Hi from a newly-diagnosed crohnie

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g27
Regular Member


Date Joined Jun 2010
Total Posts : 34
   Posted 6/9/2010 9:40 AM (GMT -7)   
Hi all,

Just wanted to introduce myself as I'm new to the forum. I'm 29 and I was just diagnosed last week (!) after suspecting I had it for a couple of years, although I've probably had it 10 years or so. My father had Crohn's (passed away in 2007) and I inherited a lot of his symptoms, so...

My diagnosis was quick once I put the wheels in motion. Got referred from my family doctor in December, met with the gastro in March. Both my family doctor and the gastro said that based on the symptoms I described, they didn't think there was anything wrong with me except maybe IBS, but they agreed it was worth checking due to my family history. I wonder if to some extent they were humouring me, but whatever gets the job done I guess. I had my colonoscopy last Thursday and once I'd woken up enough to be coherent, my gastro came out and told me that yes, I do have Crohn's - not only that, but apparently it's more visible than she expected, whatever that means.

Since I was still a bit groggy at the time we didn't discuss treatment or anything. I've got an appointment to see her next Monday, the 14th, to discuss treatment, the results of the biopsy, etc.

So, that's where I'm at. I have some idea of what's in store but so far that's based entirely on my experiences, my father's experiences, and whatever I can find online.

If anyone has any tips for things to ask my gastro - the kind of things maybe you wish you had asked the first time around - I'd love to hear your ideas!

Gillian
Toronto-ish, Canada

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 6/9/2010 10:11 AM (GMT -7)   
just wanting to say hi n welcome
glad you found us here it is a great community n support is right here
i made sure i asked all my options on meds..their side effects ect
talked about strictures and other issues us crohnies go thru
i think it is best to arm yourself with the questions and a good gi will or should answer plus give you ideas on tx
again welcome n im sure others will b posting to you as well
blessings
lyn
          CO MOD @ANXIETY/PANIC CD AND ALZHEIMERS               
 HV Crohns..pyoderma gangrenosum..anxiety..neuropathy...fibro
                                       deaf
        
    
 

                                    
                                                         
                                  
 
 
 
 
 
 
 
 
 
 
 
 
                                                                                                      


g27
Regular Member


Date Joined Jun 2010
Total Posts : 34
   Posted 6/9/2010 11:01 AM (GMT -7)   
Thanks Lyn! I will definitely be asking lots of questions when it comes to medication! Side effects especially.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/9/2010 11:03 AM (GMT -7)   
My one question is what maintenance med will be using? I am a firm believer in taking meds even when feeling better. The meds help us stay feeling better. Welcome to Healingwell by the way!
Gail*Nanners* Co-Moderator for Crohns Disease 
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"*

g27
Regular Member


Date Joined Jun 2010
Total Posts : 34
   Posted 6/9/2010 6:18 PM (GMT -7)   
Thanks for the tip Nanners! I'll be sure to ask about maintenance meds.

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/9/2010 6:46 PM (GMT -7)   
Welcome!
I would make sure you have a good support system at the GI office. Ask who you will be able to talk to if you have questions once you start your meds. It is frustrating and a waste of time if you can only ask questions during doctor appointments. My GI has a specific nurse that you can reach whenever you have a question or want to discuss your symptoms. She has been a great help!

Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 


g27
Regular Member


Date Joined Jun 2010
Total Posts : 34
   Posted 6/9/2010 8:30 PM (GMT -7)   
Good point, Elizabeth, thanks! When I was at the office for my initial visit I got the impression it's just my GI and her receptionist (who may double as a nurse? I didn't ask), but it's certainly something to ask about as I'm sure I'll have questions outside of appointments.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 6/9/2010 8:38 PM (GMT -7)   
Just wanted to say welcome, and sorry you have CD.

There's a post about questions to ask your GI that's kinda current...try looking for it and maybe it'll give you ideas of what to ask (I can't think of any off the top of my head...getting a little tired, but the post may help you)

Good luck with your appointment!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!


g27
Regular Member


Date Joined Jun 2010
Total Posts : 34
   Posted 6/9/2010 10:16 PM (GMT -7)   
Thanks monkiray, I think I found the post you're referring to:
http://www.healingwell.com/community/default.aspx?f=17&m=1813681

I'm really glad you mentioned it, as this forum is so active that the thread was already way back on the 4th page! Lots of excellent questions in there. I'll have to write up a list to take to the GI. : )

Post Edited By Moderator (Nanners) : 6/14/2010 2:37:14 PM (GMT-6)


g27
Regular Member


Date Joined Jun 2010
Total Posts : 34
   Posted 6/14/2010 1:16 PM (GMT -7)   
Update: Back from the GI's. Turns out the Crohn's is most visible (rated "moderate") in the terminal ilieum - no surprise there - and there's some milder inflammation nearby. Apparently there is also some evidence of Crohn's doing things in my colon although by the sounds of it there wasn't inflamation there. It's all a bit fuzzy now but I think she said I must have had ulcers there in past. She did find granulomas, and the pathologist confirmed with the biopsies, so as far as GI's concerned that's a 100% certain diagnosis.

