Please help me

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AlliUC
Regular Member


Date Joined Mar 2009
Total Posts : 52
   Posted 4/5/2009 9:11 AM (GMT -6)   
I have been in flare for about 5 weeks. I am on 60 mg of prednisone and salofalk enemas every night. I have had some improvement but I am having a hard time this week, especially this weekend.

I have gone from bloody diarrhea to no movements at all. I am totally blocked up. The pain in my lower back and abdomen is terrible. There is some gurgling and sometimes I almost feel like I want to go but nothing every comes of it. In the mornings I pass gas, enema and mucus. I haven't passed anything else in two weeks.

I am week and tired. My joints and muscles all hurt. My entire body is uncomfortable. I don't sleep. I am completely emotionally overwhelmed now. I spent a good deal of yesterday in tears. I thought I would feel a lot better by now. My partner is also suffering emotionally now and that made yesterday even more difficult. It is hard to be a caretaker.

I have been put on a very restricted diet. I am only eating chicken, rice, potatoes, occasional beef, yogurt, broth, and fluids. I have been told no fruit, vegetables or grains.

Is there anything that I can eat or do that will help me empty myself? If I eat some spinach or avocado? What about a prep for colonoscopy? That sure did clean me out before but I am afraid it might hurt something? I am pretty sure my problem is that I am still so swollen that what is being produced by the part of my colon that is healing just can't get through.

I spoke to my doctor last Wednesday. He said that he feels I am improving and that I should call back next week.

I need to do something.

Please share any ideas.
Thank you
Female, 41
1996 diagnosed proctitis (during pregnancy, just months after I quit smoking)
Mar 3, 2009 diagnosed ulcerative colitis - it got my entire colon - severe

Fighting my first major flare up of UC (but I think my first UC flare up was at the end of 2006, 2 months after I quit smoking again)
60 mg prednisone (started at 30 but was doubled immediately) Mar 5/09
salofalk enemas = 5-aminosalicylic acid (mesalamine) added March 24/09 after second colonoscopy showed not enough progress ( previously managed proctitis with same stuff as suppository and then enema in 06)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/5/2009 9:23 AM (GMT -6)   

I would consider a trip to the ER if you have not had a bow/l movement in weeks and are in pain.  This could be a sign of toxic megacolon or could you possibly have colonic inertia as well.  I don't want to scare you but this sounds serious and definitely not normal for someone with UC.

 

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


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 4/5/2009 9:24 AM (GMT -6)   
My doc always recomends Movicol to me its a sort of laxative that works by ismotic increases the ammount of water taken in by the bowels and stools so makes them soft and easier to pass down through the inflamation,I would noy try any other laxatives as they may be to harsh,I,m sure most of the pain and discomfort you are feeling is due to build upof stool.

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 4/5/2009 10:41 AM (GMT -6)   
I too would suggest to go to the Emergency room. You may have a blockage or something. Better safe than sorry.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/5/2009 10:48 AM (GMT -6)   
Hi Alli
I am extremely sorry to hear about your pain because of blockage/bowel obstruction. Well my first advice would be to immediately consult your Doc. Ask him he can put you on to Liquid Paraffin. Even though it is OTC (can be sourced without medical prescription) and has no side effects, still I feel you may ask him. I have been taking that in case of extreme situations when everything, including my wind, motion, pee had got blocked. Only two tea spoons of Liquid Paraffin worked and the entire system got cleared within half an hour. I suppose some time it is also known as mineral oil, even though I feel mineral oil is castor oil, which is also used for same purpose.

Wish you good luck and good health.
45 years Male Attorney
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
"Faith is the bird that sings when the dawn is still dark."
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracl: Albert Einstein
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


B00e00n00
Regular Member


Date Joined Mar 2009
Total Posts : 55
   Posted 4/5/2009 1:57 PM (GMT -6)   
I agree with the others, I would get it checked out to make sure you okay. If you have enough weight and are not nutritionally depleted, I would recommend a juice diet for a few days. Get a Masticating Juicer like Champion and juice celery, apple and pear, have about 8-10 glasses a day for a few days and see if things improved. You'd be surprised how effective this can be.
UC since 2006

2009 UC Pancolitis though Primiarly Left Sided, Active Moderate

Current Meds: Lialda 4 tab a day
Predinsone (40 mg a day) since 3/30 Not doing anything, hopefully something soon!

Current Supplements:
Vit. B-12, Vit. D3, VSl#3 Probiotics

What does remission feel like, I don't remember!

Nip UC in the bud with diet before it nips you in the bud (or butt) for good!


AlliUC
Regular Member


Date Joined Mar 2009
Total Posts : 52
   Posted 4/5/2009 2:20 PM (GMT -6)   
Thanks for your support and ideas. I was thinking about getting a juicer and started to looking at them online.

I will wait and contact the doctors office in the morning (I think the ER would be a huge time burner with little in the area of results but I will go if I get worse or get a fever). Hopefully they can tell me what is okay for me to do.

Thanks again. It is really helpful to have a place to say help!
Female, 41
1996 diagnosed proctitis (during pregnancy, just months after I quit smoking)
Mar 3, 2009 diagnosed ulcerative colitis - it got my entire colon - severe

Fighting my first major flare up of UC (but I think my first UC flare up was at the end of 2006, 2 months after I quit smoking again)
60 mg prednisone (started at 30 but was doubled immediately) Mar 5/09
salofalk enemas = 5-aminosalicylic acid (mesalamine) added March 24/09 after second colonoscopy showed not enough progress ( previously managed proctitis with same stuff as suppository and then enema in 06)

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