Newly Diagnosed with Crohns

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Sjane39
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/7/2009 8:40 AM (GMT -7)   
Hi. I'm new to this site and am thrilled to find this panel for support.  I've suffered with Colitis for over 30 years and recently went for my bi-yearly colonoscopy.  I expected everything to be fine because the previous colonoscopy showed no sign of any inflammation and I've been feeling really well.  To my suprise, and my doctors, he thought he saw colitis AND Crohns and both being much higher up by the Ilium.  My colitis was originally in the lower left and was reachable with Rowasa enemas and Contasa suppositories. After sending my blood work to California, I just got word that all my inflammation was more consistant with Crohns, not Colitis.  Of course, I am devastated as I've been controlling the colitis pretty well and now have to contend with worrying about Crohns.  At the moment, I am feeling well (knock on wood) but I'm wondering if anybody else has had the experience of being diagnosed with Crohns after having Colitis for so many years.  And also - am wondering what I am in for and any symptoms I should be on the lookout for to prevent a major flare-up. 
Thanks for any information you can pass on!

catpower
Regular Member


Date Joined Nov 2008
Total Posts : 192
   Posted 1/7/2009 9:13 AM (GMT -7)   
I was diagnosed with Colitis for years before it was changed to Crohn's Colitis. I am glad you are currently feeling well. Just like with Colitis, watching what you eat is imperative to feeling well. Stay away from foods that bother you, as well as foods that have a lot of roughage. Personally, when I feel a flare-up coming on, I switch to an all liquid diet to give my stomach a break and more times than not it helps.
Diagnosed with Crohn's Disease; Meds: Entocort & Asacol; female in late 20s.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/7/2009 9:23 AM (GMT -7)   
Hi Sjane and welcome to Healing Well glad you joined us. As you are new to crohn's most of us here take a B-12 shot for our blood and a multitly vitamin. Some crohn's can be mid ,moderate or severe. I have severe. I follow low roufgage diet and most here are on meds. I too had most my problems in the TI area seems to be a problem area. You will find good support and help here. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/7/2009 9:34 AM (GMT -7)   
Hi Sjane and welcome to Healingwell. I think you just need to continue taking care of yourself much in the same way you have already been doing. Its good you are feeling well. Are you taking any type of maintainence med? I think that is something very important to help keep the inflammation at bay. I too follow a low residue diet. Easy to chew, easy to digest. Crohns in the TI area is one of the most common places for Crohns to appear, although it can be anywhere from mouth to anus. Again welcome and we look forward to hearing more from you!

God Bless
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"*

Sjane39
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/7/2009 1:13 PM (GMT -7)   
Thanks for all your quick replys! I can see I am going to get a lot of info from this list as well as a lot of comforting support! I am currently on Asacol and I have been on a low carb diet for about 4 years which seemed to keep the Colitis at bay without any flare-ups. I started adding more carbs and I am wondering if that started up the Crohns inflamation. I am also going to check into a low residue diet as you have all suggested. Any other advice you can give me is so appreciated! Again - thanks so much! I look forward to hearing from you with your words of wisdom!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/7/2009 1:47 PM (GMT -7)   
Double check with your doc about your inital diagnosis because a lot of people get confused when told they have colitis and the doc isn't clear on specifying which kind, being either ulcerative colitis or crohn's colitis (which is what I have CC)...as you know either form of colitis is treated generally with the same meds, ones that reach the colon (asacol, imuran, ect). UC is limited to the colon/rectom, whereas CD can affect the entire GI tract from mouth to anus and can affect more than one area at a time.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Sjane39
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/7/2009 5:05 PM (GMT -7)   
pb4 - Thanks for your reply. I did have ulcerative colitis before in the lower left side of the colon. Unfortunately, had to have many colonoscopies over the years and always the same - until this past one just a few weeks ago, which was why I was so surprised to hear about the Crohns. Many people are saying to have a low residue diet, a question I have is does that apply to just when there is a flareup or always? After the last colonoscopy my doctor said to have a high fiber diet. Of course, when I had a flareup with the colitis, I always stopped all roughage but went back to a regular diet when I was in remission.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 1/7/2009 5:12 PM (GMT -7)   
sjane, i'd say if the roughage doesn't cause or aggravate or continue your symptoms, then it's probably ok in moderation.
i have CD mostly in my TI, but get patchiness throughout my dig. system anywhere from my mouth to my anus (bad ouch there!).

I'm glad you're feeling well (despite the fact that you are flaring still). I hope your CD will go into a long remission.

Best wishes!

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 1/7/2009 5:29 PM (GMT -7)   
Hi Sjane39 and welcome! In addition to the low residue diet, there are many here like you who do the carb restricted diets as well. We have lots of discussions about the Maker's Diet, the Specific Carbohydrate Diet (SCD), and the Life Without Bread (LWB) diet. As you suggested, I think it's *possible* the addition of more carbs to your diet might have triggered your flare. In any case, the carb-restricted diets are used for both UC and Crohn's, so it's possible you will be fine doing what you are used to as far as diet once you get things under control.

Do you take any kind of probiotic? Many here have positive results with them!

Again, welcome to the forum! Hope things turn around for you real soon!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 1/7/2009 6:28 PM (GMT -7)   
I too think that you should continue to include roughage and fibre in your diet as long as you do not develop symptoms. In fact, you may have hit on something significant when you wonder whether adding more carbs to your diet has caused you to flare. For some people with crohn's, wheat and some other carbs can greatly aggravate symptoms.

With this disease it really pays to be a good detective, especially when it comes to food.
Belleenstein:

30+ years living with Crohn's.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/7/2009 6:31 PM (GMT -7)   
Fibre supplements that my GI suggested I take daily and indefinitely have been helping me a lot with my crohn's colitis and IBS...definitely something to consider unless you have issues with strictures/blockages.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)

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