So now I've got a prescription in hand for Budesonide (Endocort) 9 mg, with a plan to see the GI again in 8 weeks to discuss tapering. I've been told to take iron supplements, as well as supplements for calcium and vitamin D. Had more blood taken today for testing - checking iron again, etc. Going for an abdominal x-ray this Friday, and a baseline bone density scan next Friday.

Off to fill the prescription! From what I understand the Endocort isn't too bad of a drug to be on... she explained that she'd rather put me on that than on Prednisone as the Endocort has milder side effects, or at least side effects that take longer to kick in. I asked about maintenance meds and she said we'd talk about that once we've seen how I do on the Endocort.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8559
   Posted 6/14/2010 1:36 PM (GMT -7)   
Sorry about your Crohn's diagnosis; not really a disease I'd wish on anybody. But on the plus side it seems like you're onto a good start. Entocort is definitely the far better steroid to be on with regard to side-effects. Pred works, but sometimes the side-effects are worse than the disease itself. Also, you never want to be on a steroid for longer than you can possibly help - even Entocort.

Make sure your GI doesn't forget about maintenance meds. Steroids may knock you into remission, but once you stop taking them they stop working. And then you'll need something else to keep the inflammation at bay, hence the term "maintenance meds".

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/14/2010 1:39 PM (GMT -7)   
I agree with NiceCupofTea, stay on your doc about the maintenance meds. I am surprised they didn't start you on something along with the Entocort. Alot of Crohns meds take awhile to kick in so its good to start them at the same time with the steroids. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
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"*

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 6/14/2010 5:45 PM (GMT -7)   
I agree with others here - sounds like a really good start. Good luck!
Official dx September 2007.
currently flaring (June 2010) with colitis
Medications: Pentasa, Omeprazole, Prednisone, 6MP
History of hypothyroid (dx 2004, take Levoxyl), and gall bladder surgery (1997).
47 years old; single mom to three wonderful kids, ages 12 to 18.


Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 6/14/2010 7:31 PM (GMT -7)   

Just wanted to say

Welcome to healingwell

smilewinkgrin  


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 6/14/2010 7:42 PM (GMT -7)   
ask about diet
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc


DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/15/2010 6:04 AM (GMT -7)   
There are lots of discussions and opinions on diet here as JP mentioned. My opinion is that this can be very important. Over the last while I have read lots. Everyone is different and what works for one may not work for you, but in my opinion the subject it is worth looking into. I looked at Makers, SCD, Low Res. For me, if nothing else, I have never eaten a more healthy diet, and it gives me a sense of control.
Take care
David

Symptoms since I was 15 (now 50), 2 “definitive” IBS diagnoses but no treatment except “eat more broccoli, you are not getting enough roughage"..lol, CD in small bowel diagnoses with Pill Cam 06/2010, Kapidex 60mg, Prednisone starting at 40 mg (moving to 30 soon YEA!!), Pentasa 4,000 mg, Amitripyline 10 mg, SCD, Freeda  - Multi Vitamin  & 2000 UI D3,  Melatonin 9mg


g27
Regular Member


Date Joined Jun 2010
Total Posts : 34
   Posted 6/15/2010 7:22 AM (GMT -7)   
Thanks Dave and JP! I did mean to ask about diet but forgot to, so I will have to remember to ask at my 8 week follow-up. Thankfully my symptoms are relatively mild - I haven't really suffered from pain and cramping, etc. to the same extent as many on here - so in the meantime I'm ok with carrying on as I did before. There are certain things I avoid as I know I can't digest them (lettuce, raw carrots, onion, tomato skins, pepper skins, ...), but even then it's not disastrous if I do eat them. That said, I'd be open to some dietary tweaks if they'd help!
Female, 29 y/o, dx Crohn's in June 2010, but probably had it for 10 years prior
Currently on 9 mg Entocort, plus elemental iron and calcium/vitamin D supplements


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 6/15/2010 9:05 AM (GMT -7)   
Another dietary supplement you can add to your vitamin D and calcium and iron is an omega-3. Fish oil is popular and I think a lot of Crohnies feel it is more directly absorbed in an inflamed gut. I choose to take flax seed oil - no fishy burps, no guilt over over-fishing menhadrin and no concerns about mercury. I take a big fat capsule morning and night. There is some good data out there that an omega-3 supplement is helpful for people with inflammatory bowel disease.

The iron supplement might make you feel worse, actually, so if you have more tummy upset and/or constipation than you did before, consider the iron as the most likely culprit.

In my opinion, this illness is not caused by diet. There are plenty of things that upset an IBD gut, but nothing that will make your disease worse in terms of inflammation or stricturing or fistulas. In my opinion. By the same token, there are ways of eating that will make you feel better, but they won't eliminate the inflammatory process either. In my opinion.

Welcome to the forum!
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