Newbie here- HELP

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Mrs M
New Member


Date Joined Mar 2009
Total Posts : 14
   Posted 3/26/2009 1:41 PM (GMT -7)   
Hi I have just returned home after a 6 day stay in hospital...they have dx me with cronh's disease I am devastated. its such a long story but just quickly I have a 3yo ds and wanted another so had 5 IVF attempts within 1year period I miscarriage and then last month had an ectopic pregnnacy surgery and had to have a tube removed, anyhow from then on I had heartburn and indigestion we went on holiday to thailand I ended up in hospital 3 times...when I arrived home I went to see GP who said it was heartburn due to stress and she checked for H Pylori  which it turned out to be so after q week of antibiotics I started feeling worse indigestion etc...so went to see GI (gastro dr) he did a Endoscopy on the monday and by the wednesday I had pains in my lower right side I went to ER on the Thursday and they gave me buscapan and said see GI DR but on the Friday pains getting worse so went back then they decided that it was my tubes that was the problem...and I was admitted to hospital anyhow gyne dr said nothing to do with tubes must be Gastro problem well I have had numerous tests and CT scan showed inflamation of lower intestine....then they narrowed it down to TB or CD today the dr told me I have Chron's disease I am devastated I have spent the past several hours here reading and am petrified of whats ahead of me...I had an colonoscopy and they had to give me 2 enemas on monday and yesterday I had to have another and now tonight I feel so banged up its unreal....but my Gastro dr told me I could come home and never even gave me any information about the disease all he said was a low fat diet and no milk products......I have so many questions I don't know where to start they have me on pentasa 500mg ciprobay 500mg Pantaprazole 40mg...I don't know what to do should I take otc meds for the constipation when I said to him will I have to keep coming back for enemas for BM he said no eat bran.....this Dr was so unhelpful it was unreal...he said the blood test showed CD and that he was waiting for the biopsy just to confirm it....please PLEASE can anybody show me some light at the end of the tunnel....how long do 'episodes' last for? should I get a 2nd opinion? I have lost +2kg in the past 2 weeks I can't afford to lose anymore please can anybidy help what is bland food to eat now and also what is lactose free...I would really appreciate some information and support. looking forward to getting to know you all.
 
Mrs M

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/26/2009 1:51 PM (GMT -7)   
First off Mrs M welcome to Healingwell. One thing I want to tell you is this not a death sentence. I have had this disease for over 33 years and if it gives you any comfort, I believe I have had more good days than bad. Once you get the confirmation that it is Crohns from your biopsies, I would look for a different GI. This guy you have now sounds worthless.

Diet is important, but also is a very individual thing for each person. I would recommend keeping a food diary to keep track of which foods upset you and those that don't. I personally live on a low residue diet. Easy to chew, easy to digest. Some folks have success with the SCD or Makers Diet, but these diets aren't for everyone. You can google low residue diet, SCD Diet or Maker's Diet for information on these diets. Lactose free means no milk products.

As for the constipation, most of us have diarrhea, but I like you suffer with more constipation than anything. I take stool softners each night to keep the stool soft and make it easier to pass.

Also, many of the folks on this forum are sicker than most. The other folks with Crohns that don't post here are doing well and getting on with their lives. You will not have all the problems that some of the people on this forum do. For example, I have never had a fistula, but I have had strictures.

Keep coming here and asking questions. We have alot of wonderful and supportive folks on this forum.

Good luck,
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"*

leabug
New Member


Date Joined Mar 2009
Total Posts : 6
   Posted 3/26/2009 1:58 PM (GMT -7)   
Hi Mrs M,
I'm so sorry to hear you had such an unhelpful doctor. Finding out you have Crohn's is tough enough on its own!

Are you going to be continuing to visit this gastro? Crohn's requires pretty regular monitoring, so you do need a regular GI to visit. If you're continuing with this dr, you can always book an appointment to talk to him some more about what he recommends for you re: your treatment plan.

Unfortunately, Crohn's 'episodes'- we generally call them 'flares'- can last quite some time if they don't respond to treatment. This is why your doctor has put you on Pentasa etc- with the goal of putting your Crohn's into remission.

