when do you seek help for flare up of UC

[Guest guest]

Hi everyone. My name is Pam, my daughter is JP, who was diagnosed with Crohn's & colitis in Jan 2006 and PSC in March 2006. I have never written before, but found this wonderful group and have been "lurking" for about the past 11 months.

My question is not related to PSC, but since so many here also have Crohn's & /or Colitis, I hope you won't mind my asking. Other than diagnosis, JP has had one flare in Sept, which was treated with Prednisone, finally tapering off at end of October. She is on Pentasa 2 gm/day, and was told to try to increase to 2.5gm/day. She had tried to do this once before at end of October, at same time as adding fish oil, she developed loose stools, stopped the fish oil, and went back to 2gm Pentasa.

She was doing fine, until a couple of weeks ago, when she developed a cold, and started to have looser stools. I thought it might have something to do with fighting off the cold, and at the same time reminded her that the dr really wants her to increase the Pentasa. She is now 4 days into 2.5 gm Pentasa and is having increased number and looser stools, blood seen only a couple of times.

My questions are:

1. Could this be from the increase in Pentasa, should she stop it, or give it more time to work?

2. At what point do you go to the doctor? Can flare ups sometimes just resolve on their own, with careful diet and rest, or do you always need some intervention such as Prednisone or a change in medication?

(Her appetite is good, no fever, keeping up with daily activities, but feeling less happy as this goes on.

3. Also, is anyone taking 6 MP, which is the next med plan for her, (dr doesn't want to give more Prednisone), if so, how is it working out?

One of the staff members mentioned that she would need a separate dorm room, as she is in college, which makes me concerned, as she plans on being a Registered Nurse. Does she need to change career path if she goes on immunosuppressant?

Thanks in advance for any help. I read all the emails that go through here, and I know this group has a wealth of information.

Pam - Mom of JP, 19 y/o (Crohn's Colitis Jan/2006, PSC March/2006)

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[Guest guest]

Hi Pam;

Sorry to hear about JP's IBD flare(s). Can I recommend reading this

article(?):

http://gut.bmj.com/cgi/content/full/53/suppl_5/v1

Guidelines for the management of inflammatory bowel disease in

adults. M J , A J Lobo and S P L on behalf of the IBD

Section of the British Society of Gastroenterology. Gut 2004;53:v1-

v16.

It does indicate that for aminosalicylates like Pentasa, a small

percentage of patients with IBD can be intolerant ... " Acute

intolerance in 3% may resemble a flare of colitis as it includes

bloody diarrhoea. Recurrence on rechallenge provides the clue. "

The disease can flare spontaneously and go into remission

spontaneously, and that's why they often see high remission rates

even in " placebo " treated patients in clinical trials ... " The high

placebo response rate should be noted, because disease activity in

Crohn's (and UC) fluctuates spontaneously. "

The article goes on to describe the use of immunosuppressants like 6-

MP and their possible side-effects.

See also the file called " LichtensteinGR2004.pdf " [Lichtenstein GR

2004 Use of laboratory testing to guide 6-mercaptopurine/azathioprine

therapy. Gastroenterology 127: 1558-1564.] in the " files/Research "

folder of the PSC Support Group web site at Yahoo:

http://health.groups.yahoo.com/group//files/Research/

Sorry I can't answer your question about whether JP should pursue a

different career path if taking an immunosuppresant ... perhaps

health care professional members of the group could specifically

address this question for you?

Best regards,

Dave

[Guest guest]

I was diagnosed with PSC in 2001 and with Crohn's a couple of years ago. I

started taking the immunosuppressants a few months ago (Imuran and Remicade). I

am currently going to school to be a registered nurse. I too questioned whether

or not I should forget about school. I asked my doctor and he said that if I

wanted to be a nurse, then go for it. He said we would handle problems as they

come up. The hard thing will be clinical when you are exposed to lots of

things. After you graduate, you can enter areas of nursing that are less likely

to expose you to illness, such as Labor and Delivery. I already work in a

Hospital, so I am around illness most of the time and I have been fine so far.

I certainly can't quit my job. I need insurance too badly!

I am also a foster mom and just welcomed a 2 and a 4 year old. Both were sick

when they came with respiratory problems and I did catch it but it has not been

terrible and I contacted my doctor as soon as I realized I was getting sick. It

worked out fine. Everyone is different but this has been my experience. I hope

this helps and good luck.

>>> 3/10/2007 10:21 PM >>>

Hi everyone. My name is Pam, my daughter is JP, who was diagnosed with Crohn's

& colitis in Jan 2006 and PSC in March 2006. I have never written before, but

found this wonderful group and have been " lurking " for about the past 11 months.

My question is not related to PSC, but since so many here also have Crohn's & /or

Colitis, I hope you won't mind my asking. Other than diagnosis, JP has had one

flare in Sept, which was treated with Prednisone, finally tapering off at end of

October. She is on Pentasa 2 gm/day, and was told to try to increase to

2.5gm/day. She had tried to do this once before at end of October, at same time

as adding fish oil, she developed loose stools, stopped the fish oil, and went

back to 2gm Pentasa.

