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Beginning to despair

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Ulcerative Colitis
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Posted 2/18/2010 11:28 AM (GMT 0)
The worst flare I had was five years ago and lasted for over a year.  In that time I was hospitalised three times and almost lost my colon.  I was practically housebound and had no quality of life.

I then had four fantastic years of med free remission, with the exception of a few minor flares that I very quickly got under control with rectal enemas.  I thought I had my UC sorted and would never again experience a severe flare.

My latest flare started off mildly enough in August 09 and I wasn't worried as I thought that I would be able to get it sorted quickly with enemas as before.  I started the enemas and the Balsalazide and things weren't clearing up, so I was also prescribed clipper steroid.  Things have now got so much worse that I am really beginning to despair.  The last two weeks I have had so much blood and pain,  I am constantly in the bathroom and my appetite is going.  I find it difficult to eat anything as half way through I get severe cramping and have to run to the bathroom.  I am starting to feel the way I did back when I had my worst flare and am feeling pretty miserable right now. 

I tried taking turmeric and Aloe vera, but not sure if these have contributed to making things worse so have now stopped them. I have bought slippery elm but am a now afraid to try that incase it's the wrong thing to do. 

Sorry to go on, just feeling low right now.

Posted 2/18/2010 1:59 PM (GMT 0)
Have you ever tried diet modification?

I have never used turmeric or aloe so cannot comment on them but then again it seems every colon reacts differently and what works for one person doesn't for another.

Sorry for your low state. Been there.
Posted 2/18/2010 2:16 PM (GMT 0)
I am curious why you don't stay on maintenance medications? This could possibly be why you are flaring again.

Sue
Posted 2/18/2010 2:22 PM (GMT 0)
I assume you have already contacted your GI for advice and are keeping him/her apprised of your situation.

As far as strategies in the meantime, and having had a similar experience, I would be inclined to pursue an elemental type diet to keep you hydrated and nourished and give your colon a rest. I have no experience with turmeric so I cannot help you there. I know that not all varieties of aloe vera will be helpful (some may actually exacerbate your symptoms). You will want the type of aloe vera that does not contain aloin (a laxative). But having said that, aloe vera alone will probably not be sufficient.

I don't think taking slippery elm will hurt, although I have only taken it via an enema, not orally. Actually, one of the best methods I found to help control bleeding was an enema containing slippery elm as one of its ingredients (the healing implant enema by Patel-Thompson).

Other than that I say get as much rest as you can. We're pulling for you.
Posted 2/18/2010 3:06 PM (GMT 0)
Thanks so much for your replies!

I haven't tried diet modification before, but am willing to try anything that might help so will definitely look into it.

I didn't stay on maintenance medications because I stupidly thought that I didn't need to. In my worst flare I was on 3x3 Balsalazide and prednisolone and I never got any better. I finally went into remission with Azathioprine, but as it made me feel sick and I lost so much hair I thought I was going bald I came off it......stupid I know! I remained in remission so thought that I didn't need drugs and that perhaps they were what made me have such a long flare. With this latest flare I now know different and regret that I didn't take any maintenance medication!

I have an appointment with my doctor tomorrow. My GI appointment is not until June, I will see if I can get this brought forward but sometimes you can't get an appointment very quickly on the NHS.
Posted 2/18/2010 3:20 PM (GMT 0)
Hi Joanna
Phone your hospital and ask the switchboard to connect you to your consultant's secretary. If you tell them you have started a new flare they can often slide you into a much earlier clinic (they sometimes keep a space for exactly this) or they could offer you a short notice cancellation.
Best of luck
Sue

Post Edited (suenew61) : 2/18/2010 8:24:46 AM (GMT-7)

Posted 2/18/2010 4:18 PM (GMT 0)
It could be that your UC is throughout your colon. If that's the case, you'll need to make sure your oral med is formulated to treat the entire colon. The balsalazide med I'm familiar with is Colazal (in the US), and it targets the left side.
Posted 2/18/2010 4:38 PM (GMT 0)
     Joanna, I can sympathize with you.  I did the same thing when I was first diagnosed in 1998.  As soon as my symptoms subsided, I went off my meds.  I enjoyed a two year remission and then flared again.  The doctor took me off Asacol and put me on Colazal (I have ulcerative proctitis).  He never told me that I couldn't go off the meds when in remission, maybe he thought I knew better.  After obtaining remission once again went off the meds.  When I flared for the third time in 2002, I was placed on 6MP along with the prednisone (which always was successful in getting me out of flares) and the Colazal.  I stuck with the meds but soon began flaring yearly.  Now my flares are out of control.  I have been sick almost constantly since being hospitalized for the second time in May of 08.  Right now I have only been off the prednisone (for the upteenth time) for a week and a half.  I have bleeding, terrible rectal pressure, pain and going to the bathroom at least ten times a day.  My 4th Remicade infusion is tomorrow and if it weren't I know I would have to go to the hospital.  I am trying to stay off the prednisone until after my infusion to see if the Remicade will work this time.  I'll give it to Monday, if no relief, then back on the prednisone because I cannot live like this any longer.
Posted 2/18/2010 6:51 PM (GMT 0)

