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OzCrohnie
Regular Member


Date Joined Jan 2010
Total Posts : 61
   Posted 1/2/2010 9:23 PM (GMT -7)   

Greetings all,

I thought I'd say hi and tell you a little about myself seeing as I just joined last night.

 

I'm 22 (male) and was diagnosed with Crohns at 13. Over the last five years I've been trying different medications which all seem to work for awhile and then stop. My doctor had been telling me for awhile that we were running out of medications to try and will be looking at a bag in the future.

 

When my doctor first mentioned getting Infliximab infusions, I thought to myself "no way, I’d rather suffer then go to hospital all the time for infusions". How wrong I was, I loved going to hospital, the nurses were really nice, gave me time to catch up on reading and those first few times that I fainted just gave me some funny stories to tell people! tongue 

 

After Infliximab infusions stopped working I moved on to Humira. I've always hated needles and felt ill at the idea of giving them to myself. Daunting at first, but now it’s not so bad! Especially seeing as I get to gross a few of my friends out who hate needles just as much as I do.

 

After Humira stopped working, I was told to seriously consider getting a bag. Originally I thought I'd rather just take tonnes of loperamide and be on prednisone and deal with the consequences later on down the track. But now, I'm booked in to have my large intestines removed and get a permanent bag in 4 weeks... and I'm actually kinda excited about it! (I have a few questions and worries though, but I'm sure you guys will help to answer them in due time). 

 

 

*Sorry I have had to remove your signature.  Please go into control panel and modify your signature.  We have folks as young as 13 on the forums and must be respectful to all.  Please change it to "stuff" happens.  Sorry!*

 

I'll post my questions in the appropriate places soon, but for now I’m just happy that I’ve finally found a Crohns forum that actually has a lot of members, posts and interesting discussions going on!

 

 

Just a little Warning:

I've been told my (facebook) comments are like emails, and my emails are like essays. There is some truth to this; my largest email to date was a little over 3,000 words long and they are generally over a page long. They are usually really big as I just write down whatever comes to mind, but I’ll try to keep my comments on this discussion board pretty small for you guys.

 

Post Edited By Moderator (Nanners) : 1/4/2010 7:48:37 AM (GMT-7)


LittleSisSmurf
Regular Member


Date Joined Apr 2006
Total Posts : 164
   Posted 1/2/2010 10:59 PM (GMT -7)   
hello there. you just described me! lol Except im 37 and just started the arrangements to getting an ostomy bag. I know it has its ups and downs as well, but the one thing that comes up over and over again..is the relief of not having the urgency... Im kinda excited for that. I hope ur surgery goes well. If you scroll up to "forum quick jump" u'll find the ostomy forum. Ive found it great for preparing myself mentally. Good luck again. Wish u all the best


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/3/2010 5:58 AM (GMT -7)   
Welcome to the forum, I hope your surgery goes well.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

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


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 1/3/2010 7:38 AM (GMT -7)   
Welcome to the forum! Definitely check out the Ostomies forum...there are many Crohnies who have had the same surgery!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/3/2010 8:26 AM (GMT -7)   
Welcome to the Crohns forum. So glad you found us, but sorry you have to be here. Look forward to hearing more from you.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 1/3/2010 8:35 AM (GMT -7)   
Hello & welcome, sorry that your disease has brought you to this point, but there are so many people with colostomies,
that even if they were given the chance of reversal, they just don't take it.

Good luck with your up coming surgery :)
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 1/3/2010 8:41 AM (GMT -7)   
Hi and welcome! yes this is a great site very informative and friendly,so glad you found us, also as OHIO76 said checkout the ostomies forum i use that one as well and have had loads of tips with coping with my ileo speak soon Bev x smilewinkgrin smilewinkgrin smilewinkgrin
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.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 1/3/2010 5:05 PM (GMT -7)   
OZ,what perfect ,favorite quote!
Good luck with the surgery and keep us posted!
I'll agree with you on enjoying your infusions at the hospital.
Hey maybe you could send some Loperamide (candy)my way.YUM.
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Fluconazole.More over the counter vitamin-D. Remission since surgery and 5-years, of 8-week Remicade.
.


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/3/2010 5:32 PM (GMT -7)   
Welcome OZ from another newbie! Good luck on your surgery!
Male with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003.Had a gall bladder removed Nov. of 2009. Currently on 5-asa Salofalk ,Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. Entecort, Imuran and Prednisone in the past.


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 1/3/2010 6:13 PM (GMT -7)   
Welcome Oz. This is a great place. I had my permanent ileostomy surgery last Aug and can say finally feeling good about it. You seem to have right attitude. Ostomy forum can help lots too.

Good luck
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


OzCrohnie
Regular Member


Date Joined Jan 2010
Total Posts : 61
   Posted 1/4/2010 1:27 AM (GMT -7)   

Hey thanks everyone! Hope your surgery goes well too LittleSisSmurf. I just had a quick look through that Ostomy forum and it looks great! I think I'm definitely going to be spending some time in there these next few weeks!

