HealingWell
Search Close Search
☰

Flaring while on a good amount of meds to start off- HELP

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/13/2010 10:29 PM (GMT 0)
Just different dispersal methods...the Pentasa does start a bit higher in the ileum, which is good if the cecum is involved.

Just a suggestion and another option for here in good ol'Canada.

q
Posted 5/13/2010 11:48 PM (GMT 0)
thanks Q, I'll ask my gi about it. i am scared to get off salofalk and try another 5 asa. i know salofalk isnt working like it used to but i'm not in a bad, bad flare so part of me thinks its working a little. i just dont want to stop salofalk just to start nother med, and for that to work less that the salofalk! soooo frustrating.
Posted 5/14/2010 1:26 PM (GMT 0)
Ok so I got the flex sig report
In short says this:

1. Were able to get into the transverse colon without sedation (he sure did OUCH)
2. Colitis is inactive with good vascular pattern
3. An occasion minute area of erythema and at least a couple of inflammatory polyps

and then it says this

" we can get up into what I think is the distal transverse colon and there is a formed solid stool".

And then he goes on to say I should continue on my current regime and if I flare do prednisone and then think about Imuran..no thanks.

So here I am today..a month after that GREAT scope with the following symptoms

now 3-4 bms a day
medium color blood in stool
thin stool
and upper colon pain.

I have started to do vsl twice aday now but i dont know how much longer I can do it for..its too expensive for me...I may just need to up the salofalk. and do the old 12 a day to hit this thing up fast. I would have no problem doing that as I used to no problem. But since joining this forum and hearing stories about pple getting bad effects like kidney problems and pancreas problems from large doses of mesalamine, now i am petrified.

Grrrrrr what to do? (sigh)
Posted 5/14/2010 1:32 PM (GMT 0)
I didnt know about the kidney and pancreas problems. I thought that if you were going to have pancreas issues with the mesa. then it wwould have happened by now since you've been on it for a while?...

I think its worth a shot.
Posted 5/14/2010 1:49 PM (GMT 0)
I dont know if its a drug sensitivity thing or length of use thing..
Posted 5/14/2010 3:01 PM (GMT 0)
Figure out all your options....try another oral and rectal 5ASA? Pentasa is an option.

Try the steroid enemas.

Where were the polyps? he didn't state. Could be one of them bleeding?

Have kidney, pancreas and liver function blood tests done regularly.

We're all in a difficult place regarding meds and the possible side effects....

You're mildly flaring.....something's working at this point...and you cannot discount what you've been through last week.

You could ask the doc for some Bentylol antispasmodic...10mg, can help with the discomfort.

q
Posted 5/14/2010 4:32 PM (GMT 0)
I think the meds I am on are working OK. I have been at a point whre I was loosely taking my orals and no rectals at all and the flare was AWFUL . This is a walk in the park compared to that.
I can bet if someone looked inside right now that the bottom would be quiet and thats why I dont really want to try steroid enemas right now..
I am having blood work done everu 3 months already. What are the tests that need to be done for pancreas and liver?
The pains are not that bad..they are uncomfortable for a few moments until I pass gas or have a bm and then they go away..sometimes none of the two happen and they just go away..but they are in the transverse and a bit to the left. I think that is the culprit...the area where the enemas just can not reach...so I may need more orals.

ETA: I dont know what Pentasa or another mesalamine tablet would do as they are all the same in terms of the active stuff working..its either mesalamine or steroids.

Posted 5/17/2010 1:20 PM (GMT 0)
Update on me after the weekend..
pretty much the same..a little less D now but still having those awful upper pains..I am not used to this as with my UC I really have never had pain like this. They are pains that make me stop what I am doing and radiate to my back..then I will either pass gas or need to have a bm.
I have not had a normal qty or formed bm in a couple weeks now andstill dark red blood in the stool. I started on two vsls late last week and started with 12 salofalk a day on saturday. Still doing my enemas nightly and one suppository in the morning. I was scheduled to start tapering the enemas but I dont think that would be a good idea at this point.
For now I think this is all I can do.
Posted 5/17/2010 2:25 PM (GMT 0)
I can understand your pains. those are what I feel. Those are the cramps that make me wory about being alone with my baby out of the house. I hope we get some relief soon :(

my appt is on june 10 with my gi where we'll discuss meds and the best way to proceed. My gi is pretty conservative when it comes to meds but I need to explain how these cramps are impacting my daily life.