Joanna

 

This is my first post to this forum and I just wanted to offer you some encouragement.  I'm also feel I'm continually fighting despair and I think our stories are somewhat similar.  I was diagnosed almost a year ago February 2009 and have been in a constant flair ever since with good and bad days and weeks.  I’m on every medication that is currently on the market I think, colazol, 6-MP, Remicade, Prednisone, nightly enemas, calcium for osteopenia, prenatal vitamin, probiotics and perhaps antibiotics because of a yeast infection.    I try to watch to my diet because for me it plays a big part and I find if I eat after six I will suffer through the night.  Most nights it does keep me up for an hour or two and my bms are usually super painful and look like mudL.   The side effects of the drugs is a whole other story.  The one that perplexes me most is how the prednisone hypes me up and gives in the shakes but I also feel very fatigued all at the same time.  This is beyond my understanding. 

            Before UC I was a very active person.  I teach elementary PE a job I love and in 2008 completed my first MS Ride, 180 miles in two days.  I also enjoy training and doing triathlons.  Basically anything that is fun and physical is what I enjoy doing.  In a couple of weeks I’m even going to try curling at a convention center here in town J  

            You will be in my daily prayers.

            In April I’m headed to the University of Chicago Medical Center not sure if I will be having surgery or not but it’s looking that way.  Keep the faith and stay strong.

            By the way, I love this forum and everyone who has posted it has help so much!!!

 

edited, please see rule #11. 

Post Edited By Moderator (fruitgirl) : 2/18/2010 1:15:34 PM (GMT-7)

Posted 2/18/2010 9:30 PM (GMT 0)
Sue, thanks for the advice - I will phone the hospital in the morning.

My last colonoscopy was in November and it showed that my UC was only on the left side up to the splenic flexure.  I never knew that Balsalazide (Colazal) targets the left side, it's amazing the things you learn on this forum that the GI's don't tell you!

Christine it sounds like you are having a really rough time, hope your Remicade infusion tomorrow brings you some relief and you don't have to go back on the dreaded pred - will  be thinking of you!

Hello hopein3's and welcome!  Thanks for the encouragement. Wow, you are on a lot of meds, sorry that you are still having a lot of problems even with all these drugs!  I am also usually a very active person. I like running and did a lot of spinning. I also have two big German Shepherd dogs that I like to go running with and take for long walks, I hate it that they are having to suffer now by not having their usual exercise as running at the moment is out of the question and their walks have had to be dramatically shortened.  By the way, I did manage to read your post before it was edited, but didn't get a chance to respond as I had to run to the bathroom again!  Thank you for that and I'm glad that you have your faith to help you through all this, you will be in my prayers also.  Hope you start feeling better soon and good luck with the curling.

Posted 2/18/2010 10:15 PM (GMT 0)
Joanna- I'm sorry you're feeling so ill. I'm in a fairly bad flare (at least for me) now, myself.

What are clipper steriods, if I might ask? I'm currently on an enteric steroid and it's taking FOREVER to work, so I'm wondering if it's the same thing.

Regarding turmeric-I find that when I have mild yellow curries when I'm flaring, I feel a bit better the next day.
Posted 2/18/2010 11:46 PM (GMT 0)
Malkavian,

I'm not sure what an enteric steroid is so don't know if it's the same. Clipper is beclometasone dipropionate, I think it is only used as a treatment for UC in the UK. My consultant wanted me to try it rather than put me on prednisolone, as I was on that before for nearly a year and even at 40 mgs it didn't stop the bleeding and symptoms. With the clipper it is just a four week course and you don't have to taper off it, I didn't find it helped at all, in fact I think it made things worse.

I started taking the turmeric at the same time as the aloe vera, things seemed to get worse but they may have done anyway. I should have tried taking them individually instead of starting them both at the same time as it makes it difficult to know which one to eliminate - I am learning all the time with this disease!

Sorry your flaring badly right now and at such a young age too, I hope things start to improve for you soon.
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