Suffering at the hospital

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Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 4/13/2008 8:23 AM (GMT -6)   
Ok, they admitted my son down at Univ of Chic on Friday afternoon.  We've seen a doctor twice with little information concerning what's in store. They have him on 40mg of Methylprednisolene in an IV form which doesn't seen that much different then 40mg of Prednisone orally (but what do I know) We really haven't seen any improvement. He's on a liquid diet and miserable b/c besides having to go to the bathroom 15-20 time a day he feels OK and wants to eat.  He can't figure out how they are looking for a solid stool, but there's nothing in his system but liquids.  We've also noticed that over half of all commercials involve food.  Apparently, the doctors were meeting last night and discussing surgery.  He's hoping if he has to have the surgery he can at least eat a little first or go home for a few days.  We'll see.
Mother of 18 year old son
Remicade
6MP 100mg


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/13/2008 10:25 AM (GMT -6)   
That sounds rough. So sorry to hear it. I'm very curious about the liquid diet because I know nothing about it. Is the idea that the nutrients in liquids will be absorbed better? Or do you think it's just the idea that it's less stress on the body to avoid digesting solid food? I would think that if someone wants to eat, they should. If he's already running to the bathroom all day, it's not going to make it worse, right? At least he'd get some pleasure from eating something and maybe it will provide more energy. I would definitely argue this one with the doctors to see what the philosophy is behind the liquid diet.

Commercials -- yes, I notice it whenever I'm fasting in preparation for a colonoscopy or when I'm flaring. It makes me wonder about people who can't afford enough food. It starts to seem extremely strange to advertise food on TV.

I don't know anything of your son's history, but if the doctors recommend surgery, I would encourage you to take time to think about it and get a second or third opinion. You just want to be sure you understand all your options and feel really good about the decision you make.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/13/2008 10:50 AM (GMT -6)   

My experience was that if you are sick enough to be hospitalized then you don't get food!  The idea is to give the colon rest and not make it work while trying to get the inflammation down with drugs.

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


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/13/2008 11:00 AM (GMT -6)   
Thanks, Sue. That makes sense.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/13/2008 12:03 PM (GMT -6)   
Lew, there are two different varieties of liquid diet. "Clear liquid" is jello, broth, etc. - anything you can see through. "Full liquid" includes cream soups, ice cream, milk - pretty much anything that's liquid at room temperature - in addition. Full liquid is much more tolerable for most than clear.

I hope your son's meds kick in and he feels better soon. If that isn't to be, it might be just as well for him to go ahead with the surgery - he'll already be pretty much cleaned out and won't have to do that awful prep again.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5187
   Posted 4/13/2008 1:18 PM (GMT -6)   
The idea behind liquid diets is definitely to rest the troubled gut. I have a neighbor now age 95 who told me that when she developed bleeding colitis in the 1940s, the only available medical treatment for it was belladonna + pureed food. She followed that regimen for 2 years before healing. I wonder if Total Parenteral Nutrition would help your son? Have his gastros ever mentioned it? I think it was used pretty often in the 1980s to treat severe flares in hospitalized IBD patients. Best wishes for your family to get thru this tough time. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 4/13/2008 1:26 PM (GMT -6)   
He's on a clear liquid diet, and is going to be prepped for a colonoscopy tomorrow.  The medicine doesn't seem to be making any big difference.  The doctor was in and basically said we could put him on higher doses of steroids or put him in clinical trials, but alot of them require that you be off everything else for 6 months or so.  My son has sort of come to terms with the fact that he would rather have the surgery (even knowing the risks) and get on with his life. He hates the ups and downs of 2-3 months of feeling OK and then a flare and then the steroids.  He feels that all these medications may be causing more harm to his body down the road than the surgery.  Being 18, it is ultimately his decision.

Mother of 18 year old son
Remicade
6MP 100mg


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/13/2008 1:35 PM (GMT -6)   
I think you've raised a very brave and wise young man, Lew. I'll be praying for him.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/13/2008 2:57 PM (GMT -6)   
From what this hospitalization has taught me the IV steroids are stronger than the oral; however, they still take 2-3 days to fully kick in. I'm in my second 24 hour period - one round of steroid every eight hours - and noticing a minor difference. Still experiencing around 10 gassy, mucousy bms per 24 hrs. I was on a full liquid diet - and now a low residue diet (which the kitchen doesn't seem to understand). I think formed bms are wishful thinking at this point.

I will be thinking of your son. Hopefully the c-scope tomorrow will provide the insight the docs need for surgical recommendations.
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Cortifoam, Aciphex, Forvia, and Pro-Bio, Calcium, Vitamin D
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/13/2008 4:29 PM (GMT -6)   
For more information about liquid diets, ask a question on the crohns board addressed to member "writer." She is an author who is actually writing a book about the benefits of liquid diets for IBD and how American Medicine either fails to recognize its effectiveness or just thinks it is too hard for us to stick too. When I feel a flare coming on, I go on my own modified liquids only diet for a few days and give my guts a rest. I haven't needed steroids since. (But I have mild to moderate crohns)
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 4/14/2008 3:31 PM (GMT -6)   
Surgery is a major decision (one that I have not had to make yet!) but my brother opted for it at the age of 25 after struggling (worse than me) for 3 years. He was single at the time, a young man and for a number of reasons he delayed the process understandably but in the end he had had enough and had surgery. He now says he wishes he had done it sooner, that was nine years ago and he is now happily married with children and cannot remember what it was like to feel unwell.  Everybody is different but it was good for him.
32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 50mg started 4/08
Steroids 40mg per day

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