Frustrated (long, sorry)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 1/12/2008 11:02 AM (GMT -7)   
I need to vent a little. I am so frustrated with waiting. I've been in this flare now for almost a year and a half. I was a lot worse a year ago this time...now i'm at about 70%. No blood but pain and D and all the side effects of the pred (been on that for a year as well)

My Gi took me off of imuran to see if that is what has been making me so nauseas. And since being off I am way less nauseas. So he sent my stools to be looked at once more to be sure my nausea isn't another kind of infection or a bug i picked up last nov in mexico. If it comes back clear we are going to try imuran again. if it is what is making me nauseas on to remicade I go.

In the meantime he has finally lowered my pred to 10mg (it's been at 15 since last august, coming down from 60 in jan 07) I am steroid dependent and now face coming down on pred whiile not on imuran. Last time I was under 15 mg it was horrible.

I'm just so frustrated with waiting for test results and waiting to see if drugs kick in. I'm not horribly flaring so I'm having a hard time conceding to remicade. I want off of pred but am so afraid of the next few days and weeks. These past few months I have jsut been simmering and waiting. Having blood drawn monthly for cbc and bimonthly for prometheus...and not getting any better. Where i'm at is almost livable. I'm used to the pain now. I've accomodated the bathroom in my schedule (6-10 trips a day) even when I am teaching. My parents are pushing me to have surgery and don't seem to understand why i'm not jumping to get rid of my colon. My Gi has never even brought up surgery. I could see considering it if I was bleeding heavily still but not where I am now. Oh and now i find I also have strictures and am having pain and problems with my diet becasue of that. I can't seem to tolorate much fiber at all without lots of pain.

I'm just so sick of being sick. I'm so glad that I'm not as sick as I was a year ago but at least then there seemed to be urgency in my treatment. Now I feel as though all I do is wait. I wait for the next blood test, the next dosage, wait for the drugs to kick in.

Thanks for the shoulder. It really does make me feel better just to get it out there.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08!
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


blessteve
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 1/12/2008 12:51 PM (GMT -7)   
Hang in their. Long flares are the worst.
Vent all you want cause everyone here understands.
Diagnosed panColitis 1990.
Current Meds Asacol x4 twice a day.
Pred for flares. I still have my colon THANK YOU GOD!!!
veggie juice-wheat grass juice--fish oil
Started 1/01/08
raw milk-kefir made with raw milk--natto--caprylic acid-oregano oil
probiotic
1/10/08 Started healthy diet again.
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/12/2008 2:24 PM (GMT -7)   
Hi Kelly - I just wanted to drop a line and tell you that I hope you feel better soon. If you aren't happy with your treatment, you can always talk to another GI. I am a bit surprised you were pulled off Imuran only because it takes so long to build up in your system. Perhaps, if you're only off it a few days you can go right back to your earlier dose, but given that it may be making you sick, you may want to go back up on it slowly. I found the hardest part of Imuran was getting on it, and scaling up the dose, so just do that slowly to give your body a chance to adjust.

Hang in there and remember that neither your parents nor your GI know what you're feeling. so you have to do what works for you, even if others think you should be doing something else.

feel better soon.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 1/12/2008 3:04 PM (GMT -7)   
Kelly, I know exactly where you're coming from! I was just thinking the other day that my whole life revolves around when I have to take my pills. Vent away as much as you want hun, it feels good to get it of your chest. I'm sure you mentioned before, but were you ever on Rowasa? If so, did it help at all?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 1/12/2008 3:51 PM (GMT -7)   
Have you tried dietary changes, omega-3s to reduce inflammation or probiotic supplementation? There are alot of ways you can improve your gut ecology and assist healing so you're able to reduce or eliminate medications. The book Listen to Your Gut has a wealth of knowledge on various options.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 1/12/2008 4:59 PM (GMT -7)   
Since he just in the last couple of days took you off Imuran, I'd see if there isn't a better way to deal with the nausea. I know some folks take their Imuran at night to avoid side effects. It's been such a good drug for me, I'd like everyone to have such a good result from it.

Any reason why your doc doesn't have you on rectal meds? That might be a step in the right direction as well.

I understand your frustration. I hope things turn around for you soon, Kelly.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 1/12/2008 6:17 PM (GMT -7)   
Thanks all.

I was on rectal meds but they weren't doing anything and I couldn't afford them anymore.

I have tried many many different dietry adjustments and plans with no success. I have tried chinese herbs, aloe, probiotics, nothing has helped (and I gave each plenty of time, usually more than a year). I am hoping the imuran will work the second time around but I am just tired of waiting to see if it will.

Thanks for the support!!!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08!
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


blessteve
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 1/12/2008 6:42 PM (GMT -7)   
For me when in a big flare nothing works but when in
a simmer my body responds to some simple things like diet etc.
So when UC calms down give another go with some stuff you already tried.


Diagnosed panColitis 1990.
Current Meds Asacol x4 twice a day.
Pred for flares. I still have my colon THANK YOU GOD!!!
veggie juice-wheat grass juice--fish oil
Started 1/01/08
raw milk-kefir made with raw milk--natto--caprylic acid-oregano oil
probiotic
1/10/08 Started healthy diet again.
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 1/12/2008 7:34 PM (GMT -7)   
Kelly - so sorry you're going through so much! Do you think any of the nausea could be from your reflux??? I find that sometimes that's what's causing the most of my nausea... Just trying to help you and your doc trouble shoot!

Honestly, I'd think that if the Imuran didn't get you off the pred yet, it might be time for Remi. A year of flaring seems awfully long. Although my first flare etc. lasted nine months... My second "major" one was another nine months - with that one I started Imuran to get off of the pred.

Vent all you need! We're here :)
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/13/2008 9:00 PM (GMT -7)   
Hi Kelly,

I am so sorry for what you are going through. I had a bad couple of months and could not imagine doing that for a year. I hope you are able to go back to the imuran and not be nauseaus anymore. If not I would seriously consider remicade and also there are some other drugs out there I would consider too, prograf and humira (maybe you can get on a study?).

Hope you are well soon!

Sending all my wishes your way.
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


SDM
Regular Member


Date Joined Aug 2007
Total Posts : 62
   Posted 1/14/2008 11:38 AM (GMT -7)   
Kelly, I really feel for you and am sorry you are having such a rough time right now. My longest flare like you are dealing with was about 3 months and I was at my wits end trying to cope then. A year and a half is just plain cruel. I hope you get feeling better soon. I wish I could offer something other than healing thoughts but I have no other suggestions for you. Hang in there. Big hugs.
Sandra, age 34


Diagnosed December 2006 with UC (proctitis)

Asacol (800mg x 2)

Salofalk suppositories as needed

Multivitamin

Vitamins E, C, B complex, calcium & magnesium

Omega 3/6 supplements (500mg x 2)

Probiotics

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 18, 2017 9:54 AM (GMT -7)
There are a total of 2,906,740 posts in 318,991 threads.
View Active Threads


Who's Online
This forum has 158336 registered members. Please welcome our newest member, efedrez.
391 Guest(s), 13 Registered Member(s) are currently online.  Details
scifigal2k, PeppermintTea, PeterDisAbelard., Spring, Michael_T, ppm guy, EruditePaul, chikinnooodle, Darie, Katia, Progressing, RocketMan12, Steve n Dallas