Wednesday, 4 June 2008
|
| Pregnancy - Mercaptopurine - 6MP Amy 03:46:23 |
| | Hi everyone,
Just a quick question. Has anyone here taken Mercaptopurine or 6MP
while pregnant? The web has scary information about it. I figured I
would ask the CD patients directly.
Thank you for your help on this!
Amy
|
| |  11 answers | Add comment |
Friday, 30 May 2008
|
| entecort Janetlynnperez 04:08:37 |
| | any personal experiences with that medication, did your hair fall out?
They just prescribed me entecort. I want to expect the unexpected, I am
feeling a little depressed. Any moon face involved, cant take looking ugly
again. Hope you are well?
Janet
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| | 10 answers | Add comment |
Monday, 18 February 2008
|
| Newbie, SedaCrohn, diet Scott 15:18:22 |
| | Hi Everyone
I was recently diagnosed with Crohn's, I'm on 6000mg Sulfasalazine and
35mg Prednisolone (reducing by 5mg/week - started on 40mg) daily. I
made the decision to start Imuran (50mg) today - which I was hoping to
avoid (but I felt better about it after reading lots of msgs on here -
thanks guys!) - the GI said theres only a 30-40% chance of the
Sulfasalazine controlling the condition alone.
Has anyone tried an alternative product called SedaCrohn? Quite a few
people have posted on forums and such that its helped them... but it
surprised me that its never been mentioned on this newsgroup.
Something I found funny - I asked my GP what should I eat (cause no one
told me anything in hospital)... he say eat small portions of bland,
boring mush... the GI that I had in hospital says stay on a light
diet... not too much meat/fat.... I tell the other GI I'm on a light
diet with small portions spread over time... he looks at me and says...
why are you eating small portions... the right diet is a normal,
healthy human one! Are they flipping a coin or what?! <grin>
c'ya
Scott
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| | 2 answer | Add comment |
Sunday, 25 November 2007
|
| Remicade Mr.D. 09:57:58 |
| | Hello To All,
I am sending this post on behalf of my daughter who has Crohns
disease. About five years ago sshe had most of her large bowel removed nad
was pretty good after that . Now she is having difficulties again and her
doctor at Mt.Sinai hospital in Toronto, Canada is asking her to go on a
trial study with Remicade or her alternative is perminent surgery. Does
anyone have any information or experience with this drug, side effects
etc...
From a concerned dad, please answer back.
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| | 22 answer | Add comment |
Wednesday, 24 October 2007
|
| what is the difference between all the aminosalicylates?? David 07:57:51 |
| | Anyone know the difference between osalazine, mesalamine, asacol, and
colazal?? How does one know which is the best one to take??
|
| | 18 answers | Add comment |
Monday, 9 July 2007
|
| Pilonidal sinus John H 12:04:38 |
| | Has anyone had a pilonidial sinus? I have to take a course of antibiotics to
get rid of it as the doctor wants to be sure it isn't still there in 6
weeks, (in which case it may be a cancer). I don't like antibiotics as they
give me d.. I'm eating yoghurt but I have only limited confidence in
acidofilus etc. Initially I tried to self treat with Tea tree oil, but as it
didn't heal and I couldn't see it I had to go to my med center.
John
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| | 3 answer | Add comment |
Monday, 25 June 2007
|
| Has anybody tried powdered cats claw to control improve their crohns disease? John Merritt 16:18:37 |
| | Has anybody tried powdered cats claw to control improve their crohns
disease? If so, what was the dosage they used?
How long did it take before the crohn's responded?
What form did they take the cats claw in?
Did they take the powdered herb as capsules or as a herbal tea?
I am about to try the herb myself in the form of capsules I intend to
make from the powdered herb, if I get a positive result I will post
the results. I am also trying Astragalus at the same time.
John UK
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| | 27 answers | Add comment |
Saturday, 24 March 2007
|
| Son Needs Help-Long Susan S 15:40:02 |
| | My son is about to be 21. Diagnosed with CD at 15. He's been on just about
all the meds there are with a few very brief periods of relief. Now, he's
in the worst shape of his life and I'm scared to death.
He's 6'1 and now down to about 118 pounds. He has constant diarrhea and
pain, he's up most of the night with bathroom trips. He is still working
but I have no idea how he's doing it. Everything makes him sick when he
eats and therefore getting him to eat is a real trick. Although he no
longer lives at home, I'm still very diligent in trying to help him.
He's currently on Immuran, Asacol, Pepcid, and Iron. Today I got him some
B12 drops to help with the vitamin deficiencies. His doctor wants to start
him on the Remicade sometime next week. After reading about it, I'm more
scared than ever.