She was doing fine, until a couple of weeks ago, when she developed a cold, and

started to have looser stools. I thought it might have something to do with

fighting off the cold, and at the same time reminded her that the dr really

wants her to increase the Pentasa. She is now 4 days into 2.5 gm Pentasa and is

having increased number and looser stools, blood seen only a couple of times.

My questions are:

1. Could this be from the increase in Pentasa, should she stop it, or give it

more time to work?

2. At what point do you go to the doctor? Can flare ups sometimes just resolve

on their own, with careful diet and rest, or do you always need some

intervention such as Prednisone or a change in medication?

(Her appetite is good, no fever, keeping up with daily activities, but feeling

less happy as this goes on.

3. Also, is anyone taking 6 MP, which is the next med plan for her, (dr doesn't

want to give more Prednisone), if so, how is it working out?

One of the staff members mentioned that she would need a separate dorm room, as

she is in college, which makes me concerned, as she plans on being a Registered

Nurse. Does she need to change career path if she goes on immunosuppressant?

Thanks in advance for any help. I read all the emails that go through here, and

I know this group has a wealth of information.

Pam - Mom of JP, 19 y/o (Crohn's Colitis Jan/2006, PSC March/2006)

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[Guest guest]

I've done lots of drugs for my Crohns/UC--predisone makes me psychotic

and fat, and Asacol only gave me relief up to a point.

What REALLY helped me, and it's now been working for three years, is

pushing pre- and pro-biotics...yogurt cultures. You can either take a

supplement or start pushing yogurt that contains all of the essential

bacteria.

I started doing this during a flare-up, and within two weeks, it was

almost like I didn't have the disease at all. Yes, I flare up on

occasion, but then I just double up on the pre/probiotics, and in a

day or two, I'm fine again.

I don't have any scientific data to back me up...just my own experience.

Tom

>

> Hi everyone. My name is Pam, my daughter is JP, who was diagnosed

with Crohn's & colitis in Jan 2006 and PSC in March 2006. I have never

written before, but found this wonderful group and have been " lurking "

for about the past 11 months.

>

> My question is not related to PSC, but since so many here also have

Crohn's & /or Colitis, I hope you won't mind my asking. Other than

diagnosis, JP has had one flare in Sept, which was treated with

Prednisone, finally tapering off at end of October. She is on Pentasa

2 gm/day, and was told to try to increase to 2.5gm/day. She had tried

to do this once before at end of October, at same time as adding fish

oil, she developed loose stools, stopped the fish oil, and went back

to 2gm Pentasa.

>

> She was doing fine, until a couple of weeks ago, when she developed

a cold, and started to have looser stools. I thought it might have

something to do with fighting off the cold, and at the same time

reminded her that the dr really wants her to increase the Pentasa.

She is now 4 days into 2.5 gm Pentasa and is having increased number

and looser stools, blood seen only a couple of times.

>

> My questions are:

>

> 1. Could this be from the increase in Pentasa, should she stop it,

or give it more time to work?

>

> 2. At what point do you go to the doctor? Can flare ups sometimes

just resolve on their own, with careful diet and rest, or do you

always need some intervention such as Prednisone or a change in

medication?

> (Her appetite is good, no fever, keeping up with daily activities,

but feeling less happy as this goes on.

>

> 3. Also, is anyone taking 6 MP, which is the next med plan for her,

(dr doesn't want to give more Prednisone), if so, how is it working out?

> One of the staff members mentioned that she would need a separate

dorm room, as she is in college, which makes me concerned, as she

plans on being a Registered Nurse. Does she need to change career

path if she goes on immunosuppressant?

>

> Thanks in advance for any help. I read all the emails that go

through here, and I know this group has a wealth of information.

>

> Pam - Mom of JP, 19 y/o (Crohn's Colitis Jan/2006, PSC March/2006)

>

> ________________________________________________________________________

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

[Guest guest]

I am a registered nurse. Labor and delivery, actually. (and I'm glad that I don't have to take care of sick people very often). I'm not an infection control specialist, but I can say unequivically that washing your hands proplerly is the MOST important way to protect your health. ALWAYS ALWAYS wash your hands. ALWAYS wear the appropriate personal protective devices (sometimes only gloves are needed, other times you need a hat, mask, disposible gown, shoe covers......) It's important that your daughter know where to find the infection control manual at any facility where she is taking care of patients. It has all the good info about what kinds of PPDs are needed for what kinds of infections.

I have three kids. Most of the time when I get sick, it's something that my own KIDS gave me. Maybe I am more careful at work than at home. Or maybe I kiss my kids more than I kiss my patients. :-)

In nursing school, you don't always get a whole lot of choices about who you take care of unless you make prior arrangements. Have your daughter talk to her doctor about it. Are there any patients (active TB comes to mind, or maybe an AIDS patient with opportunistic infections) that she absolutely should NOT take care of? Is the doctor willing to write a letter explaining the situation?

