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Back to where I was last year.. UGH

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Ulcerative Colitis
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Posted 6/16/2010 2:58 AM (GMT 0)
Hi everyone

Well, I'm back to where I was this time last year.. Having only 3 or so Bm's during the day, but they are preceded with gas and bloody drips, then blood on the stool, ending up with bloody toilet paper... UGH..

I finally got a hold of my GI's office yesterday and he JUST left for a 2 week vacation~!! SO, I talked to another GI in the office and had to go over my whole story with him.. He was so nice at least and was very patient with my explaining everything I've been through in the last year and a half.

He is advising me to go back on Nightly Rowasa enema's.. I can pick up my 'scrip tomorrow... We're hoping that since I've been off all medications for the last few months, that they just might work again. We're going to give it 2 or 3 weeks to see about any results and if that doesn't work, then I am going to try either another infusion of Remicade or will try Humira... I told him that I don't want to do Prednisone again.. that stuff is EVILLLLLLLLLLLLLLLLLLLL....

We're pretty sure that this major cold I got probably is what set off this flare.. I was really sick with this one, it lasted almost 3 weeks and I even today I still feel a very slight scratch in my throat/nasal areas...

As far as my energy and all that, I'm feeling actually pretty good now after the last couple of weeks.. If I didn't have all this bleeding, I'd swear I was still in remission... I had a pretty good day today and even went on a short horseback ride with my buddy. I don't have any more nausea really, it was only for a couple of days so I'm thinking I had a bug of some kind, since other people around my town have been getting something similar..

Bottom line is I feel that my moving out, getting a cold, catching some sort of intestinal bug all within a 3 week period was just too much for my colon to handle... So, I'll start my Rowasa again tomorrow and PRAY that it works.... I really don't want to do Remicade again or have to try Humira again... I'm just so afraid I'll get all that MS type reaction again..

So time will tell.. I'm doing better now mentally.. it's always the first time when I see blood after being in any kind of remission.. I sorta freak out and have a major anxiety attack and just am not myself until I get it all absorbed...

Thanks for being here everyone :)
Posted 6/16/2010 4:32 AM (GMT 0)
Sorry you're feeling stressed. The best thing is probably to take it easy and use the Rowasa as your doctor suggests. With any luck, that will get you back on track and past all of this instability.
Posted 6/16/2010 5:25 AM (GMT 0)
Hope the Rowasa helps....while you're at it, you might ask for the Asacol aslwell....??????

why in the world would you even consider the Remi....don't you somewhere in your mind believe that it's a risk that can go really wrong?

Susie....I don't get it.

quincy
Posted 6/16/2010 3:16 PM (GMT 0)
Hi Quincy...

I guess listening to my GI he makes it seem not quite as scary.., although he himself has concerns.. The neurologist cleared me of having MS, so we just don't know... I do feel that there is a risk, I guess I need to weigh it out either just having my colon removed which would be a sure thing vs. the risk of trying Remicade one more time and seeing what happens... Maybe Humira would be a better bet, since it's made with Human Protein instead of Mouse protein like Remicade....

I just don't know.. and yes, I am considering it if the Rowasa doesn't work...., what would you suggest I do? Maybe you have better suggestion :) I don't want to take Prednisone again, it makes me FAT and miserable and doesn't really work for me anyhow, Oral 5ASA's don't really work for me.. If I don't give Remicade or Humira one last try, I might as well book myself in for surgery....

I'm just going to try the Rowasa for a few weeks and then if that doesn't work, I'll cross that bridge when I get there.... :(
Posted 6/16/2010 3:52 PM (GMT 0)
While Remicade is a somewhat scary medicine one should note that inflammation is connected to increased risk cancer, so you are never really doing yourself a favor by being in a constant inflamed state for long periods.

Not to mention how easy it is for us to get used to always feeling sick and accepting that one always says no to events due to being tired or because of bathroom access. I think it is always worth it to try as hard as one can to be healthy to get our lives back.
Posted 6/16/2010 5:52 PM (GMT 0)
Susie....of the two, maybe the Humira is the better bet considering....but even if you've been cleared of MS...what are the lesions? Is there a connection as well considering it still suppresses the immune system?