While in the natural healthfood store, the owner was telling me all about
Jordan S. Rubin, author of several books who also has his own line of
products. According to his book and the owner, he was in much of the same
shape my son is. He has a product called "Primal Defense" that he credits
with saving his life from Crohn's.
Here is what the website www.gardenoflife.com says about this Primal
Defense:
a.. Primal Defense® is the #1 selling probiotic in the Natural Products
Industry according to SPINS
b.. Primal Defense® is the only whole food probiotic containing
Homeostatic Soil OrganismT blends (HSOs)
c.. Unlike other probiotics, the key bacteria in Primal Defense® can
thrive in the toughest digestive environments and are undeterred by stomach
acid
So, here's my questions :
1. Anyone have any experience with Primal Defense, bad or good ?
2. Can he take this along with his other meds ?
3. What about diet ? Any experience with "The Makers Diet" or the SCD
Plan ?
4. What can I really expect from the Remicade treatments ? Are the side
effects going to be as horrible as they sound on the web pages I've read?
Thanks for any help,
Susan
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.837 / Virus Database: 570 - Release Date: 1/17/2005
|
| | 38 answers | Add comment |
Saturday, 25 November 2006
|
| Question about Enema's - Help! Ks 17:09:58 |
| | Hi
I have had UC for 5 years and have been flaring again the last few months -
this time the sigmoidoscoopy showed the inflammation is
confined to the sigmoid area. I was advised to use enemas but I have found
these very difficult to use as I have around 15 BMs a day and cant
hold it in long enough. This is when I try to use Prednisolone liquid
enema. However, I find PredFoam enema much easier to use - at least I can
hold
it in for a couple of hours usually. But, the problem is I dont think the
foam is reaching my sigmoid - Im still bleeding with lots of mucous, despite
using
Predfoam twice a day for over a month.
Do most people on here using enema's use liquid or foam? Which works better
for the sigmoid? I have gotten some Pentasa a short while ago, but
havent attempted to use it yet, as Im too sore and inflamed to hold liquid
in right now. Ive been on Imuran for 18 months which has not helped at all.
I use 3 asacol suppositories a day, I dont think they are helping me either!
Please help! Thanks.
Kam.
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| | 13 answers | Add comment |
Monday, 14 August 2006
|
| Re: Getting the blankety blank IV started Wayne Marsh 16:49:24 |
| | Paul Hinman wrote on 8/12/06 3:01 AM:
The nurses almost always have a devil of a time getting an IV started in me.
My veins are fine, for now. But for the long term, my hematologist has
suggested I get a portacath, a.k.a. "port" placed under my skin. I'm
thinking about it.
Wayne Marsh Minneapolis, Minnesota, USA
waynegmarsh@mac.com
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| | 6 answers | Add comment |
|
| My first Remicade infusion Paul 00:24:47 |
| | Finally, this morning I received my first Remicade treatment. I have
been waiting for this for over 3 years. This current flare has lasted
more than one year with 6 to 15 BMs every day. Yesterday I had 9 and
today I had 6. My appointment was at 9:30 am and I arrived a little
early. As I walked into the lobby of the building, I had a sudden urge
to go to the washroom. I didn't see one right away so I took the
elevator up to the 4th floor were the clinic is. There was a washroom
right beside the elevator on that floor but it was locked. I then
quickly went down the hall to the clinic thinking they would have a
washroom; after all they treat many CD and UC patients. The girl at the
counter told me they had a key for the washroom down the hallway next
to the elevator. The other girl said that someone else borrowed the key
and never returned it. She recommended that I go to another office down
the hall and ask them for a key. I finally made it to the washroom but
I was surprised the clinic didn't have one for me to use.
I went back to the clinic and had to wait a few minutes for the nurse
to show up. We went to a small room in the back that had 3 reclining
chairs. There were 3 of us to receive Remicade, one with Rheumatoid
Arthritis and another with Spondylitis. Since I was the first person in
the room the nurse gave me a list of movies they have. They had about
30 of them and I choose "Mission Impossible 2" with Tom Cruise. I
saw the first one before but not this one.
Since this was my first treatment I had to sign a few forms and the
nurse asked me several question such as do I have an infection, cold or
flu? If I have changed my medication since I saw the doctor that
prescribed the Remicade? Am I taking antibiotics? And a few others that
I can't remember. She explained all the possible side effects and
asked me to inform her if I experienced any of them. She then took my
blood pressure and temperature and connected the IV with a saline
solution drip to each of us before mixing the Remicade. At first she
wanted to connect the IV to the top of my hand. I didn't want it
there because I tried it once before during a clinical trial for the
Adacolumn and it really bothered me a lot. She tried to convince me
that I should have it in my hand but in the end she put it in my
forearm opposite my elbow. One other patient had it in the same place
and the third had it in the back of his hand. After she mixed the
Remicade she added it to the IV and I had both the saline solution bag
and the Remacade hooked up to the IV at the same time.
