Introduction: New to the Board & Crohn's

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Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 2/26/2008 6:02 PM (GMT -7)   
Hello everyone, I've been lurking around the healing well forums for about a month now. I've been waiting to join and post until I had a more definitive diagnosis. I thought I'd introduce myself and provide a bit of background info.

Background:
I've been having issues for about 4 years now (diarrhea, bleeding, pain bloating) and every time I go in things get dismissed as a fissure causing all my problems. Starting in December I had another flare that just wouldn't end (worse than anything I've experienced so far). It stopped for about a week and then started up around the beginning of January. I went into the ER after I started passing mucus, blood and blood clots. The doctor I saw in the ER was quite good and took all my symptoms seriously and even agreed that a fissure wasn't responsible for all the bleeding I was experiencing. He referred me to the visiting surgeon (I live in a very isolated place, specialized doctors are flown up on a schedule). The surgeon did what 2 doctors before him did and completely dismissed me. Once he found out I had anxiety issues he pretty much told me "don't be so anxious, stay away from foods that upset your stomach, here are some stool softeners". He referred me to a GI doctor which was great except for the fact the GI doctor isn't scheduled to be up here until April! I actually asked him if I was supposed to continue with how things were going and he said yes and to just wail until April. *sigh* I made an appointment with another GP and he finally took things seriously and got the ball rolling. He ordered blood tests and made sure I came to see him the next day for the results. My blood levels were fine but I had an elevated ESR rate. He suspected I had colitis and put me on Asacol (2.4g/day) he also spoke to a different surgeon and got me a referral to get a colonoscopy.
Last Thursday I had my colonoscopy (I won't even get into how absolutely horrible the prep was and how difficult it was for the nurse to get my IV in). It turns out I actually have Crohn's. The surgeon took a few biopsies to make sure but he said he's seen it enough to be able to tell me that's what's going on. He also said that my colon and large intestine are completely clear (minus that pesky fissure). I'm now on Pentasa (4g) and Budesonide (not yet on this as my pharmacy has to order it in).
Right now just on the Pentasa things are going alright. I still have some pain (strangely on my left side) and I also have the arthritis symptoms that come along with Crohn's and UC (mainly affects my right hip). Digestively things are better than they were in December/January but definitely not normal.

Most of the people I work with know that I've been sick and seem to be more upset by my diagnosis than I am (ie: "aren't you scared?", "what are you going to do now?" etc). I'm sort of a bit blah about it all right now since I've had these problems for so long. I'm more relived now to find out what's going on and to have a medication that should alleviate some of my symptoms. I'm also a bit angry that the doctors passed me off for so long. Maybe things wouldn't be so bad now if I would've had that colonoscopy 4 years ago.

I think that's about it for me for now.

All the best :-)
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: 4g Pentasa
?? Budesonide (waiting for meds to arrive)

Pre 22/02/08: 2.4g Asacol (discontinued due to Crohn's Diagnosis)


jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 2/26/2008 6:21 PM (GMT -7)   
Well, let me be the first to welcome you! I can't believe your pharmacy doesn't carry budesonide?! This forum is wonderful and I've found so many things out about this disease that you can't find on any website. It is comforting to know you aren't the only one out there and reading about everyone's personal experiences is so valuable. Again, sorry you are going through this, but you have a lot of support!
Pentasa-tapering 1000mg/3x 1/08; Entocort 3mg/3x daily down to 1x 2/08; Percocet/Ultram for pain; Prilosec 30mg; Xanax-ANXIETY; Cymbalta 60mg
Neurontin-tapering, 600mg 3x/day
Probiotic
Ferrous Sulfate 325mg/daily for anemia
Azathioprine 150mg
Currently on a Low-residue diet as of 11/26

I'm so tired, when will this get better?


ALI9
Regular Member


Date Joined Jan 2008
Total Posts : 95
   Posted 2/26/2008 7:19 PM (GMT -7)   

Welcome I can relate with you about how doctors dissmiss you !!!! I bet I went to approx 4 doctors before I gpt properly diagnosed, it was 5 yrs later I had my first colonoscopy. The only good thing is i did have a good GP at the time but never saw i GI for the first 3 yrs. If only I knew now what I didnt know then.