You could also consider Entocort and steroid enemas added to the mix, plus...I'd still do the Asacol or whatever it was that you were on, but a low dosage.

Are you still using probiotics? maybe add a fibre supplement....

q
Posted 6/17/2010 4:38 AM (GMT 0)
OMG Q... I never even gave Entocort Enema's a thought!!!! I'm gonna call my GI's office tomorrow and see if I can get those in addition to Rowasa.... maybe start out on the EC and switch to Rowasa after a few weeks? I have never used it before so I don't know the protocol, but I'm glad you mentioned that :)

And.. ya.. about those lesions.. I know.. I'm a bit concerned about them too... Not really sure what they are and I've got to get those reports out again and go over them, getting the information fresh in my mind again..

I am still on Culturelle, my good ol' probiotic I've been on for a few years now.. taking double the dosage for quite a while now... Plus, I got a line on another place today.. I'm renting a room right now from a lady and her two teenage daughters.. It's ok, but a little crazy from time to time... Anyhoooo, I found out today that someone I know has a granny house for rent and it would only be 100 dollars a month more than I'm paying now and I'd have my OWN place with a little covered back porch and a small garden area :)

I'm going to look at it on Friday and hopefully I will be able to move there, maybe at the end of this month... It would give me WAY more serenety and that's exactly what I need right now.

Thanks for the mention of the Entocort.. I'm definately gonna call my GI's office tomorrow and see if I can get a scrip for that too
Posted 6/17/2010 6:25 AM (GMT 0)
I'm also meaning the Entocort oral as well as rectal if the 5ASA oral doesn't work and you're having symptoms high enough where the enemas can't reach. You should still try the oral 5ASA initially and not wait too long before adding it in.

Lesions in the brain....plaque? I think there are a few possibilities.....but you already had problem with your extremities and movement which led the doc to check you in the first place. So, it wasn't the Remi initially...it was your symptoms that caused you to dig deeper?

Nice you have a lead on another more independent place to live.

Where you keep your horse?

q
Posted 6/17/2010 6:06 PM (GMT 0)
Susie, curious, what's wrong with Imuran?

Also, ever try a sulfa? You never know.
Posted 6/18/2010 12:57 AM (GMT 0)
Hey ElephantPipe and Q :)

I never wanted to try Imuran last year because originally I was so sick I didn't want to wait the several weeks it took to kick in and my GI was agreeing with that one, so we went right to Remicade once the Pred failed. I'm not so sure this time I'm against it, but I'll be able to discuss that with him when he comes back from Vacation in another week... Also, I've never tried a sulfa... not even sure what that is.. lol...

And Q, Yes, I'm very excited about possibly getting into my own little place!!! I'm probably going to have a look at it tomorrow and I am on pins and needles! Ok, as far as the med questions, I have already tried Entocort oral and it didn't make a bit of difference in my symptoms... My GI said it's mostly used for Crohn's disease because it mostly treats from the Ileum up the ascending colon and part of the transverse colon, not all the way over to the left side. But the Entocort Enemas sound very promising to me~! And yes, my brain has plaques, (which are basically lesions, just a different name) and it was the numbness and tingling that happened 3 weeks after the Remi that got me into my doctors office to check for MS. I have had MS type symptoms in the past but they were VERRRRRY mild, mild enough where they couldn't justify even giving me a spinal tap which they did this last time when I had my latest problems. But, I've been cleared of MS... so I'll wait and see what my Gi recommends my doing when he get's back from vacation.

Starting the Rowasa tonight so I'm keeping my finger's crossed!
Posted 6/18/2010 2:22 AM (GMT 0)
Hi Susie

I don't know if you remember me, I'm here sometimes and sometimes I'm not, but I've always read your posts and know your story.

Awesome news about your potential new place, sounds like it would be a perfect peaceful spot for you!!

And I hope the Rowasa works for you!  And as far as oral 5 ASA, I really noticed a difference when I took my Asacol in 2 doses (morning and night) as opposed to 3 times a day, I don't know why but it made a difference for me.

I have the steroid enemas in the back of my mind for my next line of defense if the Rowasa should fail me...I like knowing I can try that before oral steroids! 

Here's hope hope hoping the Rowasa work for you!!

Feel better!

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