Need Reassurance and / or advice

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Date Joined Mar 2007
Total Posts : 111
   Posted 5/9/2008 8:53 AM (GMT -7)   
VIEW IMAGE Posted <script>document.write(''+ myTimeZone('Fri, 09 May 2008 08:15:07 GMT-0700', 'May 09, 2008 11:15 AM')+'');</script> May 09, 2008 11:15 AM >May 09, 2008 11:15 AM>
My son had step one of J-pouch surgery on April 18th. All went well until we got home (about 6 days later). He has the most intense painful sores in his mouth. He has developed pimples that break and bleed in the down below region. He has a sty and he's lost 50 lbs in the last 3 months. He can't eat (he tries). He drinks lots of water b/c he doesn't want to get dehydrated.

He's on anti fungal, anti viral, antibiotics, and painkillers. Does anybody know what's going on and will he get better? I'm beginning to wonder if we made the right decision. Does it have anything to do with the fact that he was on Remicade and 6MP before surgery.

Mother of 18 year old son
Ileostomy on April 18, 2008

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Date Joined Aug 2006
Total Posts : 6571
   Posted 5/9/2008 11:47 AM (GMT -7)   
wasn't he on pred too? that can cause some weird stuff to happen to you as you get off of it. I was on 6mp and Remicade before my surgery and i didnt have any of those problems I am sure it is hard for him to eat with those sores, coudl he maybe try icecream or milkshakes?
Are the pimples around his stoma and stuff, or at the crotch area? Some antibiotics can give you thrush, which kind of looks like that, and it can grow in moist spots, although i don't know if it can grow in that area.
i sure hope he gets soem help, and i will def keep him in my prayers!

Regular Member

Date Joined Mar 2007
Total Posts : 111
   Posted 5/9/2008 11:59 AM (GMT -7)   
He was on 40mg of Prednisone when he went in the hospital and then he was on 40mg though an IV before surgery.  They tapered him off pretty quickly after surgery (40mg on 18th, 75mg of some steroid 19th, 50mg on 20th, 25mg on 21st and then has been on 10mg for the last 2 weeks, now they are tapering to 5mg for a week).  The sores are on his scrotum.  He says they look like big pimples. The doctor said that looked like a bacterial infection, but she took a culture to test for a staff infection.  He is just so miserable and he looks like crap b/c he's lost sooooo much weight and I wonder if he even has any energy to fight these infections.

Mother of 18 year old son
Ileostomy on April 18, 2008

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Date Joined Feb 2008
Total Posts : 35
   Posted 5/9/2008 12:31 PM (GMT -7)   
My 17 yr old daughter had a colostomy on April 15.  In the couple of weeks before her surgery she developed a bad rash down both of her sides.  While in the hospital they did biopsies to test for shingles/thrush/chicken pox you name it.  They ended up saying that it was probably from the steroids. It is starting to go away. It sounds like they are tapering your son really fast.  My daughter was on 40m before the hospital and then 60 IV in the hospital and now they are tapering her 5m a week so she is down to 30 this week.  She got the sores in her mouth and then two fever blister looking things in each corner of the outside.  She has been applying neosporin on the ones outside twice a day and it really seems to be helping.  Also, last week she got something on her eye that looked like a sty but it seems to be gong away.  She has lost 25 lbs..  I know what you mean by enough energy, this has taken every bit of strength that she had away.  She is very weak.  I just wanted to let you know that you are not alone.  Does he still have pain? My daughter still has some pain and seems to get really sick at her stomach a few times a week.

Regular Member

Date Joined Mar 2007
Total Posts : 111
   Posted 5/9/2008 12:37 PM (GMT -7)   
I think that the pain from all the sores in his mouth have significantly taken away from any of the pain from the ileostomy.  His wounds are healing really well and his stoma looks good and the swelling is going down.  It's all the other stuff.  He isn't eating right so his output is very watery and he is very gassy which embarrasses him b/c he thinks that's how it's always going to be.  This whole thing just stinks and I truly hope we made the right decision.  It all happened so fast.

Mother of 18 year old son
Ileostomy on April 18, 2008

Regular Member

Date Joined Jun 2007
Total Posts : 302
   Posted 5/9/2008 2:30 PM (GMT -7)   
I wish I could be a help to you. It is so painful when our children are hurting. I know because I've been there too. From reading all of your posts, he has been fighting this disease a long time and Lord knows, ya'll have tried many kinds of medicines. I never had remicade but 6mp messed up my liver enzymes and prednisone was horrible. My surgery wasn't that dandy either,but time does make things better.

Your son has the worst part over with now. It takes some people longer to recover than others.... And being 18 is hard on the strongest . When my daughters were 18 , everything embarrassed them.

If I could, I would encourage him to hang in there--it'll get better. A young guy in my neighborhood had that same surgery several years ago ,and today he looks wonderful. In fact, he is a robust policeman.

I'll be thinking of ya'll and praying, too.

Post Edited (nene205) : 5/9/2008 6:06:12 PM (GMT-6)

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Date Joined Nov 2006
Total Posts : 552
   Posted 5/9/2008 5:52 PM (GMT -7)   
I have no answers but just wanted to let you know that I am hoping your son feels better soon.  I know he has been through so much and it stinks that he can't just "enjoy" recovery and a new beginning.  Maybe it is because of the drastic drop in prednisone so quickly. Hopefully the doctor will come back with a definitive answer and treatment. Even though he is having trouble eating, he has to make sure he gets enough in his system. 
My daughter is going to the surgeon on Monday for a consultation.  We want to at least try to get as much information as possible about what might come down the road for her.

--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 50 mg prednisone
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!

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Date Joined Feb 2006
Total Posts : 5698
   Posted 5/9/2008 6:26 PM (GMT -7)   

I know this all seems so overwhelming and scary at this point but it will get better.  If I recall correctly your son had emergency surgery after failing to respond to the medications.  This is the worse state a patient can be in for major surgery and recovery will be harder.  He really needs to eat, or at least drink some high calorie beverages.  Carnations Instant Breakfast makes a variety in cans that pack more calories than Boost or Ensure.  This might be a good start.


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

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 5/9/2008 7:07 PM (GMT -7)   
you may want to let him take some gas-x to keep the gas under control a little more. i don't know that it will help a whole lot since he isn't eating and his ostomy is new, but i don't see how it would hurt.
suebear has a good idea with the boost and stuff, pediasures little drinks taste better than those i think though, lol. OR even see about like a protein shake.

New Member

Date Joined Apr 2008
Total Posts : 16
   Posted 5/13/2008 7:53 PM (GMT -7)   
Sorry to hear your son has been suffering so much.I had similar problems 3 years ago post op,te sores in the mouth were terrible I had a visiting nurse who suggested swishing Mylanta in my mouth for a few minutes 3 or 4 times a day and that did the trick,they cleared up in a few days.Hope this might help.
Take care,

Veteran Member

Date Joined Apr 2007
Total Posts : 1366
   Posted 5/28/2008 1:53 PM (GMT -7)   

I don't know if your son is still having problems but I just wanted to suggest having him rinse his mouth out with salt water. I get sores in my mouth all the time, I guess from having ulcerative colitis, and I just mix some sea salt in warm water and swish for a bit. It stings for a second and then the pain for the sores becomes less and they heal VERY fast after that.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)

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