Tired of this darn disease

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sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 2/10/2009 2:51 PM (GMT -6)   
I'm going to try to make this short because I am so tired, sick and drained.

First. about two months ago I felt a flare coming on... I was going between constipation one day and diarrhea all day the next. I tried to ignore it until January because my fav. GI was on maternity leave until then. Well Jan comes around and I made an apptment, but couldn't make it. The next week I got a virus that was so bad I had a 102.4 fever for 4 days. I couldn't eat for a week. I finally broke that... then was laying in bed and had horrible pain and went to the ER... had two kidney stones. I've passed those...last on on Sun afternoon.
While I was having my virus for a week I stopped taking my Lialda because I wasn't eating... then... my kidney stones hurt so bad that I just really didn't think about starting again... Well.. the past 5 days it's started getting harder and harder for me to eat yet again... I pretty much ONLY ate to take my meds. (I've been taking the Lialda again for 5 days now)
For the past week I've been so sick I've been having very watery, BLOODY Diahrea with tons of mucous. Sometimes I only had mucous. I was running to the bathroom all the time... it was way worse...that's part of why eating was hard. So at work yesterday I talked to my boss and told her I want to be fulltime because I love my job, but I'm so sick right now I feel like I'm not able to give my 100% and I hate that. I told her that I didn't want to lose my job I just didn't know what to do...that I had to figure out what to do with my stomach. She sent me to part time. My husband picked me up for lunch and was furious...I was in so much pain I called my GI and told her (crying) that I didn't know what to do. (as I had called her on friday as well telling her EVERYTHING that's been going on. She had me try taking steroid enemas twice a day over the weekend, which didn't help and I told her I had too much trouble keeping them in) She said that because I wasn't eating much at all...she was really worried and to go to the ER. I was having pain all over my stomach not just my left side...it was my whole lower stomach and my right side etc.... She said that I might be dehydrated, that I could have an infection, and that it might have spread....etc
She said she could prescribe me the prednisone (and I moaned and groaned at that word) but that it wouldn't work till 24 hours later. She said I needed to go to the ER. So after fighting with my husband over money and my job... I went.

I wasn't dehydrated go figure, but they gave me an IV, took blood, and actually right when I got there I had to go so bad I pooped in a collection thing so they sent that off to be looked at. The doc said I had a heart murmor...asked me about my ovaries? I guess cuz he pushed on my stomach and that's around where it hurt too..but it was my whole lower stomach... although my grandma had ovarian cancer... I got anti nausea med through IV, Dilaudid, and prednisone through IV....

My GI started me on 40mg of Pred. I JUST STARTED losing weight again... I was started on this crap right after my honeymoon at same dosage and was on it for 6 months and gained 40 pounds. I am SO DISTRAUGHT and upset. I don't want to go through this again. I HATE prednisone its evil. But unfortunately it's necessary. She also said she wants to try me on 6mp...when I dunno. I am gonna make an appt today for this week. I'm just so upset and so depressed and I really wish I could just get this danged surgery. She told me that since I hadn't tried 6mp no surgeon would touch me with a 10 ft stick cuz I haven't exhausted all medicinal options yet. But if you ask me 6mp has way more side effects and worse off crap than surgery!!!? ugh. I just want this all to be gone. I want it done...and it's worse that NO ONE UNDERSTANDS not my hubby mom or dad or friends and im sick of it.

Sorry I said this was going to be short. Forgive me
Kara, 21F Married.


Medications:

<FONT color=green>Lialda - 4 pills in the morning w/ food.
Steroid Enemas and Mesalamine Enemas


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 2/10/2009 2:56 PM (GMT -6)   
Did I mention that all last night my right side was hurting me SO bad. I even took a Vicodin and it didn't help. I started puking too... and I was super sick and in tons of pain. Blah. I'm going to ask my GI what that could have been. My right side isn't hurting anymore, but I still can't hold much in my system foodwise or drink. I ate a piece of bread for the god awful pred.
Kara, 21F Married.


Medications:

<FONT color=green>Lialda - 4 pills in the morning w/ food.
Steroid Enemas and Mesalamine Enemas


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/10/2009 3:17 PM (GMT -6)   
I am sorry you are feeling badly. I know you are hesitant to try 6MP but it really isn't a scary drug. Back when I was on it, in the 1990s, there wasn't much known about it and I was worried about the risk. However, in the early 2000s it was finally determined that at the low level dosages that UC patients are on it's fairly benign. It's way safer than prednisone if that makes you feel any better. I took it for 2 years and never showed improvement but here I am 7 years after my last dose and I have no long term effects from 6mp.

You need to give the drug about 3-6mos to take effect if you opt to try it. Again, it's prednisone you want to stay off of.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 2/10/2009 3:24 PM (GMT -6)   
its no meds i want to be on LOL its surgery i want... i freakin want to be done with it all.
Kara, 21F Married.


Medications:

Prednisone 40mg Again! (groan)
Lialda 4 a day (at the moment)
Antibiotic.
 
I am so sick of this disease!


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 2/10/2009 4:17 PM (GMT -6)   
Sorry you are having such a hard time. Even if you go on 6-mp or another drug, I would schedule a consult with a surgeon. Especially since surgery is a possibility to you. I am not sure about the statement that a surgeon won't do surgery if you haven't gone through all the meds. Bratcat did try 6-mp and remicade (and we are glad she tried). Unfortunately they didn't work well enough. In the meantime, you should do as much research as possible. Find the best surgeon, type of surgery, pros and cons for your situation, etc. Then, if you choose to go that route, you are already well prepared.
Feel better.

--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 2/10/2009 4:45 PM (GMT -6)   
I would definitely set up a consult w/a surgeon.  Every GI I have been to has brought up surgery before I tried 6-MP, I think what your GI said is very untrue.  I would also make sure your pain isn't coming from other areas (like your ovaries or where ever else they think you could be having issues).  Just because you have UC doesn't mean you can't have other issues (obviously).  Did you get your stool tests back yet?  Maybe you have c. diff or some sort of infection.
 
I'm really sorry that you're feeling so sick, I would get a surgeon appt. ASAP.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
75mg 6-MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/10/2009 7:08 PM (GMT -6)   
Sorry you are going through so much. I hope you can get some relief soon!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 2/10/2009 11:56 PM (GMT -6)   
Man I hate Pred too. Whenever I take it, I break out in acne.
Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day
 
 
 
 

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