My New Gastro! Yay!

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Veteran Member

Date Joined Sep 2005
Total Posts : 769
   Posted 6/11/2009 4:35 PM (GMT -7)   

Hello everyone, I hope you’re all well.


Thought I’d give a little update on my saga. As you might remember I’ve had crohn’s for 4 years, and in nov of last year developed a peri-anal abscess which had me in hospital for a week, and eventually left a fistula. The fistula became infected again and again, and I pleaded with my gastro to give me a referral to a surgeon. He told me he was going to ‘wait and see how many times the fistula because infected’ before giving me a referral. So when it becoming infected for the 3rd time I took things into my own hands and found a great colo-rectal surgeon, who inserted 2 setons. At my follow-up one month after the setons were inserted it was found the abscess was gaining speed again and becoming more septic (and extremely painful). So I had a second surgery and had a catheter ‘mushroom’ drain inserted.


My fabulous colo-rectal surgeon (who specialises in IBD) referred me to a gastro and I had my first appointment with him yesterday.


He spent almst 2 hours talking to me, learning about my history, my family, my background, how crohn’s affects my life, relationships – EVEYRTHING. He was absolutely furious at the way I had been treated by my last GI. He said he sees patients like me mis-managed by bad GI’s all the time and it makes him furious. He told me I have been living with an extreme and very aggressive form of crohn’s for 3 years and this should not have happened – I have been mis-managed by a negligent GI who is an endoscopist more that a gastroenterologist, and makes his money performing these procedures – NOT looking after the well being of his patients.


I had never been offered any medications other than steroids and pentasa. And I should have been on better medications.


I am now set to take my first dose of imuran tonight before bed, and I am in the process of applying for a medication which he says works well in conjunction with Imuran. I’m not sure what this other med is called, but I have such faith in this dr I know he is going to do the right thing. I have to keep a diary of my croh’s every day, and I got blood tests, x-rays and am set to get an MRI of my pelvis so he can see if there are any more pockets of sepsis before starting thus new medication.


I am just so RELIEVED and grateful to this brilliant man! To finally receive proper treatment for this disease is just amazing. He is an IBD specialist gastro and does a lot of research and is one of the leaders in the field in Australia. Finally, I feel like things are going to be managed! He puts his patients first and is so concerned about their wellbeing, he gave me his direct line, and his nurse’s direct line and told me to put them into my phone and call if anything is wrong. He said there is no reason I should have to be in pain – and while trying to finish uni, work full time, manage relationships etc – he actually understands! Thank god for doctors like this!


Sorry, I just wanted to share my joy at finally being managed properly and getting proper meds after 4 years of hell!!

Forum Moderator

Date Joined Nov 2003
Total Posts : 7121
   Posted 6/11/2009 6:47 PM (GMT -7)   
I recall the first time I had an appointment with my current GI, a well respected IBD specialist. I had gone to him after my first GI spent 9 months and over $52,000 to tell me that I was "an enigma." He never prescribed anything that dealt with the symptoms I was having.

After my appointment with my current GI, I walked to my car and sat in it, in the parking structure sobbing in pure joy and relief at finding someone that "got it" and offered some hope at having a life. I totally understand your happiness!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

Regular Member

Date Joined Nov 2007
Total Posts : 147
   Posted 6/11/2009 7:23 PM (GMT -7)   
Isn't it amazing the difference a good doctor can make? My former GI basically pulled the "you don't look sick" card on me and told I needed to manage my stress and hormones better. UGH. I am thankful that I have doctor who actually listens to me now and does the appropriate tests. Since leaving my former GI a little over a year ago I have diagnosed with IBD and a non functioning gallbladder. Yeah clearly it was all in my head. I too remember walking out after my first appointment with my new GI and breaking into tears as I finally felt there was hope.

Veteran Member

Date Joined Sep 2005
Total Posts : 769
   Posted 6/11/2009 7:30 PM (GMT -7)   

I guess its just one of those life experiences – you learn to never take things at face value and always question everything. I, like all newly diagnosed crohn’s patients, was at a complete loss at what to do when diagnosed, and it wasn’t until I was so badly neglected that I ended up in hospital twice, that I thought ‘enough’s enough’! its almost like we have to really suffer before realising we aren’t being treated properly. Very sad.


