Day one without cortenema ...so upset advice needed

I weaned off Cort enemas. Used half Cort and half Rowasa for about a week . Then next week a little less of the Cort. about 3 weeks I was using just generic Rowasa. Worked well. No blood.i just kept cutting the amount . I used both at the same time.

Blood always makes me crazy too! Got rid of the blood. Still have watery stools with gas and urgency. Takes forever to go away if ever.
Maybe the blood is coming from the rectum.i use canasa in the Am that took care of that end. Took a while to find what works. Crap shoot!

Can't seem to rid myself of the watery stools, urgency/ gas. What I heard that's still part of a flare. I'm a lot better then before. I'm also on Humira. That calmed things down. I guess this has been going on since last Sept.
The rectal meds have helped a lot. Trying to have patience. Not an easy task!

B,

Thanks for the post...it's so frustrating!

How did you do last night? I hope better than i did...

Now that's an interesting thing...( I love this place) no I actually don't pull out slowly ..I try to squeeze to kind of get it further back?

Since it seems like its coming from the rectal area ( poop has no blood and is formed) you may be right ....

So what do I do, try to leave some liquid in to pool at the end?

If it is coming from the end will that help?

So what is the benefit of a steroid supp instead of the steroid enema? Like how is that a taper? Is it less medication ?

Maybe thats a better way to taper ?


No it's Brian bosworth of the IBD center at Cornell.. My husband saw a fantastic surgeon there for his colon cancer so that's where I want to start ..


Do unsee dr present? I heard he was amamzing too!

I don't have the appt until oct but I'm pretty sure I can ask a colleague to see of imcanfet seen sooner..not going to play that card unless this flare doesn't get better.

So are you using the anucort and rowasa?

I'm thinking I will uses the rest of my rowasa half every night w the cortenema. I have 2 rowasa left so that would get me until we'd them I will just do canasa three times a day until I see the rectal surgeon . ( 27th)

Unless of course my GI takes charge tomorrow and does a look see himself...he's never done that in the 6 years I've been with him but who knows . After I go crazy on him to,or row he may wake up!


How many VSL do you take?

Once I weaned off the cort enemas I felt much better. They were interfering with my sleep and I was sweating a lot. Still have a whole sh--t load of them if needed. Good luck with your weaning.

LOL, flax isn't the best omega from what I read...and while it'll give you a "nice shiney coat"...not all can tolerate it for various reasons.


All great options suggested Faithmac and hateuc!!

you now have in your arsenal. Try not to get too frustrated or in any way believe it's something you did. You're believing that this should be fixed in a limited amount of time given by the prescription of the steroid enemas. It doesn't work that way..the doc should have given you a refill option.

My thought on the blood is...could it be a fissure?

How do you feel after the Metamucil?

q

Thanks guys!

I don't think it's a fissure but how else would I know? The surgeon just looked in there about a week or do ago, wouldn't he have seen something?

I only took 2 today so far... I didn't want to start big guns bec then I wouldn't know what was bothering me if I has a symptom...was it from thentapemthenrowasnornthe Metamucil...So I started with 2 today will do another 2 tomorrow them build from there once I monitor the stool consistency etc....


I want to start on an oral Asa along w the canasa...but I know I should let the gi do it. I'm anxious to hear what he has to say tomorrow....

So true about it playing w your head....so frustrating...

And yes quincy, I definetly wanted this to be something fixed in a limited time or even just some sort of time frame...my mistake for sure...I have to try to change my mind set and think of it day today and not look too far ahead!

Haha. Sorry...one of my kids changed some setting on my iPad...I think it was a crazy spell check word!

What I was saying is that I was planning to go slowly with the Metamucil...this way if I have a reaction, gas, pain, etc...I will know its from the metamucil, not from the rowasa increase or cort
Enema taper.

Yes today I'm starting 2 more caps...had been doing 2 caps at breakfast...today will add 2 more at lunch for a few days and see how that goes.

I'm not thinking about the big guns for this flare...what my main concern today for the GI is that ulcer in the terminal ileum..

That's what's bothering me...I don't understand why he isn't addressing it?

I looked at my very first colonoscopy in 2006 with a different GI...he saw 4 ulcers in the TI...He drew a Prometheus blood test and it resulted in " indeterminate colitis"

Again , his treatment was canasa supps and if that didn't work he gave me a script for asacol... Never needed it because I improved w just the supps...

I know it sounds crazy but I need to get to some sort of answer to this stuff...not for me but my kids...

My husband was diagnosed w colon cancer at age 40... The oncologists at Sloan Kettering have my kids starting colonoscopy at age 30 and were very clear that if there were any other stomach issues with me or him we needed to make sure we knew what they were etc...especially if they increase the risk of CC...