 

And yes I love that quote! Besides the relevance to my Crohn's, it's my way of saying how sometimes in life bad things happen and there is nothing that can be done about it. By accepting that '**** happens' it's allows me to better deal with it. :-)

 

 

*Sorry I had to edit your post, we have children as young as 13 on these forums and we have to be respectful of all, thanks for your understanding*

Post Edited By Moderator (Nanners) : 1/4/2010 7:45:59 AM (GMT-7)


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 1/4/2010 4:03 AM (GMT -7)   
Lol I think your quote definitely speaks volumes to most of us Crohnie's!! Sorry you had to rock up here but these forums are really the best place you can be, good luck with the surgery and here's hoping it gives you your life back - I've heard so many positive ostomy stories and heres hoping yours will be one of them!
 
 


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 1/4/2010 11:54 AM (GMT -7)   
Welcome..i know you will find great support info and the ppl here are da best..stay with us..lyn
                          
                                Co Mod for Crohns, Anxiety/Panic, Alzheimers
   Crohns..Pyoderma gangrenosum,..Anxiety / panic..Fibromyalgia,,Neuropathy...Deaf...Seizures
 
                        I DONT COMPLAIN...OTHERS ARE WORSE OFF THAN I AM                                   
                                                     .....LYN.......
                                Donate to..www..healingwell.com.
                                                    
                             No BETTER GIFT than FRIENDS N FAMILY                                               
                            Happy Holidays from my home to yours
                              
 


flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 1/4/2010 4:36 PM (GMT -7)   
Welcome to the forum! Best of Wishes and a speedy recovery for your surgery!
Flowery
 "Get busy living or get busy dying"
Dx in 2005 with Crohns after a Hysterectomy. Re-section in 2006...came apart so got to do it again! Frequent Kidney stones and Shingles... a new present as of 08-09 Diabetes Type 2. Total of 12 surgerys.
Imran, Asacol, Colestid, Bentyl, Lamotil, Paxil, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!
 
 
               
                        


OzCrohnie
Regular Member


Date Joined Jan 2010
Total Posts : 61
   Posted 1/5/2010 1:35 AM (GMT -7)   

Thanks everyone for welcoming me and the positive thoughts! This place will definitly be a great source of encouragement in the future! :-)

Nanners said...

*Sorry I have had to remove your signature.  Please go into control panel and modify your signature.  We have folks as young as 13 on the forums and must be respectful to all.  Please change it to "stuff" happens.  Sorry!*

The word in my quote that you find disrespectful is in fact perfectly acceptable here in Australia. Obviously what is considered acceptable language differs from country to country. I guess I'll just have to get used to the fact that this is a forum used and moderated by people from different countries and cultures who will have opposing views of what is acceptable or not.

I didn't change my quote in the signature as it would have lost its meaning. Plus a person can't change the wording of their 'favourite quote', as it would essentially not be their favourite quote anymore tongue. So instead, I have removed the quote and put a link to a Wikipedia article about my quote in the signature instead. Hope this is acceptable??


Male, 22, diagnosed with Crohn's at 13.
Medication: Salofalk, Infliximab infusions, Humira injections.
On and off Prednisone for years.
I pop Loperamide (aka Gastro-Stop) like candy!
Have had one, two, three, four colonoscopies.
Getting a (permanent) bag in February!
Favourite Quote:  Unfortunately my quote (while perfectly acceptable in Australia) contains language that is considered unacceptable in some countries outside of Australia. I guess that's what happens when you comment on a forum used by many different cultures. So I've provided a link to the Wikipedia entry for the quote instead.


mthboards
New Member


Date Joined Dec 2009
Total Posts : 18
   Posted 1/5/2010 2:02 AM (GMT -7)   
Please dont! get the surgery until you try high does vitamin D3 must be d3 not just D.
I was on all the medications and they all stopped working just like yours did.
Started taking 5000 iu a day and all my bleeding stopped in 3 or 4 days this was when I was about to be put in the hospital again.
6 months now and I have been taking 10000 iu a day.
I can eat anything and everything I want now, its god darn great!
Im going to get tested to see where my vitamin d level is and Im hoping its low because I want to take more.
Please please please dont do that surgery till you try it.
Hewlettthomas@mac.com

OzCrohnie
Regular Member


Date Joined Jan 2010
Total Posts : 61
   Posted 1/14/2010 5:57 AM (GMT -7)   
Ha yer I think I'd prefer to trust the medical advice I have gotten from my current and previous gastroenterologists and my surgeon over you. Besides, I live in Australia, on the coast, I get plenty of sun :p
Male, 22, diagnosed with Crohn's at 13.
Medication: Salofalk, Infliximab infusions, Humira injections.
On and off Prednisone for years.
I pop Loperamide (aka Gastro-Stop) like candy!
Have had one, two, three, four colonoscopies.
Getting a (permanent) bag in February!
Favourite Quote:  Unfortunately my quote (while perfectly acceptable in Australia) contains language that is considered unacceptable in some countries outside of Australia. I guess that's what happens when you comment on a forum used by many different cultures. So I've provided a link to the Wikipedia entry for the quote instead.

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