A lot of people with Crohn's find that certain foods make their disease worse; these foods vary greatly among people. For example, I'm okay with eating dairy products, but can't eat raw vegetables or leafy things like lettuce without having major issues. To find out what these foods are for you, you kind of just have to experiment- try not eating certain foods for a while, and reintroduce them to your diet, watching what happens. Since your Dr. told you to avoid milk, you can start with that- there are lots of alternatives to dairy products that are lactose free, such as soy or rice products.

As far as bland foods, when I'm having a flare I generally eat a lot of soft rice, plain chicken, mashed potatoes, boiled veggies, etc. As I said earlier, each person has different trigger foods, so the foods that work well for you might be different.

Finally, there are a ton of great resources on the web, including this forum, where you can find more information about Crohn's! Go ahead and search; you'll find lots out there. :)
DX with Crohn's at 21 in '06
Resection of TI and Cecum/3 Strictureplasties in May '08
I've been on most entry-level meds out there: prednisone, AZA, pentasa, ciprofloxacin, metronidazole, etc etc etc... starting Remicade soon, after discovering an enteroenteric fistula.
Flock of Parrotts- my family blog.


xraygrrl
Regular Member


Date Joined Aug 2004
Total Posts : 102
   Posted 3/26/2009 3:42 PM (GMT -7)   
Hi Mrs M! I'm sorry you have to be here but at least you're among friends. I agree with the others, diet is sooo different for everyone. I've tried the SCD diet, no gluten, no sugar, etc. but found I do best on the low residue diet. I can handle dairy fine so I eat a lot of macaroni and cheese. My go-to foods are a peanut butter sandwich on white bread or some mashed potatoes. You just have to experiment, like leabug says. My flares have lasted varying amounts of time, I'm currently in my longest one, going on 2 years. The good news is that at least now you know what you have so you can start working on finding out what medicines and foods work for you. It's scary at first but you do get used to it & you'll be amazed at how strong you find out you are. We're all here for you, hang in there!

yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 3/26/2009 4:08 PM (GMT -7)   
Mrs M, All the advice you have just been given is the best you can get anywhere. Like the others, I have had Crohn's for 30 years now and I don't think there's much I could add to what's already been said. I will say this though, don't be scared. You have a very good chance of getting this under control in a short period of time. Flares can come and go and they can be short term or long term but just come back and pour your heart out here. These are the best friends you'll ever meet. You'll learn alot about Crohn's from the folks on this site. We have been there and done that many times over. Best wishes. Tony   P.S. Don't be afraid to ask about anything. We talk about gas, diahrrea, poop, arthritis, fear, depression but we also laugh alot too.


Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade, Flagyl, B-12 injections and iron. Feeling much better!
God Bless. Tony

Post Edited (yellowfin43) : 3/26/2009 5:13:11 PM (GMT-6)


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 3/26/2009 4:50 PM (GMT -7)   
Having crohn´s is not the end of the world , there are many things that are a lot worse, of course you want to be healthy but life is not always fair.

I have been sick now since august 2007, i am getting better but it is a slow process. I had to stop working and go on disability in October 2008.

Having crohn´s has made my life better in many ways, of course the pain and the D suck but i am more relaxed and don't take life as seriously as i used to.
I take one day at a time and try to do the tings that make me happy. And also spend lots of time with my family.

I have been looking into new hobbies and try to use the time i have when i am sick to learn something new if i can or read a good book.

I know Crohn´s sound scary and your doctor is rude for not taking better care of you, because the shock of hearing that it is crohn´s is a big one but not as big when you get all the info and support you need.

My case was kind of funny because they took blood tests for HIV/hepatitis C at the same time so when the doc told me i had Crohn´s he also told me i did not have HIV or Hep C so i was so happy about not having HIV or hep C that i did not care about the Crohn´s thing :P

I did not think i had HIV or hep C but nothing scares me more then those two things.

Good luck with your crohn's try to look at the bright sides of life and get a new doctor ;)

And we are always here if you need help with anything.
24 year old female
Diagonsed with Crohns disease in December 2008..
Medication - Asacol, Remicade, Entocort

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