New to Crohn's... have some questions

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Kal
Regular Member


Date Joined Jan 2008
Total Posts : 53
   Posted 1/21/2008 1:56 PM (GMT -7)   
Hi everyone,

So i just got diagnosed with CD last monday, and well I'm scared confused and have not really found alot of information to answer my questions. I'll give a little background, It started in 2001 where i I had blood in my bowel movements (enough to fill the entire bowl) Only occuring once before disappearing and would appear back once yearly. Each time going to the ER or my doctor Anyways I was injured in July at work and have been off since, During Oct/Nov the bleeding started again but lasted during the entire time. New specialist who performed a gastroscopy and colonoscopy and voila diagnosed with mild CD.

I have to say i admire more of the authors here for they're bravery in dealing with the symptoms and surgeries and stuff. I don't know how i'm going to handle it if and when my symptoms become worse. Right now i just have to deal with bleeding, and mild - moderate cramping, w/ upset stomach. Currently my gastroenterologist (sp?) is holding off treatment with medication. I'm going to start seeing a dietician too to help. I also have vitamin B12 shots monthly (for over a year now) as well as iron as I am anemic.

Anyways on with the questions:

Does CD increase over time getting worse? or can i expect symptoms to stay about the same?

What are the warning signs that i should go to the ER or seek immediate medical attention?

I started keeping a diary of bowel movements, symptoms, and diet is there anything else i should be tracking?

Is there anything else i should be doing? Not doing?

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4100
   Posted 1/21/2008 2:18 PM (GMT -7)   
Go to the ccfa.org website (Crohn's website) and read the whole thing. I also found the book, "Crohn's disease and Ulcerative colitis: The first year" by Jill Sklar to be helpful when I was first diagnosed. Also read current and past forum posts on this website. I was diagnosed in September, 2007. I still feel new to this disease with much to learn about treatment options and my own body's responses. This forum has been my lifeline..I don't think I could have coped without it! Welcome, and I'm so sorry you have this rotten disease!!!!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 1/21/2008 2:20 PM (GMT -7)   

Welcome to the group...

you are ahead of me with the diary, I never started one and I know I should. The CCFA site is a great way to learn. they also have local support groups.

 

good luck!

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


Kal
Regular Member


Date Joined Jan 2008
Total Posts : 53
   Posted 1/21/2008 2:30 PM (GMT -7)   
The only reason i started the diary was because i kinda was bombed with health things, and the dietician said she'd need me to record my diet.

July 13, i suffered a back injury at work, compression fracture of the spine with three bulged discs w/ siatic nerve pain, then past monday diagnosed with Crohn's and a hiatal hernia. It's just been one thing after another. Then having to look for a new job on top of it all well it's been a very depressing few months to say the least.

Thank gumby44, and karendee I really appreciate the help.

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 1/21/2008 2:41 PM (GMT -7)   
we all know how you feel...

keep postiive! i am job hunting too and it sucks!

Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 1/21/2008 2:49 PM (GMT -7)   
Crohns disease does not necessarily worsen over time, but the complications that can (bot do not always) accompany it can become mroe seevere and frequent with longstanding disease. Those include fistulas and obsttructions. However, there is a subset of Crohns patients who have fairly steadu mild to moderate disease over their lifetimes with few or no major complications. You may not see many of them on here, but this forum, and others like it, tends to attract the more severe and complicated patients. I was diagnosed much as you were after a fairly massive GI bleed, following some years of symptoms I attributed to an irritable bowel. Now passing 40 years of active disease at age 60 with no surgeries or complications and a steady, fairly low level, of symptoms. So each case is different, and just because you read a post here about some major complications, doesn't mean you will inevitably get them too.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/21/2008 2:58 PM (GMT -7)   
My suggestions for you Kal are, eating as healthy as you possibly can, avoiding fast-foods, processed foods animal fats and caffeine, these can all exacerbate IBD symptoms. Drink lots of water, take a fibre supplement daily (as my GI suggested to me and it's helped immensely) along with probiotics daily as well (both of these should be taken during remission as well as flaring). Start a mild exercise program and increase the regiment when you're in remission or close to it and during flares decrease it to low impact...exercise is super important for normal bowel function and it aids with many other things besides your overall health, issues with bone loss which CDers are prone to and muscle loss as well and fatigue.