Do you have an next appt booked? I'll let you know what my doc says.
Posted 5/17/2010 2:45 PM (GMT 0)
Kweeks..no I dont have an appt booked. My last appt was with a GI that I was seeing for a second opinion. I have decided NOT to go on with him though. I will stick with who I have for now.
With those pains, where did they say your inflammation was? The pain for me seems to me in the descending and transverse colom more on the left side. I am alreaady on nightly enemas so I dont think anything rectal would really help this. I have decided to start on 12 salofalk a day again . I know this is a high dose but my doctor believes it is safe to be at this dose. and it will not be forever anyway.
If I do not see some relief in a couple weeks I may book an appt. I can usually get one fairly easily as I have a relative working at the office so I am not too worried about that.
If you dont mind me asking who was your GI when you were in bfampton?
I think if you post initials I may be able to figure it out.

Mine is Dr. T. P (first name witih T, last name with P).
Posted 5/17/2010 2:52 PM (GMT 0)
Krissy, you should go see my gi from brampton!!!! he is great. i still see him when i am in town. he dx me and got me into remission. he is knowledgable.
Dr. A. B.

does that help?

my new gi here in ottawa is ok, dont have much experience with him yet BUT he is the second gi i have seen here. my first was a nightmare!!!!

my scope only showed inflammation for 25-30cm a little after the rectum. i will get the full details at my appt though. my pain is more left sided too.
Posted 5/17/2010 3:05 PM (GMT 0)
I cant figure out who it is..I probably can if I do some research but off the bat I cat. Which hospital?
My rectum was the worst after the birth of my son. I had actual ulcers that caused so much pain, bleeding, etc. I would run with the urge to go at least 40 times a day. It was awful. I was not on ANY rectal meds at all. I was not even taught about them. I wish I could have nipped it back then with what I Am using now or even the steroid enemas.
I have decided to try the 2 packs of vsl and 12 salofalk a day for a bit to see if I improve. IF I dont or if things get worse I will have to try the cortenemas ..hopefully no oral steroids.
Posted 5/17/2010 3:19 PM (GMT 0)
It's ok to post a doctor's name, so long as you aren't bashing him or her. Postive recommendations are just fine!
Posted 5/17/2010 3:22 PM (GMT 0)
ya, i havent had to use pred yet but you never know. im hoping the enemas will help me.

my gi in brampton is dr andrew bellini. he is great and i recommend him. of course you need a referral.

would you drive to bramp. from where you are?
Posted 5/17/2010 3:35 PM (GMT 0)
Oh yes I have heard of him..I THINK he may have been involved with the Humira trial as well.
I used to live in Brampton..so for me its not far at all. But I think I may just stay where I am for now..my GI is at Humber River hospital finch and 400 area.

I hope we can all find some relief. I really would like to try for another child in the months to come..so remission is imperative. I am going to start posting about that soon to get some feedback from others about getting preggo while symptoms are showng.
Posted 5/17/2010 4:13 PM (GMT 0)
maybe you'll get lucky and all your symptoms will disappear during your pregnancy?!!
I am sooo scared to get preggo again. I was in such a solid remission until pregnancy. Its very hard not to have the two intertwined (pregnancy and UC). I just want to get back to my pre pregnancy state so bad. If I ever get there I dont know when I feel comfortable enough to get pregnant again. I do want another and so does my husband but I am just so worried that I will flare even worse!
Are you scared?
Posted 5/17/2010 5:07 PM (GMT 0)
Yes I am scared.
But I did not flare during my pregnancy. It started about 6 or 7 weeks after I gave birth. It got very bad VERY fast. By week 8 I was already on 40mg prednisone.
My pregnancy was great..no UC at all..I had a few days of symptoms right at the beggining but they went away very quick when I started to take a few salofalk a day..things were great..
Up to then UC was always mild anway..I had only had one flare and it was nothing compared to the one after my son was born. It was all downhill from there.
I am told to try to get pregnant when I feel good and in remission. Now I kinda wish I would have since this past Feb..cause thats when things really turned around for me. now I feel like I am going in the opposite direction again.
To stay like this would not be bad but to have a severe flare during pregnancy would be awful.

I have just gotten off the pill so I need to be really careful that I dont get pregnant any time soon.

Stay away hubby!! ;) lol
✚ New Topic ✚ Reply
12