I wish her the best of luck. Nursing is a fabulous profession with almost unlimited possibilities.

If your daughter ever wants to talk to a nurse that is juggling some of the same health issues that she is, please give her my email address.

1megpie@...

[Guest guest]

I see no need for a separate room at college/university. That seems

like an over reaction or based on older ideas. Being on 6MP doesn't

cause that kind of significant immunosuppression. And even tx

recipients who are definitely immunosuppressed far more because they

are usually on more than one drug and higher dosages, don't need to

live alone. Someone is talking without knowledge.

As for the loose stools issue, I would suggest continuing for a total

of two weeks. If there is no improvement drop the dosage of Pentasa

back to what was tolerable (or even stop it for a few days and then go

back on the tolerable dosage) and call the doctor and let them know her

symptoms and what you've done. It may be that JP can't tolerate that

amount of Pentasa.

Aubrey, MD

PSC '81, UC '90, LTX '98, Recurrence '05

[Guest guest]

I was on Imuran (immunosupressant) , 200 mg dose, for 6 years for UC. I was in the Air Force (worked in the hospital), worked at a VA Hospital, and was pregnant with our son all while on this med. That being said, the only thing I ever "caught" were a few more colds a year and they took about 2 weeks to totally clear up instead of my normal one week. Even though I worked the healthcare managment side of the house, I had constant daily patient interaction (physically handing them copies of records, sharing my pen, etc.), so I was given all the same vaccines that all other medical personnel were given and they were always current. I noticed a few more colds w/our son, only because it seems like we've been together 24/7 for the last 3 years, and we lived in Alaska, a hotbed for winter colds. The only reason I stopped the

Imuran is becasue it wasn't working for my UC, and I now take Remicade, which has been miracle for me. I believe Remicade can also supress the immune system, but I haven't noticed a difference in getting any more sick. From what I understand, Imuran and 6-MP are very similar. The way my old GI doc explained it to me is that there are a few more steps for your body to break down the Imuran, that it basically does the same thing as 6-MP. If I am wrong, please someone correct me. Best of luck to you. 30, UC 1/01, PSC 5/05, Expecting baby #2 in Aug. and feeling pretty good.

The fish are biting.

Get more visitors on your site using Yahoo! Search Marketing.

[Guest guest]

Pam,

My daughter Suzanne was originally dx’d with indeterminate colitis, and we now

are more certain that she had ulcerative colitis. I think I can provide some

insight via your questions. Suzanne has been fighting UC for the past two years

and just recently had surgery resulting in a j-pouch; coincidently she too is

going to go to school to be a nurse.

Your questions:

1. Could this be from the increase in Pentasa, should she stop it,

or give it more time to work?

I had complete confidence in Suzanne’s doctors so I would refer you to your

doctor for an answer to this question. Suzanne was on Pentasa for two weeks and

it significantly increased her bowel movements so her doctor immediately took

her off of Pentaza. However, everyone is different.

> 2. At what point do you go to the doctor?

The rule of thumb that was given to us is that if you see a pattern across three

days (increased frequency, urgency, cramping and/or blood) it’s time to call the

doctor. From the phone call they will usually determine if you need to be seen.

Can flare ups sometimes

just resolve on their own, with careful diet and rest, or do you

always need some intervention such as Prednisone or a change in

medication?

Our experience is that Suzanne’s flare up’s never resolved with out medical

treatment. Unfortunately she has only had two flare ups – the second one was

never quite resolved and lead us to surgery. Again ---- everyone is different.

> (Her appetite is good, no fever, keeping up with daily activities,

but feeling less happy as this goes on.

I think you are looking at some important variables – how is her “daily

functioning”. Suzanne got to the point where she had to be on homebound

instruction. It sounds like JP is living a fairly normal life, which is a great

sign!

> 3. Also, is anyone taking 6 MP, which is the next med plan for her,

(dr doesn't want to give more Prednisone), if so, how is it working out?

6-MP is one of the medications that Suzanne tried. There was NO concern about

her being immune compromised because of the 6-MP. At one point she was

considered immune compromised after a long hospital stay, but that was because

of heavy doses of prednisone, Remicade and 6-MP (to tell you the truth I can’t

even tell you what else she was on at that time – the biggest concern was the

Remicade and prednisone).

One of the staff members mentioned that she would need a separate

dorm room, as she is in college, which makes me concerned, as she

plans on being a Registered Nurse. Does she need to change career

path if she goes on immunosuppressant?

One of the most important lessons I have learned from Suzanne’s experience is to

decide who you are going to get advice from. You can ask five different people

and get five different answers. I listened to what everyone had to say, compared

their situation (or advice) to Suzanne’s situation and if I had any concern or

questions I took them to her doctors.

Do you have doctors that you trust? If you do, trust them! If not, seek second

opinions until you find a place that you are comfortable.

Take care,

LINDA

(Mom of Suzanne, 17; UC 1/04; PSC 3/04; j-pouch 2/07)

________________________________________

> Pam - Mom of JP, 19 y/o (Crohn's Colitis Jan/2006, PSC March/2006)