I asked what I should do if I have to go to the washroom and she said I
could just take the IV pole with me. I had thoughts of dragging it down
the hall to the washroom near the elevator but it turns out the have a
washroom in the clinic and it is only for staff and patients while
being treated. It made me mad that they didn't let me use it before I
started the treatment.
The nurse explained that she would start the infusion at a low rate and
slightly increase it every 15 minutes and take my temperature and blood
pressure every half hour. The infusion and movie both started at
10:00pm. After about a half hour I started to feel a little nauseated.
I was about to tell her and it quickly disappeared so I didn't. I
started to feel real tired and had a hard time keeping my eyes open to
watch the movie. Both the movie and the infusion ended at 12:00pm (2
hours) and I thought that the nurse would immediately remove the IV and
I could go to the washroom. When I asked her about it she said she
would like to keep it in just in case there was a reaction she could
give me a drug through the IV. I didn't like that as I was trying to
hold back going until that time. I couldn't take it any longer so I
dragged the IV pole down the hall to the washroom. Not an easy task. I
was afraid I would be using the washroom more than the 2 others but it
turns out that the woman with Rheumatoid Arthritis used it twice and I
only used it once.
After the treatment I had to wait an hour before leaving. The nurse
said on my next treatment I could leave early if I signed a release
form, but not on the first treatment. Before I left, I told the nurse
about my nausea and how it went away. She told me if I had told her at
the time she would have had to fill out a form and reduced the rate at
which I received it and it would have taken much longer. The new rate
would then be used on all future treatments. Not something I would
like. The nurse removed the IV and just taped a piece of gauze over the
site. I mentioned to her that during my Adacolumn treatment the nurses
always wrapped my arm with a bandage to prevent bruising. She thought
that was strange but said maybe they used larger needles.
My wife surprised me by showing up Just before I was able to leave the
clinic. I finally left the clinic at 1:00pm and my wife and I went out
for lunch. I had a slight headache and felt a little dizzy. I thought a
good lunch would help but it didn't. When I got home I removed the
tape and gauze and there was a bruise. I have had 25 Ad column
treatment over 7 months and never had a bruise. Go figure. I wanted to
do some work around the house but I still didn't feel well so I
rested a half hour before starting. I was still not feeling well but I
started my work anyway. The work I was doing made me forget about my
headache and dizziness. By dinnertime I was feeling fine.
So far I have not noticed any difference with my UC symptoms or my
Arthritis. I know it could take several treatments to notice any
difference. My next treatment is August 25.
Take care,
--
Paul
Visit our photo albums at:
http://www.laflammefamily.ca
http://www.more.laflammefamily.ca
To reply, replace "mail.com" with "laflammefamily.ca"
--
|
| | 22 answer | Add comment |
Sunday, 13 August 2006
|
| IBD in Hawaii Amy 10:57:45 |
| | Has anyone here holidayed in Hawaii while dealing with IBD? We have
tickets to a concert in Honolulu in December, and will probably stay in
a Waikiki beach condo. Are there lots of easily accessible toilets
around? Eg in hotel lobbies? Shopping centres? Public facilities on the
beach?
Also, do the restaurants and grocery stores cater for special diets? I
am fructose-free and can't eat wheat as well as a lot of fruits and
veggies. Plus I have heard a lot of American foods have high fructose
corn syrup as a sweetener.
Any advice would be gratefully received 
Thanks,
Amy.
UC, Australia
|
| | 4 answer | Add comment |
|
| Pharmacy Drug Making For Hospitals Under Scrutiny After Deaths Of Patients From "Compounded" Medicat Guest 05:34:29 |
| | http://www.kaisernetwork.org/daily_reports/rep_index.cfm?hint=3&DR_ID=38998
Prescription Drugs | Pharmacy Drug Making for Hospitals Under Scrutiny
After Deaths of Patients From 'Compounded' Medications
[Aug 08, 2006]
USA Today on Tuesday examined the safety of compounded medicines
that are made for hospital patients either at hospitals' own pharmacies
or at contracted outside pharmacies. According to USA Today, almost all
hospital pharmacies perform some drug compounding, "ranging from
low-risk procedures, such as adding medications to intravenous
solutions, to high-risk work, such as making sterile treatments from
scratch." USA Today reports that hospitals in most states are not
required to test the sterility or potency of compounded drugs, and the
"frequency and thoroughness of state inspections of the pharmacies vary
widely." FDA's ability to monitor the drugs' safety "is sometimes
hampered by questions over whether it has jurisdiction over what
generally is a state matter," according to USA Today. U.S.
