HealingWell
Search Close Search
☰

what do i do

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/2/2012 4:57 AM (GMT 0)
i am on so many medications with none of them ever giving me remission. look below. there are still some things that i havent tried yet and i am not getting surgery because 1) i would rather be dead then have to wear a pouch 2) jpouch still makes you go upwards of 6 times a day 3) not 100% positive i dont have chrons. what do i do? will i ever get into remission? i am having usually 2-3 skinny BMs a day. most of the time when i have to go i cant hold it for more than a few minutes. i really just dont know what to do next.
Posted 1/2/2012 5:36 AM (GMT 0)
I couldnt metabolize 6mp properly. Was put on allopurinol which is used to treat gout. It flips the way I metabolize 6mp and was the only thing that got me off pred and into remission. There are blood tests you can have done to see how you metabolize the 6mp. On allopurinol my dose of 6 mp is now halved but I need regular blood tests to check my wcc is ok. A lot of Dr's aren't comfortable with this therapy though. My GI here in Australia specializes in IBD and is currently doing clinical trials on the therapeutic doses so I feel quite comfortable working with him.
The inflammation causes the urgency so if you can control that, in time you should start to feel 'normal' again.
Posted 1/2/2012 6:23 AM (GMT 0)
did u try canasa suppository I have been using it lately I do feel better with the urgency but it is still there. also going gluten free helped with reducing my urgency. which probtics are u using? I use the VSL3 it seems to be helping me. of course the urgency is the last symptom to go with UC.
***taking canasa is very specific, I have to take it when my bowel is evacuated after 3 trips to bathroom. then take it b4 it starts to melt and lay on my side for 1 hr,( otherwise it comes out and makes u go to the bathroom more. )****if taken properly then it reduces my stomach discomfort and urgency. stay positive and determined, I know it is hard. sending u good vibes!
Posted 1/2/2012 6:39 AM (GMT 0)
Cobes I'm in Australia too. i'd love to know who your GI is
Posted 1/2/2012 10:32 AM (GMT 0)
Hi s_morgana
My GI is in melbourne. Actually I'm currently seeing two who are working together on the study which is great since two heads are better than one. They both work at the IBD clinic in the Alfred hospital although one also consults in Brighton. Miles Sparrow is the head investigator (based at Brighton) and I believe he did a lot of study over in the States a few years back. The other is Antony Friedman who I see mostly. They are both caring doctors and young enough to be around for a while (late 30's I guess?).
Hope this info is useful and that maybe you too live in Melbourne to give them a try if you like.
Posted 1/2/2012 1:11 PM (GMT 0)
Mikey

Your list of current meds and diet sounds like you're doing the right things IMO. Urgency sounds like your main complaint and that is the last symptom to go away for many people.

Let me ask a couple questions:
-is your enema use every night? And are you using the technique to get some enema in the lowest area possible? Retaining all night?
-about your SCD protocol--eating any dairy such as SCD yogurt? Any caffeine of any type?

It took me a looong time to get results and my improvement is 95% from diet. Pure SCD had too many food types my gut could not handle until 1 and even 2 years later. Your intolerances may be different than mine but I'm suggesting you don't go "by the SCD bible". That means perhaps removing a food to see if there is improvement (rarely can you add a food).
I still cannot handle "wet" dairy like homemade yogurt but can now have some types of fruit (not all types). Life does get better but in my case very slowly.

I will also suggest eliminating all supplements including vitamins and fish oil, just for a week or 2 to see if there is something in them causing a reaction. Eating only non-starch veggies and good protein for a week or two will not be a bad thing and could give you some clues.

Best wishes. It does take time for some of us to get better.
Posted 1/2/2012 3:10 PM (GMT 0)
Ok this is just my opinion but 2-3 bm's a day doesn't sound bad to me. I have that some days and I consider myself in remission. I also have always had the need to go within a few mins. I wonder if its just because we have worn out the muscles down there and just can't hold it in. Just something to ponder. I know that skinny bm's can signal inflamation but they also can be the result of hemmies. Maybe 2-3 bms is your new normal. Just some thoughts to think about.
Posted 1/2/2012 5:59 PM (GMT 0)
Of course each person is different, but the idea that a bag is worse than death to you really shocks me.  I had a similar story to you - tried every drug, diet, supplement etc available with no relief.  Then I nearly died from blood clots, pneumonia, c.diff and sepsis which occured at the same time as side effects to my UC and the drugs I was taking, so the bag wasn't really a choice for me.  It has been wonderful.  I will have the takedown surgery in 2-3 weeks.  Most of the time I don't even think about the bag.  I'm able to do things and eat things I haven't in years.  I got my life back.  And when I have the takedown, sure, I'll have to go to the bathroom more often, but I will be able to hold it as long as I need to.  After all I've been through, that doesn't seem to bad for me.  Please just keep your options open.  I know surgery is scary, but not having it can be scarier for a lot of people.
Posted 1/2/2012 6:08 PM (GMT 0)
why do you think a bag would be worse than death?
✚ New Topic ✚ Reply