can anyone help me

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New Member

Date Joined May 2009
Total Posts : 2
   Posted 5/7/2009 1:43 PM (GMT -6)   
Im Gemma im 30 and i have a little boy who is 2 and a half i was diagnosed with crohns years ago after a colonoscopy i started with the consultant at my local hospital he placed me on steriods and asacol which i took although i was ill the whole time with constant vomiting i finished my corse of steriods and the consultant though the vomiting would stop but it continued getting steadly worse i spoke to my gp and he thought i should stop with the asacol and go back to hospital which i did but the consultant told me asacol was the only thing he was prepared to prescibe to me i found this odd and upsetting but my gp just refered me to the next closes hospital. where i was put on pentasa and told its not out of the ordinary to have such a reaction but i have struggled with pentasa still getting bouts of extreme sickness and they only reduce my bowel movements im still in a great deal of pain a lot of the time and as i said i know have a little boy and i feel his life is being affected so much my mum has been a god send but she has just been diagnosed with bowel cancer and i cant keep being ill like this does anyone have any suggestions on how to speak to my consultant about this as i have always felt very fobbed off by them
Thank you Gemma

Regular Member

Date Joined Feb 2009
Total Posts : 161
   Posted 5/7/2009 1:54 PM (GMT -6)   
Is there any way you can get in to see a specialist in IBD? A specialist will have much more knowledge about crohn's than a regular consultant.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/7/2009 2:13 PM (GMT -6)   
I agree with Orngie, you really need to get in with a gastroenterologist. Sounds like you would do better on another med.

Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Feb 2009
Total Posts : 128
   Posted 5/7/2009 2:42 PM (GMT -6)   
Hello Gemma,

May I ask what country you are in, and what might limit you from pursuing another doctor? Asacol and Pentasa vs steroids are on opposite sides of the spectrum. Steroids offer an immediate effect, whereas Asacol and Pentasa are known as maintainence drugs. You take these when you're feeling alright and it will help keep you that way. There are a lot of other methods and medications out there, it just sounds like you are with a personality that is unreasonable.

When I first started high school I was in terrible shape, and my doctor put me on mercaptopurine. Worked wonders for me, and then for some reason a new doctor (I had moved to go to college) decided to take me off of it, she didn't want me to keep taking it. I should have gone to a new doctor immediately. I still think about that, because it started me down a cycle of illness I've been fighting ever since. Don't let someone dictate your heatlh to you!!! I know it feels hard when they have letters after their names, but you know your body more than they ever will.

Prayerfully yours, ExJohnson
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 5/8/2009 7:20 AM (GMT -6)   
Hi Welcome to Healing Well If you are not doing any better on your med talk to your DR. usually they give you a bit of time to see how yhings are working.. sorry your Mom is not well and it must be a stressful time for you.. where is your crohns located? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~

New Member

Date Joined May 2009
Total Posts : 2
   Posted 5/10/2009 1:29 PM (GMT -6)   
im in the UK. i spoke to my consultant on friday i went in determined to get some answers he saw my weight loss and agreed that the pentasa are not the drugs for me so he has written to my doctor to put me on a 6 week course of steriods and then see how things go but i dont have another appointment until 13th od november so i guess i just have to hope for the best until then
Thanks for all you replies
Gemma x

Regular Member

Date Joined May 2009
Total Posts : 20
   Posted 5/10/2009 1:46 PM (GMT -6)   
Hi Gemma,

I just wanted to say good luck and I hope that the steroids work for you this time. If they don't, keep on at your doctors until they give you a better treatment. Please don't wait until November if you're still suffering next month.

I was in the same boat as you a year ago. My son is just a little older than yours and for several months I would just put the TV on and let him get all his toys out as I was too exhausted to play with him or take him anywhere. I either wanted to sleep, or was in the bathroom. I ended up sending him to a preschool and I actually went back to work (easier than chasing a 2 year old) - I think that preschool is a great option if you can afford it. Hang in there!

Also, have you tried taking probiotics yet? A lot of people find that their symptoms ease up with consistent use of good probiotics (often in combination with other drugs).

Veteran Member

Date Joined Jan 2009
Total Posts : 829
   Posted 5/10/2009 2:14 PM (GMT -6)   
gemaidie said...
im in the UK. i spoke to my consultant on friday i went in determined to get some answers he saw my weight loss and agreed that the pentasa are not the drugs for me so he has written to my doctor to put me on a 6 week course of steriods and then see how things go but i dont have another appointment until 13th od november so i guess i just have to hope for the best until then
Thanks for all you replies
Gemma x

That is a long time :S
Why don't you have an appointment sooner ?
Is the health care in UK this bad ? Or is it maybe to expensive for you :S I see my docs once a month and I would never just let them fill me up with steroids and have no plan for me.
Steroids are good but you cant rely on them with out any treatment plan.
Don't you have a specialist in IBD?

What about Remicade, Humira, imurel or 6mp ?
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ ~

Regular Member

Date Joined Feb 2009
Total Posts : 269
   Posted 5/10/2009 4:19 PM (GMT -6)   

Hi Gemma

I too am in the UK. When I am in a really bad way, certainly when I have been on steriods I see my consultant roughly every 6 weeks. When I doing ok I see her every 3 months. I have her secretarys tel number and can ring if I become bad and need to see her, I did this once a week before Xmas and she saw me on the 2nd Jan. I cannot believe that they are leaving you until November, that is unaccepatable.  Your local GP if anything like mine dont really have a clue when it comes to treating crohns. It takes a while to find out the best course of treatment for you, and some of it is trial and error. Crohns is not predictable.

I think you should get back in touch with the hospital and voice your concerns, Say you are not happy to wait until November.


Good Luck



Diagnosed 2005.
Current medication  -  infliximab infusions, ranitidine, ferrous sulphate, Vitamin B12 injections, asacol

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 5/10/2009 10:57 PM (GMT -6)   
Can't your doctor write the prescription without an appointment??? It's not like they are going to decide your treatment when they see you. Try suggesting that to the doctor's receptionist.
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