 

-------------------------------------------------

DX: chrons 1987 currently not on any meds have been through them all

Resections x 2 Gallbladder first 1986

Tooo much more to report..............................


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/26/2008 7:22 PM (GMT -7)   
I'm glad they were finally able to diagnose you!! It's good that your crohns is not affecting your colon (large intestine) when and if it does, it's referred to as crohns-colitis which simply means CD affecting your colon (inflammation in the colon)...having IBD (CD or UC) is alot to get your head around but it will come with time...taking a good probiotic is basically essential since we tend to have bacterial over-growth, I hope you don't have any troubles getting your hands on some as they should be taken during flares and remission (basically a life-long thing).

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


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/26/2008 7:29 PM (GMT -7)   
Hello Megera and welcome,

I hope you find great friendship, encouragement and support on this forum.

I can understand why you feel so frustrated with your doctors. It may help you to know that it is unusual for Crohn's patients to be diagnosed quickly. Many of us have also had our symptoms dismissed or overlooked by our doctors, and can relate to the frustration you are feeling.

Welcome and best wishes,

I.
Co-Moderator Crohn's Forum.


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 2/26/2008 10:14 PM (GMT -7)   
Hello Megera! You will love this website, as it is very supportive and informative! I'm glad you finally got some answers and hopefully the meds will start to make you feel better! I have had great results from Pentasa. I know how you feel about being passed off by the doctors for years and what a relief it was to finally find out what was really wrong with me and get the help needed. Talk to you soon.
Shelley
40 yr old wife and mom to two boys 8 & 10
symptoms since the age of 19
officially diagnosed with crohn's Nov.2006
meds: pentasa 500mg 2 x 3day
(just went off Entocort 3mg 2/day)
Surgery booked for Feb.11th- TI resection(stricture)


Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 2/26/2008 10:42 PM (GMT -7)   
Thank you everyone!
I live in a really small and isolated community in the far north of Canada so I guess budesonide is just one of those things they don't have on hand. In my 5 years of living up here that's the only medication that I've ever needed them to order in for me. And whoa, these meds are expensive! I think I'm looking at around $400 for 6 weeks of meds.

I'm also glad to hear that other people have had similar doctor experiences. My mum has been having recurring health problems for around 10 years and is SO relieved that I've finally got a diagnosis since she's still waiting for one herself.

I know there's a lot of talk about various diets and what people can/can't/should/shouldn't eat and a lot of people have problems with vegetables. I'm a vegetarian (around 7 years now) and I'm worried that I'm going to run into issues. Anyone have any experience with this?

Anyone have any good probiotic recommendations? I have some acidophilus capsules in the fridge, is this the sort of thing I should definitely be taking? Is there a certain combo that's better than others? It's funny that a lot of people have the over-growth problem. When I went to a chiropractor 2 years ago he said that my hip problem was due to a yeast overgrowth around my ileocecal valve. He gave me the name of some herbal pills and it fixed me right up! Funny that it turns out that my Crohn's is situated in that area!

Also! (ahhh so many questions!) Does anyone notice that traveling throws them into a flare (or a mini flare?).

Thanks again everyone! I'm relieved there's a place I can come to about all of this because I'm sure my BF and family are sick to death of me talking about it.
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: 4g Pentasa
?? Budesonide (waiting for meds to arrive)

Pre 22/02/08: 2.4g Asacol (discontinued due to Crohn's Diagnosis)


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 2/27/2008 6:24 AM (GMT -7)   
Welcome Aboard. Sorry you have to be here, but you have found a wonderful informative, supportive place.

If you have already been living a vegetarian lifestyle then possibly it won't cause you any problems down the line. Sometimes you might have to be careful what you eat when symptomatic.

My Daughter was diagnosed 8 years ago and actually switched to a vegetarian lifestyle about 3 years after her diagnosis. She found that it set much better with her gut system. Only problem for my Daughter is getting enough protein. She does eat fish. Her most current GI would really like her to get some meat/chicken in her diet to help, but she isn't caving.

