Son just diagnosed

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

nicksmom
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 10/27/2007 5:17 PM (GMT -7)   
My son age 19 was just diagnosed with UC. It began Sept. 07 and with the exception of occasional bloody diarrhea hasn't been an issue - He had been on Asacol for 12 days and then began "a full blown UC flair up" according to doctors. He has been in bed for 6 days, abdomen pain, sparatic fever 101 to 102. Now we on Preds, Asacol, antiobiotic and pain med. Can someone tell me how long this episode could last if we are doing everything we're supposed to?

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 10/27/2007 5:32 PM (GMT -7)   
I've had UC for 10 years but I've never been one to get a fever with a flare up. I know it's the weekend but if you are worried that this is persisting and not getting any better, I'd say why not call your doctor's office? Someone will be on call and can tell you if you're supposed to be seeing better results.

Does anyone else here know if allergies to Asacol are possible? After a week on a drug you could get worse if you weren't tolerating it.

Hang in there. I hope your son starts to get better asap. You've found a good place to get support and info.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


scici85
New Member


Date Joined Oct 2007
Total Posts : 8
   Posted 10/27/2007 5:32 PM (GMT -7)   
i had UC since i was 15. i am now 36. My episodes use to last up to 3 weeks. try not to eat solids because it can irritate the ulcers and cause more bleeding. i would eat baby food and ALOT of fluids since i would have 10 to 15 bowel movements a day. Try to buy potassium in liquid form or  a chelated form this way his body can absorb it better. Your body gets dehydrated and your potassium and magnesium can drop below the normal range. UC can be controlled but he must take care of himself. My last flare up (Aug 07)lasted 4 weeks and my colon preforated. i had emergency surgery and i now have a temp ileostomy and hopefully i should be going for my reversal surgery and i will be back to normal UC free. i hope he feels better Flare ups can be very painful and r somewhat like going into labor.

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 10/27/2007 5:34 PM (GMT -7)   
I just checked online and the info for Asacol says to call your doctor if you have fever or cramps or headache. I think calling the doctor is the way to go.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


scici85
New Member


Date Joined Oct 2007
Total Posts : 8
   Posted 10/27/2007 5:42 PM (GMT -7)   
My fevers would last for about a week after taking the prednisone and asacol. if that didnt work then i was admitted into the hospital at which point they would intravenously give me 100mg of prednisone, potassium and a hydrocortisone enema morning and one right before bedtime. No food for about 3 days then i was able to go on a liquid diet and gradually start to eat solids. every time i had a bad flare up i would stay in the hospital for about 4 to 7 days. Dont wait to long to go. If you don't see an improvement call your doctor and go to the hopsital  

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 10/27/2007 6:53 PM (GMT -7)   

There's also a possibility that he's sensitive to the asacol. There's a small minority of us who can't take it because it gives us terrible diarrhea and pain. If so, they can try another of the available drugs. For instance, I can tolerate both Pentasa and Colazal, but not Asacol. Sometimes it takes a bit to find the proper dosage and combination.

But fever, yes, you definitely need to call the doctor. That suggests an infection and isn't usual with a UC flare.


Judy
 
Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 
 
Now in remission for almost two years. Remicade has been my wonder drug.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 10/28/2007 12:48 PM (GMT -7)   
Research and find the best doctor you can get.

Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 11/1/2007 11:03 PM (GMT -7)   

It is possible for Mesalazine (The drug name for Asacol) to actually make colitis worse. Fever is NOT a normal part of UC and I would call to speak with Nick's specialist asap. Fever is a far more prominent symptom for Chron's.

Also keep him away from NSAID (such as ibuprofen) or Asprin based pain medication unless specifically told to use it by your son's gastro specialist.

Finally, if you don't trust the specialist he is seeing - find another one. Good gastro specalists are hard to find.
 
