HealingWell
Search Close Search
☰

U.C,WE MUST HAVE PATIENCE

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/19/2009 5:42 PM (GMT 0)
Well i've been flaring since the spring,had some bloody -D-.Early summer my gastro put me on 40mg of pred,cut it to 30mg-20mg-10mg,now7.5mg.Each taper was after 1 month.Started 6mp approx-August,started at 50 mg-then 75mg-then 100mg-now at 125mg.Before each increase i have my blood work done,just had my blood test on tuesday,i'll talk to my gastro Monday about the results.I'm 6-5-220lbs so the 6mp can be increased,i'm a little frustrated with having -D- most of the time.I have had a normal stool maybe once every two weeks.I've tried many diet suggestions,i go to therapy,i started an anti-anxiety[klonopin] i feel my colitis is partly triggered by anxiety-stress.So where do i go from here.I also take 9 asacol per day,folic acid,3 acidophillus per day,1-1200mg of fish oil,multi vitamin.Someone had mentioned about gluten not being a factor regarding colitis,the gluten is broken down in the upper-small intestines-IS THIS TRUE.Wanted to vent a little, if you have any ideas let me know.Hope you all have a wonderful holiday season,hope were all careful with what we eat.It's going to be hard when the cheesecake comes out,but i'll do my best.THANX
Posted 12/19/2009 5:49 PM (GMT 0)
Forgot to mention rowasa 4-5 per week.Anyone do rowasa every night?
Posted 12/19/2009 7:09 PM (GMT 0)
You should use it nightly.....how long have you been on it?

Are you taking any probiotics?

Are you taking any fibre supplements?


Is your UC throughout or limited?

q
Posted 12/19/2009 10:44 PM (GMT 0)
no probiotics[was using keifer] should go back to it, have thought about supplements[which is best to get stool back or closer to normal].My U.C is throughout my large intestine.I bleed very little[my doc says this could be a sign that the blood is from the rectum,which is supposed to be tough to heal-true-false?].Still having -D-,i feel better when i have a mostly chicken-turkey diet-soup etc.It's tough to lay off pizza,chinese-even though i only have these once a month.I went to trader joes a while back ,got salmon and many other goodies.It's tough with 3 kids,14,12,9,organic is uncool at there age,but i try to eat different from them,not always easy.Any suggestions would be helpful-thanx.
Posted 12/19/2009 11:05 PM (GMT 0)
It occurs to me some acceptance of our fate is also necessary. Fighting against it all the time gets old. I think it is healthy to keep expectatons realistic and learn to manage. We have this and it sucks, but everyone has some kind of challenge or another.
If you lose your eyesight, there may be nothing to be done to get it back and there are some things you simply won't be able to do anymore, although you can learn to manage without it and still have a great life.

This forum used to be more about tips on how to manage, I think. Now it is more about what new thing to try to make it go away. I think some acceptance offers the benefit of peace.
Posted 12/19/2009 11:19 PM (GMT 0)
Hi, i have had UC for about 2 years now, ands its true half the battle is just accepting it. 

Just recently ive been flaring and was put on rowasa enemas, what a reality check, never thought i would be using enemas at the age of 27, still embaressed by it, LOL    UC sucks!

But then again it could be much worse, my friend just had a double lung transplant and her body rejected the new lungs. sad   

    Ben

 

Posted 12/19/2009 11:29 PM (GMT 0)
Hi Ben....welcome to the forum.

One shouldn't really compare illnesses of what's worse, it's only telling yourself that you've not got a right. It's sad to hear about your friend. Why did she need the lung transplant? I hope she'll be able to have another chance...there are so many that seem to be successful. we all suffer differently and some of us will never have what others have. Keep it in perspective...what you have still sucks, but we can live without a colon if it needs to be removed.

Regarding the enemas....they're meds, not ones to make you poo.
Hope they're helping you. To me rectal meds are the cat's meow, so to say.

quincy
Posted 12/19/2009 11:30 PM (GMT 0)
Peety, absolutely acceptance is necessary.

q
Posted 12/19/2009 11:42 PM (GMT 0)
Hi, Quincy i guess your right, shouldnt really compare illness. Anyways she has Cystic Fibrosis. She actually had the transplant six months ago, but just recently, her body rejected them. She is currently in another state on the transplant waiting list, since she was denied another transplant locally.   

As far as the Rowasa enemas, i guess its tough getting use to the fact i have to put something up there, embarrassing for me, I guess ill live though lol. 