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


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/21/2008 5:04 PM (GMT -7)   

Hello Kal, Welcome to HealingWell and the CD forum.  You have met some of the members already, aren't they great?  I like the CCFC site too. Here is the link:  http://www.ccfc.ca/English/info/diagnosed.html.

Also we have a lot of resources on the right hand side of your screen.  You may want to take a look at what is there.

Again a warm welcome to you.  We look forward to getting to know you better.


 
Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


Blue Velvyt
Regular Member


Date Joined Sep 2006
Total Posts : 194
   Posted 1/21/2008 6:16 PM (GMT -7)   
Nice link Kitt, thank you, never been there before.

I hope it's ok to post another link, I went to the wikipedia for crohns and fouond it to be very accurate in relation to my symptoms, not sure if it is accurate for others.

Anyway, hope this is alright, not trying to send false info :)

http://en.wikipedia.org/wiki/Crohn's_disease

mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 1/21/2008 7:19 PM (GMT -7)   
Kal,
Hello and welcome to our family!
My question is why is your dr. holding off on treatment?? Intestinal inflammation caused by CD doesn't go away on its own, in my experience it only gets worse over time if left untreated. I think that researching as much as you can about CD is your best bet and the proper diet can make a world of difference, but if your CD is mild now you really, really need to stay on top of it with a solid treatment paln cuz it could spiral into something ugly very quickly.
Severe abdominal pain, fever, these are signs you should see a Dr. right away. My best advice is to take your disease very seriously and treat it as effectively and quickly as possible. We are each blessed with only one body...
Please take care of yourself and good luck to you!
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)


eljay1066
Veteran Member


Date Joined Jan 2003
Total Posts : 3166
   Posted 1/21/2008 8:00 PM (GMT -7)   
Hi and welcome, kal. Wow, when it rains it really does pour! Give yourself a big pat on the back for dealing with all this. As for predictions, they're impossible. For me, the first year was the hardest, and eventually I had a long remission, for which I am very grateful. Now it's more of a roller coaster, but that's just my story and everyone's is different. The best advice I can give you is to choose a gastroenterologist who listens to you, explains, and treats you with respect; then don't be afraid to ask about anything, whether or not you think it's important. Then take it one step at a time. Good luck and God bless you.
Take care. Lois

Kal
Regular Member


Date Joined Jan 2008
Total Posts : 53
   Posted 1/21/2008 8:09 PM (GMT -7)   
Thank you all, you are a great bunch and a relief in a way, i truely felt alone in this and now i don't.

I'm not sure why my doc is holding of treatment, other than it being mild. The only other thing i can be (and for the record I'm in Canada i know insurance is a bit different in the u.s.) I currently don't have any benefits or drug plan coverage, plus being off work i really can't afford the medication. So i think it's a combination of that. I have to thank you because that's one of the questions i'll be asking next time around is the point you brought up in managing it. So far i have orders to have a reduced fiber diet and take B12 & Iron supplements which i had been doing (apart from the diet) before being diagnosed with CD because of the huge deficiencies in those areas.

Thanks for the links all!

So what medications are good for mild cases in your experiences. the drug that my doc brought up was Predinsone (sp?) but what i've read on drug info sites makes me wary about it...
Kal - 24yr female
Jan 2008 diagnosed with hiatal hearnia, and Crohn's
Meds: B12 Injection, Iron supplement.


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 1/22/2008 3:17 AM (GMT -7)   
Hi Kal,
Welcome to HealingWell. This is a very outstanding site. You can ask questions about anything. Make yourself at home.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/22/2008 10:54 AM (GMT -7)   
Kal I was also worried about the meds. I am on prednisone and slowly lowering my dosages each week.. I started at 60 and i'm at 50 this week. I haven't noticed any bad side effects yet. I wish you the best of luck in your treatment plan.

Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 1/22/2008 11:07 AM (GMT -7)   
Hi
mcleaver 1969 wrote:
"My best advice is to take your disease very seriously and treat it as effectively and quickly as possible. We are each blessed with only one body...
Please take care of yourself and good luck to you!"

I guess he means the most common treatments like prednisone, imuran and so on. I have another suggestion: There is a medicine, called naltrexone, a lot of people use it in a lower dose, only 4.5 mg each night. Naltrexone has been given to block the opioid receptors in addicted for app. 30 years. They get 50 mg per day. All of us others with auto immune diseases like Crohns, Ulcerative Colitis, Multiple Sclerosis, Reumatoid Arthritis, Lupus and a lot of other autoimmune diseases uses only 4.5 mg each day. It's almost a homeopathic size (really minimal doses) on the medication.