Pharmacopeia, a not-for-profit drug safety organization, in 2004
released new standards for drug compounding, but only 12 states have
adopted them. Sarah Sellers, a consulting pharmacist who served on an
FDA advisory panel on drug compounding until 2002, said some high-risk,
sterile drugs should not be made at pharmacies. Sellers added that
standards for compounding are rarely enforced. Steve Silverman, acting
assistant director at an FDA compliance office, said, "Sterility is an
area that we're very concerned about," but he added that if outside
pharmacies were to stop compounding drugs for hospitals, "then sterile
compounding likely would return to hospital and local pharmacies that
may be less well-equipped." USA Today profiles Mary Washington Hospital
in Virginia, where at least 11 cardiac surgery patients developed
serious bacteria infections last year after their hearts were injected
with a contaminated solution mixed at a pharmacy that contracted with
the hospital. Three of the patients died (Appleby, USA Today, 8/8).
--
Luke
|
| | Add comment |
Saturday, 12 August 2006
|
| Correction John H 23:25:56 |
| | That reply is not worth responding to
"John H" <JohnH@nospam.no.nz> wrote in message news:424871e1@clear.net.nz...> That reply is worth responding to.
|
| | 19 answers | Add comment |
|
| Ostomyland Weekly Support Chat 12th August Kathy from England 15:13:40 |
| | Main Chat is Saturday 8pm UK Time which is 3pm EST ish.
Have you been told you need an ostomy (colostomy/ileostomy) to deal
with your Crohn's or Ulcerative Colitis?
Maybe you have already had this surgery and are coping with it?
Or maybe a loved one is dealing with this and you want to support them?
We are an ostomy support group, here to help you with both the
practical side of living with your ostomy and the emotional issues.
You will meet people of all ages and with different medical conditions
( not all have IBD).
Some have a reversable ostomy, others a permanant one. We also have
those who have undergone a reversal or a J pouch.
Don't face it alone.
Want to chat another time? The room is open 24/7 and is usually busy.
Online clock to help with those time zones!!
Now you can check what time it is in the UK:
http://www.ostomylinks.co.uk/chattimes.html
=========
To join Ostomyland via java go to:
http://www.ostomysupport.info/chat.html (Jason's page)
Or http://www.autoimmunity.co.uk/chat/ostomyland2.html (Kathy's back up
page)
and join us in the ostomyland chat room from there. A free-to-use Java
Client is embedded into the page that is dead easy to use.
Nothing to download.
=========
If you use mIRC, or Besirc or some other IRC Chat Client, here's the
server details you need to connect to Ostomyland:
Server: irc.fef.net
Port: 6667
Channel: #ostomyland
If you prefer a specially configured version of mIRC is now available
which will take people directly to the new channel on the new server.
The download link can be found at:
http://ostomyland.com/mircfef/mirc_ostomyland_fef_v62.exe
WebTV Users, you need to use your own TV based software to join us -
included free as part of the WebTV browser software. Use the server and
port and channel
info when requested by your software to join.
=========
We often have members who have never been in a chatroom before.
Please don't be nervous. These pages will show you exactly what to
expect and what to do. If you're still unsure after you've looked at
them, email me for help. (Kathy-tas (at) ostomylinks.co.uk)
http://www.ostomylinks.co.uk/chathelp14.html
=========
Wrong time-zone for you? I shall be in the room 6pm - 9pm Perth
(Australia) time, 11am - 2pm UK time on SUNDAY.
We usually get a small group in - come and join us.
=========
The channel is open 24/7 for general chit chat or ostomy talk
during the week.
If it's quiet, stay a while - someone else may join the room soon.
=========
Look forward to seeing you in the meeting Saturday night, the weekend
or later on
in the week.
Kathy
Jason's Living With a Colostomy Website:
http://www.ostomysupport.info
|
| | 3 answer | Add comment |
Friday, 11 August 2006
|
| colonoscopy this past monday Mr. Matoot 21:45:54 |
| | I just had a colonoscopy on Monday. My GI said my Crohns is active.
He also did a biopsy, but did'nt mention it to me. The report stated
the he biopsied the "normal" part of my colon. Do I have anything to
worry about or am I just being crazy?
Is this just standard procedure?