So that's really what's behind all my craziness this time..plus some of my kids show some " stomach" issues already. : (




Ok...going to GI this afternoon after work...will update when i get back!


By the way, 1/2 cortenema and 1/2 rowasa last night...let rowasa slip out slowly...trying to coat the rectal area...

2 formed brown no blood, then about 5 min later 2 more same...just little red flakes like red pepper flakes in the toilet....I, assuming that is like scanning?


Can not beleive the things that I am actually looking at these days !


Anyway thanks again to all of you for the suggestions and most of all the support... Makes this craziness a lot less scary!

Having a plan is always a good thing. As long as there's not too much chaos from one thing to another or too many things at once.

The basics first, the elimination second, the additions third, etc.

Good process with the fibre.

I don't think there are scabs that form in the colon, but there would be areas where blood droplets can form and come out as they are surrounded by mucus or medication from the supps or enemas. Unless you have some blood from a fissure around the anus that somewhat dried and came out the last time.

I totally get the urgency regarding answers and the concerns regarding your kids and the cc. Testing/c scopes is a necessity on their part. The knowledge they now have is more than denial or not knowing,

It's easier with the knowledge to lessen the anxiety and mental frustration/anger, etc.
I think some doctors see our anguish and don't necessarily explain in depth..just say, it's OK or nothing to worry about at this point..etc. With properly listed questions comes the answers since the doc knows what specifics to answer.

Looking forward to hearing about your appt.

q

Hey guys!

So I saw my original GI..had tons of questions...and this is the recap


So I told him what has been happening since the colonoscopy...he knew about the bout of diarrhea and stomach pain a month after the colonoscopy , but didn't know that the bleeding rectal pain etc started .

Told him about the rectal surgeon and what I'm doing now.
Of course he agreed...said the " plan" was perfect...and since I'm feeling better to continue with the taper/rowasa alternate...

Said to cont w canasa as well...If stomach pains don't cont to improve he will send me for ct scan.

He showed me the colonoscopy and I saw the one small ulcer in the TI..showed him a colonoscopy picture from 2006 where there were apparently more in the TI...

He said he was not impressed w the ulcers and that he thought it could be from NSAIDS ...

Said my proctitis was flat and smooth more like UC than Chron's

Showed me the pics from 2010 and the severe proctitis..vs the mild -moderate proctitis from 2 months ago. What a difference!

He said that he felt more inclined that I had UC based on the rectal involvement ...chrons has rectal sparring...the 4 colonoscopies that showed the flat smooth ulcers vs the deep ones of chrons , as well as the symptoms or lack of for the most part.

He also said I had a normal small bowel series in 2006 which didn't show any narrowing or abnormalities of the small intestines...again something that you may see with chrons..( not ulcers but you would see some narrowing etc..)

Finally apparently Prometheus has a new blood test to tell with some certainty if it's UC vs chrons..so I'm going tomorrow to have that drawn ....

Also agreed that my daughter should be seen..she's 17 And has always had stomach pains after eating , bloating and diarrhea... Just to run some tests etc...


So that's basically it...told me to see the rectal surgeon as planned next week for him to look and see if things are improving...

And if not he said to call him to discuss different medications.

So all in all it was a good meeting..I know I complain about him but he really does listen...I just don't think he is very aggressive...II always feel like I'm the one suggesting the tests, the meds etc...

But ...my appointment with the IBD guy in the city isn't until oct so he's the best I have right now. :)

Today was a pretty good day...had a squirt in the mid afternoon but this time it was pretty much all white drops...so Quincy...once again you are right..I think it's the canasa..

Took 2 more Metamucil today w lunch..haven't really been eating but will start to add some food..just nervous about d returning.

So that s the day!,


How are you all feeling?

Hope it was a good day free from poop issues. :)

Hahahaha...why do I feel better knowing you " guide" your GI too?
I wonder why that is?

But I'm glad you started yourself on cortifoam! I'm sure though, that if we were way off they would say something,,,,I sure hope so.

Yeah...I mean, I know I have this ulcer on the TI, but I just can't beleive it is chrons..I guess I will know soon enough..I am pretty scars though...chrons just goes to a different place in my mind.

Yea..it's my kids that really kill me...thinking about their stomach history, genetically, scares me..but I'm glad we have all this knowledge...my poor kids will think colonoscopies are nothing!

I kind of think it's the canasa...too...I guess it's the supps? It's white liquid, not blood so that's good.


So you're trying to get to just rowasa only? How are you feeling? No blood right.?

How long has this flare been going on?


Yes we discussed oral..he said wait til enema and supps are done then we can talk...

Thanks for thinking of me...


Have a good night...

J