Probiotics can be helpful, many IBDers use them. Once you get your Crohn's under control/remission you might find that it won't cause problems when you travel. Travel is my Daughter's middle name. She loves it and finds it therapeutic. It is when the travel is done and over and she is back home that she might get symptomatic.

Enjoy all this board has to offer, which is MUCH!! Hope you get to feeling in wonderful shape soon!

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 2/27/2008 6:46 AM (GMT -7)   
Megera said...
I know there's a lot of talk about various diets and what people can/can't/should/shouldn't eat and a lot of people have problems with vegetables. I'm a vegetarian (around 7 years now) and I'm worried that I'm going to run into issues. Anyone have any experience with this?

Anyone have any good probiotic recommendations? I have some acidophilus capsules in the fridge, is this the sort of thing I should definitely be taking? Is there a certain combo that's better than others? It's funny that a lot of people have the over-growth problem. When I went to a chiropractor 2 years ago he said that my hip problem was due to a yeast overgrowth around my ileocecal valve.


Welcome to the board, Megera!

Since you're a vegetarian, you may want to consider investing in a really good juicer. I bought one online for about $225--an Omega. I can't remember the other brand that's nearly identical. Anyway, veggie juice is so beneficial for everyone, but for CD folks it seems ideal. It removes a lot of the fiber, so you're getting the benefit of all the vitamins and enzymes w/out too much fiber. But if you have no issues w/veggies, don't worry about it. Some folks tolerate them really well.

As for probiotics, there are many good brands on the market. The better brands require refrigeration. For me, I like to see several strains or species of beneficial bacteria. Make sure you buy a potent one, though. The brand I used to buy prior to my son's diagnosis (just for me) had only 3 species and 3 billion viable organisms. Since then, for him we bumped up to 5 or 6 species and 20 billion CFUs (colony forming units). I buy Theralac, but again, there are many good brands. VSL#3 is the most potent available--the capsules have something like 8 species and 225 billion CFUs (don't buy the packets. Some folks report issues w/corn starch used in them). We recently purchased VSL (and used in in addition to his other one) because my son had to take an antibiotic for a bronchial infection. It really kept the antibiotic from messing things up in there for him.

It can sure make your head spin... These are all a bit pricey, but honestly, I believe it to be the single most important supplement my son takes. You can order many of these online if you can't find them locally.

Good luck to you! Again, welcome!
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 2/27/2008 7:56 AM (GMT -7)   
Welcome to Healing Well!  Are you on Ravelry?  Your story sounds familiar from the IBD group.  I'm beckyg1115 over there.

Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 2/27/2008 8:57 AM (GMT -7)   
bektold - yup it's me on Rav too :)

EMom - Thanks a lot for the probiotic breakdown. The one I have right now has 4 species and 6 billion active cells. I guess when these two bottles (~180 pills) are done I'll upgrade to a more potent one. I bought these before I knew what was going on in an attempt to get my hip to stop hurting since it worked the last time.

I'm glad to hear that people think being vegetarian doesn't seem to be a huge deal. I know for sure that if I started eating beef (especially) and chicken my stomach would have a tough time digesting it since it's been so long. I've been toying with the idea of adding fish (tuna and smoked salmon) occasionally but I'm still not willing to give in tongue

I had a mini flare while I was in Australia last year and dealt with it fine (I say mini flare because I'm betting what I just went through was a full flare). We just had to make sure we had access to bathrooms and stuff. Air travel always seems to do funny things to my system. Throws everything out of whack even if it's only a 4 hour trip within the same time zone!
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: 4g Pentasa
?? Budesonide (waiting for meds to arrive)

Pre 22/02/08: 2.4g Asacol (discontinued due to Crohn's Diagnosis)


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 2/27/2008 3:16 PM (GMT -7)   
I just wanted to say welcome! This site is great for obtaining valuable information - and it sounds like you could use it in your isolated situation! That would make this disease that much more challenging...not being able to see your GI in a reasonable length of time if problems occur. That's one thing I've always taken for granted, and you've made me realize how lucky I am to have such easy access.

I'm sure you'll get a great deal of help from people here on this site if any questions arise with your treatment.

Take care for now,

Bev
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