Thanks,
Rob
|
| | 6 answers | Add comment |
|
| Diet with UC Eric17901 18:14:32 |
| | Hello all,
My name is Eric and I live in Pottsville, PA. I am a 32 year old
male and have been dealing with UC since about 1996, but was told I
offically have it back in July of 2000. I have had some flareups, the
last one I had before this one was back in late2004 into early 2005,
well then my doctor prescribed to me predisone on top of the
sulfasalazine, well that worked for a little bit up untill about May of
this year, during that time I came off the predisone because I didnt
like the way I felt and because I was getting better, well I started
getting a flareup again in May, and I had some predisone and I started
to take that again, well now after at least a cpl of months, I am
really not seeing any improvements, yes at times I feel better, but
then after I eat at times I have to run to the bathroom. Well if anyone
knows of what foods I should avoid that would be helpful. I sure hope
diet will make me feel better. Well thanks for all the help.
Eric
|
| | 5 answers | Add comment |
|
| Steroids affecting vision George Orwell 07:58:33 |
| | I've been put on 40mg of prednisolone daily for UC and my vision
has gone to pot. The optician was baffled and said this doesn't
usually happen with steroids. Both eyes are now about one diopter
more short-sighted.
Has anyone else had this happen when starting steroids, and did
it go away once you managed to wean yourself off them?
|
| | 9 answers | Add comment |
|
| ? for those on asacol Angie 07:30:51 |
| | Did you experience weight gain? I have been steadily gaining weight, and
having even maintaining my weight. It seems to me I gained more with an
increase in Asacol from 4 a day, to 6 a day to now 8 a day which is the best
dose so I am symptom free. I'm going to be 300 pounds soon if this keeps
up.
|
| | 7 answers | Add comment |
Thursday, 10 August 2006
|
| Digestrol - Report #1 (Aug 7th, 06) Brad P 22:57:57 |
| | Hello all
A few weeks ago I was looking for anyone who might have tried Digestrol. Its
suppose to help with IBS symptoms and other gut problems. I am usually
skeptical of these things but a co-worker of my wife's said she uses it and
she can eat foods she normally couldn't eat with Crohn's. Thats the only
thing that made me explore this.
Anywho, I came across a bottle for nothing. Long story. But at least I'd
have nothing to loose out of my pocket. Lately my condition is not too bad,
but slightly constipated, moving stools once every 3 days. Before trying
Disgestrol on Saturday for the first time, my last movement was Thursday and
all looked normal to me. So I started taking 2 a day on Saturday. As
Saturday progressed, I had developed heartburn (I take 2 Pantaloc a day for
heartburn). But I can't blame Digestrol for that yet.
Sunday I was due for a BM, and I did, but my stools were really really dark!
Odd. And I wasn't feeling well all day but sometimes that happens when I
have a hard time on the john. Today, Monday, I had a small BM, and it was
dark again. I have some tenderness around my gut area that turns into slight
cramping...but again, as of now I can't blame Digestrol yet.
I'm going to keep on taking 2 a day for this week and report my results
then.
|
| | 4 answer | Add comment |
|
| to lisa cote Annie 05:40:45 |
| | i did your questionnaire and it bounced where u said to send email
answers...so i sent it to the addy u have on this group...hope u get
it..good luck with your study
annie
|
| | Add comment |
|
| Isotonix Vitamins Tatrick 04:35:42 |
| | I have suffered with Crohns for over 11 years, trying many remedies
with the steroids, Asacol, Pentasa and many other regimens that the
doctors have recommended, but now after 11years I have tried these
vitamins. I have always taken vitamins and they come out as they went
in, so when I heard about these I was willing to give them a try. They
are liquid, immediately absorbed. I have looked for years for liquid
Calcium, the OPC-3 is awesome. Go to ( time4you.unfranchise.com )
check them out, read the details, do the nutra physical I have truly
been amazed. I can go somewhere and not have to seek the bathroom
immediately.
|
| | 6 answers | Add comment |
Wednesday, 9 August 2006
|
| umich hospital query -- Jeff et. al Mzb 15:33:59 |
| | Hi Jeff:
You mentioned some physicians you are seeing.
I am having increased gut problems, mostly pain/C.
I originally found inflammation in the TI, but C has been my big symptom and
so my GI has labelled things IBS.
Anyway, he is retiring and I want to find a doctor who would be willing to
start again with an open mind. You mentioned two physicians. Do you think
they would be willing to do this (I'm hesitant to have one who automatically
zones in one specific dx).
I'm going to call and try and do a self-referral. Any idea how long it takes
to get an appointment and can I request a specific physician?
Can you mention one more time who you think I should request given the above
situation?
Mel
|
| | 13 answers | Add comment |
|
