis of all extents/types of UC. Many moms here have had happy and healthy babies despite having UC. We've had a number of posters over the years get diagnosed with UC or had their UC flareup around a pregnancy. Lots of hormonal and other changes within the body at that time.

Did they prescribe you any medications yet? I would expect some mesalamine-based suppositories like Canasa and/or a steroid suppository.

Ask us anything.
Posted 2/19/2018 2:50 PM (GMT 0)
The odds of passing UC onto a child are quite low. Especially in cases of UC (Crohn's disease has higher odds) and especially if only one parent has an IBD. The highest odds are actually among siblings, if you have any brothers/sisters (a risk of 0.5–1% for a sibling of a UC patient) than they are much more likely to get an IBD than your child would be. I'd try not to worry and just focus on healing!
Posted 2/19/2018 3:38 PM (GMT 0)
Thank you Ipoop, you calmed my nerves last time smile and i honestly am so grateful!!
I will try not to worry. I think once the baby is here, and she and i are separate, i will feel more in “control".

Yes they should be getting me some meds for the end of the week i hope. Just waiting for the IBD nurses to call me to discuss it.
I think she mentioned Asa something?? Cant remember which, but mesalamine sounds familiar. she did say we would probably start with suppositories, then progress to oral as well after birth, as long as my current flare stays as it is.
I think for now she said it wouldn’t be steroid based. But again, i’m not sure if thats because of my current situation.

xx
Posted 2/19/2018 3:52 PM (GMT 0)
They likely said 5-ASA or Asacol. 5-ASA and Mesalamine are the same thing. It's a 90% topical anti-inflammatory medication that's the first level of treatment for UC patients, it's best when given both orally (i.e., Asacol, Lialda, Delzicol, Apriso) and given in rectal route (in a Canasa suppository, Rowasa enema, or foam format).

A steroid suppository for now is a good way to get quick relief.
Posted 2/19/2018 4:05 PM (GMT 0)
yes thats it, i thought it had a number attached to it but wasn’t sure. She did say that she likes to treat both ends regardless, so i’m glad thats sounds like the right thing to do.

Would it be because i’m having normal-ish Bm’s 1-2 times a day (although with some blood and mucus most times) but with no pain that she wouldn’t do steroids right now?

I’m in the Uk and i basically paid to see this lady because our waiting list was very very long, she did my flexi sig, and follow up consulataion today.
She is a colon specialist, but is now handing me over to the IBD specialists at the local hospital now we know what we are dealing with.
She also works with them daily when she isn’t doing private work. But she did say that although she has a keen interest in IBD amongst other things, it isn’t her only focus. So she will let the other GI’s decide on what action to take with regards to meds now they have my actual results. I appreciated her honesty.
Posted 2/19/2018 4:53 PM (GMT 0)
Steroids are only appropriate when your UC symptoms are at the severe end of the spectrum. Your symptoms are mild if you're 1-2 a day with some blood and mucus. 5-ASA is great for mild symptoms, in the UK there might be different names: mezavant/pentasa/salofalk but it's all the same thing. We have a number of UK posters who can speak more directly to the NHS and working through them.
Posted 2/19/2018 5:07 PM (GMT 0)
Thanks again smile so glad i found this place. I’m sure i’ll have many more questions once my brain has begun to process all the new information x
Posted 2/19/2018 5:44 PM (GMT 0)
Hi there! Welcome to the club. 😉 Just sharing I had a very healthy pregnancy whilst taking pentasa and asacol. And my son is absolutely healthy. Sure you will be great! And congratulations on your little girl. How exciting!!!
Posted 2/19/2018 6:31 PM (GMT 0)
I like your doctor already!!! Sounds as though you're in good hands....
The more info you know helps your knowledge base. Regarding passing it on...you have no control over it at this point or in the future genetic health of your daughter. Awareness is most important.

Thanks for the update!

q
Posted 2/19/2018 6:56 PM (GMT 0)
Sorebutt, thank you for sharing that, it is nice to hear, its been a bit of a whirlwind and i don’t think I’ve taken any time to enjoy this pregnancy at all really as this has been at the front of my mind for a lot of the time.

How were you during and after pregnancy…. i know everyones different, but good to hear any stories really. x

Quincy, she really is a lovely lady, she some how managed to make me feel rather positive about it all, with out actually saying you will 100% be fine… haha The other lady docs she’s handing me over to sound great as well, so hopefully they will follow on with her bedside manner and overall attitude towards the whole thing.

Thanks again for this support base xx

Post Edited (kloz31) : 2/19/2018 12:01:32 PM (GMT-7)

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