I am just overjoyed; I feel like my life is going to be given back to me after it was stolen away these last few years. Finally, some answers, some direction! I’m sad to see how much damage it has already done to my young body, but can only look forward from here… I look forward to remembering what it is like to feel ‘normal’ and healthy

Regular Member

Date Joined Apr 2008
Total Posts : 289
   Posted 6/11/2009 9:19 PM (GMT -7)   
Yay! Reading your posts (Phoebesky, Veebo and Ides) made me smile and feel very happy for you!
I didn't feel mis-managed, but I do think my Drs were stumped. I am glad he referred me to my current GI, I've had some ups/downs, but at least I have hope, too....
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry......I'd much rather laugh.
2001 Dx'd with UC.  No remission.  No improvement with Remicade.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returned after resuming 6MP.  Changed maintenance med to Methotrexate (MTX) and had great results with IM injections.  Nausea and symptoms returning with oral MTX.  Switched back to IM injections and am slowly improving.

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 6/12/2009 5:12 AM (GMT -7)   
I am so happy for you Phoebe!!!! It is so wonderful to have a Doctor who is a partner is battling this DD!!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 6/12/2009 6:10 AM (GMT -7)   
That is awesome news Phoebe~now hopefully you can get on the road to feeling better.

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"*

Veteran Member

Date Joined Jun 2005
Total Posts : 981
   Posted 6/13/2009 6:44 AM (GMT -7)   
That is good news Pheobe, Im happy for you. Can I ask who your new GI is? Just curious since I have had lots of dealings with the top specialists and crohns research docs in brisbane as well, they said my crohns was one of the worst cases they had seen in a while. Have u had any of your bowel removed? So glad u feel as though your life is on track. take care, stay well

Veteran Member

Date Joined May 2003
Total Posts : 9448
   Posted 6/13/2009 1:04 PM (GMT -7)   
CONGRATULATIONS, Phoebe!!! HOW WONDERFUL! If only all crohnies could be so fortunate!! And thank you so much for sharing your good news w/us. It should give others hope and faith that there ARE good gastros out there!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 6/14/2009 12:55 PM (GMT -7)   
Congrats on your new doc, I hope you feel better soon. :-)
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 6/14/2009 1:33 PM (GMT -7)   
So glad you have found a good doc im sure he will sort you out Bev x yeah yeah
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma
 No maintance drugs as such on B12 shots,iron syrup,loperimide, 20mg EScitalopram 4 anxiety.

Veteran Member

Date Joined Sep 2005
Total Posts : 769
   Posted 6/14/2009 4:00 PM (GMT -7)   

Hi Andorable, my new gastro is called Dr Radford-Smith, at the royal Brisbane. Have you heard of him? He does a lot of work in raising awareness of Crohn’s and works with the crohn’s and colitis association of QLD, something I hope to help out with once I’m better.


I haven’t had any of my bowel removed thank god. But it seems I have a pretty aggressive form of the disease L or so I’ve been told. Its been left to run rampant in my system for the last 4 years, I just hope I can stop it in its tracks.


The imuran seems to be ‘going down’ ok – apart from some nausea and extreme tiredness!



..... I agree - a Crohn's 'good news story' is always a nice thing!

Veteran Member

Date Joined Jun 2005
Total Posts : 981
   Posted 6/15/2009 2:13 AM (GMT -7)   
Hey Pheobe,
Yes I know Dr Radford-Smith well, he is the doc that has been involved in my case now for a few years along with my gastro up here on the sunny coast.He is an excellent Doctor, you are in good hands. You are very lucky you have avoided major surgery so far and hope for your sake it stays that way :-). I am still trying to come to terms with having an ileostomy, and had hoped it would keep the disease at bay but am suffering with the good old aching bones, mouth ulcers and eye problems. Its a nasty disease. Stay well and so glad u have a great GI now. Keep us posted
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