This treatment is to be taken every day all the year, and you can't mix it with the ordinary medications rx for Crohns disease. Low dose naltrexone is said to make a balance within the immune system, it does so by blocking the endorphine production some hours early in the morning (before 2.00 am) and tricking the body to produce more endorphins than usual. Our immunsystem will then get higher and better and directly influence the health by attacking the cells that is making the inflammated guts or in other diseases, the inflammated areas.

I have Crohns. I got my diagnose in june last year, I got prednisone for three months, and then I started low dose naltrexone. LDN. I use no other medication. This medication, that is used in treating humans for 30 years in bigger doses than ours, is a medication making almost no side effects. The side effects usually is:
insomnia (some), tiredness (less) and vivid dreams (some), the side effects fade away after 10 - 30 days, sometimes a bit longer. Some wake up in the middle of the night having some more energy that is usual at that time :-) ...All side effects that low dose naltrexone brings is going away quite soon. This should not frighten anyone, this is just a piece of cake...

The medication is a typical off label medication, that means that the doctors do write rx to a group of patients that it's not approved for. FDA has not approved it for all of us with auto immune diseases. But then remember: 50 % of the doctors prescriptions are off label prescriptions. For example: Humira is not approved at FDA to use for Crohns. It's a medication thats FDA approved for reumatoid arthritis. Still there is a lot of Crohnies using it.

If you just have got your diagnosis and your symptoms are mild, I would like to suggest LDN for you. I guess that you are not using pain meds containing narcotics. If you are, you have to taper off those before starting with LDN. LDN is not to be used with no painkillers containing narcotics. It is not to be used with immune modulators, immune suppressors and those medicines. Asacol is allowed to be used w. LDN.

I got rid of all my symptoms within 14 days. The first day all the bloating was gone. My swelled feet, the cramps in my feet and legs, my red eyes, my daily abdominal pain, my diarrheas, and my vomiting and obstructions disappeared within two weeks. I was considered as having a mild Crohns even if I had obstructional problems as a severe part of the disease. (Cramps, vomiting for 8 hours....the fibrous foods made stop in an inflammated, narrowed patch of the intestines).

Almost 4 months now since I started. I am even getting better and feeling really good every day.
My GI tells me to continue using the medication. He says this is SO interresting. He is going to discuss this with his colleagues to ask what they think. I have no other medication. I haven't had one obstruction episode since I started using low dose naltrexone.

If any of you wants to learn more: go to yahoo and registrate, make your own email adress there, you'll get a lot of posts every day. The group that is the most active has over 5000 member. Newbies arrives every day. Some are lurkers, never writes anything, they are as welcome as the other. But they read and learn about a lot of auto immune diseases that suits for LDN. You need to stay there and read every day, there is a lot of postings. You are also able to search amongst the posting only for Crohn LDN.
The name of the group is lowdosenaltrexone. If you register and just wants to lurk to read, noone knows you are there. People there are friendly and answers every question there is.

P.S: I don't get any money to tell you about this.
to visit a site explaining more:
www.gazorpa.com
here is descriptions what to ask and tell your doctor. The most doctors are not familiar with LDN. You will be the one that has to tell your doctor. In my country 200 doctors are prescribing LDN now. In US a lot more.

Good luck to you,
best wishes
Ingrid


 
Diagnosed CD June 2007. Have only used prednisone. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. LDN is super! I am now in remission ;-)

Post Edited (Skjura) : 1/22/2008 11:13:25 AM (GMT-7)


Kal
Regular Member


Date Joined Jan 2008
Total Posts : 53
   Posted 1/22/2008 6:46 PM (GMT -7)   
Thank you so much everyone, and thank you Ingrid, I'm going to make a note of asking him about naltrexone.
Kal - 24yr female
Jan 2008 diagnosed with hiatal hearnia, and Crohn's
Meds: B12 Injection, Iron supplement.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 1/22/2008 8:17 PM (GMT -7)   
Just adding my cyber-voice to the welcome chorus. Welcome to HealingWell but so sorry another has to join us.
In the old days, after you were diagnosed, the better docs would tell you to join a local support group. Well, some of those groups were great ( my first was a life saver!) & some were fly-by-nights that faded away. Lucky for us, there is now this site in Cyberspace where you can ALMOST always meet & discuss IBD anytine 24/7/365. I hope we can continue to be a help to you!

Sincerely,
Matthew
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