**Just made your link active :)

Post Edited By Moderator (dakotagirl) : 11/2/2007 5:22:10 PM (GMT-6)


nicksmom
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 11/2/2007 7:00 AM (GMT -7)   
We've been in the hospital since Monday - the culprit was the asacol - nasty stuff - it's pretty sad when you get more sick with medications that are supposed to help. The are inducing heavy dosages of steroids for now, there is some improvement and hopefully we will go home today. I almost believe if we had done nothing to try and clear the UC up we would have been better off. Not sure what they are going to try after the steroids but I will absolutely check all all possible side effects. Sad thing is we asked three different times if this could be making him worse - they said chances were slim. Thanks so much for your and everyones help.

Harpo
Regular Member


Date Joined Jul 2007
Total Posts : 262
   Posted 11/2/2007 7:03 AM (GMT -7)   
Asacol gave me hives so bad They looked like flames on my body...
Male 36yrs old. Indeterminate Colitis 6 yrs.


Pro-bio

Protonix
multi vitamin


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 11/2/2007 7:07 AM (GMT -7)   
Judilyn said...

But fever, yes, you definitely need to call the doctor. That suggests an infection and isn't usual with a UC flare.


I disagree. Fever is not uncommon with a moderate to severe flare. From www.webmd.com:

The symptoms of ulcerative colitis may include:

  • Diarrhea or rectal urgency. Some people may have diarrhea 10 to 20 times per day. The urge to go to the bathroom may wake you up at night.
  • Rectal bleeding. Ulcerative colitis usually causes bloody diarrhea and mucus. You also may have rectal pain and an urgent need to empty your bowels.
  • Abdominal pain, often described as cramping. Your abdomen may be sore when touched.
  • Constipation. This symptom may develop depending on what part of the colon is affected. Constipation is much less common than diarrhea.
  • Loss of appetite.
  • Fever. In severe cases, fever or other symptoms that affect the entire body may develop.
  • Weight loss. Ongoing (chronic) symptoms, such as diarrhea, can lead to weight loss.
  • Too few red blood cells (anemia). Some people develop anemia because of low iron levels caused by bloody stools or intestinal inflammation.

Diagnosed with ulcerative colitis spring 1999
C-scope confirmed UC diagnosis 9/18/2007
No explanation for right side pain and thickening of bowel wall
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/2/2007 12:07 PM (GMT -7)   
So sorry to hear the asacol was so harsh on your son. Asacol, dipentum and colazol have all made my UC much, much worse, and I find it hard to believe the adverse effects are as low as reported on the patient info. sheets, but of course many do seem to tolerate them well. The only one of the mainstay 5ASA's I haven't tried is lialda, but I believe that is essentially asacol with a different coating.... so I am terrified to try one and go through what I have gone through with the toehrs (searing pain, bleeding and D).

Your son can take heart that one can enter long, multi-year (for some even multi-decade) remissions even after one or mroe severe initial attacks- this crazy illness seems to have little rhyme or reason sometimes. Seek out all the information on both conventional and alternative treatments with an open mind, gradually so as not to be overwhelmed. This is a good forum esp. on conventiional treatments.
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 mg pred, 100 mg Imuran
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet
 
 
 


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 11/2/2007 12:15 PM (GMT -7)   
So sorry to hear he was dx. I do hope he gets better soon.
I agree you can have fever with UC. I've seen it on multiple sites and have had one during a regular flare for about a week (possibly other times too b/c I'd feel like a fever just broke). Oddly, I didn't get one during my major flare. I believe asacol also made me worse, the rowasa enema form of it actually. The doc thinks I'm nuts...all the docs think I'm nuts...since it's such a rare thing to have happen. But not unheard of. I don't seem to be too bad with the Lialda though, so maybe it wasn't the mesalmine. I've been in a flare for 7 months, and I know some people take years to find a way to stop him. He will find ways to deal with it and lessen the symptoms though no matter what. I did the scd diet and vitamin e enemas for a year and a half and was way better on that than any meds the doc ever gave me. That and licorice root. The steroids didn't work for me in the hospital. There are a TON of things to try. It can be very very overwhelming, but it WILL get easier to deal with.
I do hope he is someone who can take a simple drug or natural cure and be done with it though. It can work that way too!
dx 4/05 with pancolitis UC after birth of my second child... meds worked randomly
SCD and vit e enema remission for 18 months and had another drug free baby 10/06
Let flare get out of control and even steroids wouldn't work 7/07 - docs wanted surgery
lialda x4 daily and started remicade 10/26/07
 