Thanks for the input

Posted 12/20/2009 12:10 AM (GMT 0)
benny - I so understand about the embarrassment of using the enemas.  I am 69 and still don't talk to my husband of 48 years about using rectal meds.  Just too personal for me!  Because of arthritis when I tried the enemas I could not do them lying down in bed or anyplace or on my knees so I have to use the foam now sitting on the toilet.  It stays in better.  Probably doesn't work as good but my only choice.

Accepting has been hard at my age.  I was diagnosed at age 66.  I recently talked with an inlaw who has had UC since he was 15.  He has been married to my niece for about 10 years and I never knew he has UC.  He talks about it "matter of factly" as if he always had it and it was normal for him.  That is the attitude I am striving for.

ElaineNY

Posted 12/20/2009 3:11 AM (GMT 0)
I also feel embarrassed even after using enemas for a couple of months. I try to avoid talking with others about 'enema', because they often ask what enema is. Very occassionally, someone looked at me "what? you insert/put something into your rectum?". But, for me enema is the most directly helpful. I will continue to use it buy not talk to others unless necessary.
Posted 12/20/2009 4:18 AM (GMT 0)
Guys i've had colitis since 1985,i feel very lucky,i had a large flare in 86 and have had very minor flares since until this year.Rowasa has always been my wonder drug,it always would knock the minor flare away 100% until this year.I truly feel that my colitis will go in remission.I've been in a 12 step program for many years where you can share anything that you may be going thru[relieves stress-fear etc],i also go to therapy,support groups for colitis etc,etc,etc.With all these positives in my life they can only help along with the meds.I have no problem talking about rowasa,i'd stick a mack truck up there if it would help.I was at a 12 step meeting recently and shared about my flare,i had a person come up to me and tell me about her neice[22-y-o] in the hospital with colitis,i was able to share my experience-strentgh and hope with dealing with colitis.Iwas able to also talk to another family member and mentioned rowasa.I get a 90 day supply through mail order, i joke with my wife about helping me out for the next 90 days with my rowasa,she said she's not that kinky[it's only a joke].Having a sense of humor helps.Ihope you all have a great holiday season-SMILE and if noone told you  to have a great day and i will-thanx
Posted 12/20/2009 4:59 AM (GMT 0)
3timechamp; what a good attitude you have. Thanks for reminding me to have a great day! Humor is definitely needed with a chronic illness. I will say that I'm in remission, but there are things I'd love to eat like a good french fry, but my hubby reminds me jokingly that it might taste incredible now...but you told me to remind you about what will happen later on! So, yep, a good sense of humor goes a long way. I too share with many about my UC when I feel the time is right; I think it can only help others out and another plus is it brings UC to light. And, who knows; there might be someone looking for help with their illness. Take care...and have a great day! ;-)
Posted 12/20/2009 9:56 PM (GMT 0)
     Carol...go ahead and have that French fry.   I have had them twice since starting Remicade.  I used to be called the called the French fry queen...I LOVE them.  For the past several years I have stayed away from them but since I felt so good after the Remi, I thought.....well, I will only eat a small amount.  They weren't the greasy fries you get at the fast food chains though.  I had no problem afterwards either.

     3timechamp....the 6MP should have kicked in by now.  That is a very high dose, by the way.  Make sure you have your blood count checked monthly.  My white count went down to 1.6 while on 100 mgm of 6MP.  The doctor immediately took me off it and waited a few weeks before starting me back on 50mgm (which also did nothing).  I was on it for seven years.  It never kept me in remission though.  Now on Remicade.

Posted 12/21/2009 3:40 AM (GMT 0)
Thanks Christine! I do love those fries too, but fried food and too much sugar is what seems to do me in. The only thing I get are pains in the upper belly, so it could very well be IBS that triggers it, but it's a real pain, lol. How are you doing with all the snow? Go Eagles, eh?
Posted 12/21/2009 4:26 AM (GMT 0)
Christine like i mentioned i'm not a tiny person so i can handle a larger dose of 6mp.Had my blood test last tuesday,i'll call my doc Monday-i don't know if he will increase the 6mp.I really don't know where we'll go from here,remember 6mp is supposed to kick in 3 to 6 months,it's only been about 4 months-lets hope for the best-thanx
Posted 12/21/2009 2:44 PM (GMT 0)
cool  Thanks everyone, its makes me feel better knowing im not the only one going through this lovely illness, and the Rowasa seems to be working. smurf
Posted 12/21/2009 6:53 PM (GMT 0)
Great to hear the enemas are working for you. They will serve you well, hopefully, for a very loooooong time. I'm approaching the 21 year mark.

Remember that once you are feeling "normal", you should taper to every second night for at least 2 weeks or more if needed...then to every third night..etc to find a maintenance dosage.

Keep us posted.

q
✚ New Topic ✚ Reply