 


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 11/2/2007 12:33 PM (GMT -7)   
Sorry to hear your son is having a tough time. I found out the hard way I was allergic to sulfasalazine (another uc med) though I can tolerate Colazal. Hopefully soon they can get him on the meds that will work for him. Keep us posted!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


WhiteSox1
Regular Member


Date Joined Oct 2007
Total Posts : 135
   Posted 11/2/2007 12:44 PM (GMT -7)   
Hi nicksmom
 
I'm so sorry to hear about your son. sad   Things, will get better.
 
I was dianosed also with UC this September.  September 6th in fact.  At first I was scared to death of what was happening to my body but since then I have learned all I can about this disease to help fight it and am doing much better as your son will be.
 
A piece of advice, though.  Watch out for the side effects of steroids.  They're nasty.  Also, ask your doctor everything about the steroids they are giving your son.  While in the hospital they didn't tell me anything about the steroids I was on and had to learn what the side effects were the hard way.  Now, when ever I'm prescribed something, I quiz the doctor to no end.
 
Take care.

NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 11/2/2007 12:56 PM (GMT -7)   
nicksmom,

I noticed your son is taking anti-biotics, it maybe a good idea to have him take a good probiotic as well. Search the internet and read all you can about "probiotics" and why it's important to take them after or during antibiotic use.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
 


nicksmom
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 11/9/2007 11:41 AM (GMT -7)   
ok - dr. appt today, he wants to begin lowering predisone which I'm all for, but wants to start on very low dosage of Azathioprine. As the Preds decrease the Azathioprine will increase. Anybody out there have any information on Azathioprine. I can find what all the drug companies say but I prefer the personal experiences to know what to expect. Thank you so much for all your well wishes and support.

cycling_sasquatch
Regular Member


Date Joined May 2007
Total Posts : 167
   Posted 11/9/2007 12:27 PM (GMT -7)   

Seems kind of soon to start aza. IMO.  Usually if a flare persists after prednisone treatment, or the patient, like myself can't get off the pred. without flaring up, the DR. will go to aza. 

I've been on it since May, and it seemed to work pretty good, though this past week I had a setback when down to 2.5 mg pred and am back up to 7.5.  Started at 75 mg aza. and now at 125.  Fatigue is pretty bad for me, but other than that all I'd say is that it takes a while to kick in.

I'd also add that like your son, I was pretty fine when first diagnosed.  Just occassional blood, but no diarrhea.  I was put on Colazal and 2 weeks later started a major flare.  But I don't know what it was, as I've had no problems really with Asacol or Lialda (though I don't think either do anything for me.)

Dx Left-sided UC Dec. 2006
Currently:
Azathioprine (Imuran) 125mg/day
Prednisone 2.5mg/day (trying to taper-started at 60 6/1)
Lialda 4/day
Multivitamin, B complex vit., fish oil, calcium, fiber supplement, probiotic


nicksmom
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 11/9/2007 1:59 PM (GMT -7)   
That's kind of what I was thinking, he wasn't doing bad at all until we started the asacol, so why not try and wean off the preds and see what happens - I may talk to dr. again before we start.  Although the asacol did a number on his colon - he seems be be progessing he is just so tired.  Thanks again for your input it's really helpful.

nicksmom
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 11/11/2007 8:42 AM (GMT -7)   
Can you guys tell me what you take for probiotics? The more I read on that, it sounds promising. Thanks, Nicksmom.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 18, 2017 3:24 PM (GMT -7)
There are a total of 2,906,841 posts in 319,001 threads.
View Active Threads


Who's Online
This forum has 158345 registered members. Please welcome our newest member, Twinsdog.
430 Guest(s), 13 Registered Member(s) are currently online.  Details
Africa99, john4803, 07kr5, Smara, Michael_T, SeanL88, Serenity Now, Missouri, Mark FW, tata212, gabybee, Frostypro, ljimd