Newbie Crohn's and still in shock?

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pinkymoo
Regular Member


Date Joined May 2009
Total Posts : 28
   Posted 5/10/2009 3:59 AM (GMT -7)   
Firsty thank god i have found this site it seems so informitive and i am so happy its here!
 
Im a 37 year old female with 4 year old who now has Crohns. me that is not child
 
Since September 08 i had been suffering with soft stool everyday and just thought it was stress ( That was all i had no stomach pain no nothing)
Then as i began noticing white mucus i thought this isnt normal best to see my doctor.
So of to have my Colonoscopy 4 weeks ago, when i woke with a very sore stomach i was told i had ulcerative colitis and that it wasnt serious.
Then i waited 1 week 3 days to see my specialist who preformed the colonoscopy hoping that he was going to give me tablets and be on my merry way but was devestated when he said i have Crohns and that he cant help me now and that i have another week and 2 days to see another specialist who can help me.. i am just shaking my head thinkin this is serious i need medicine why make me wait one more day!!!
Anyhow whilst in my specialist office he told me that i should be very sick and that he was surprised i was not ill according to my test i am extremely inflammed and should be having severe stomach cramps..i think?
 
At present i have the usual stomach cramp that tells me toilet time i am going mornings around 3 times afternoon maybe 2 and at night 3 -4 times this all seems to happen after i have eaten.
i also have developed ulcers in mouth and 3 on side of my face towards neck line,
My throat feels sore and when i eat i feel a tightness as it goes down kinda like bread getting stuck cause eating too quick i am also tired most days and of coarse bloated with not much appititeand also suffering with some nausa not all the time.
Also was a smoker but now stopped as i read it makes it agressive.
 
i am not asking for a medicial dignosis but my signs of this illness seem seroius should i just wait are my symptoms normal of crohns and that an extra week will not make a difference?
i am prepared for the worse and i know that my life will be very different.
 
Has anyone else had to wait for treatment like me?
 
Thanks for reading people and i hope i get through it all ok
 

Bible
Regular Member


Date Joined Jul 2007
Total Posts : 188
   Posted 5/10/2009 4:15 AM (GMT -7)   
It will be ok- I am 36 yrs old and I was diagnosed at 15 years old. I have two little boys and a most of the time wonderful husband. I take imuran 150 mg., cimzia, prednisone. I can't help but think if the original Dr. thought you were ok to wait, then he probably knows- If you start experiencing severe symptoms- go to the ER, make sure you tell them your diagnosis.
Wish you the best and goad you joined us!!

pinkymoo
Regular Member


Date Joined May 2009
Total Posts : 28
   Posted 5/10/2009 4:19 AM (GMT -7)   
Thank you for your advice Bible yes if i my symptoms become severe from now till appointment i will go to the Hospital

Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 5/10/2009 6:18 AM (GMT -7)   
pinymoo, you are going to find our that there are a lot of different 'normal' symptoms of Crohn's. I have seen many doctors and been scoped many times in the last two years. They all thought I should be sick from what they see, but have not been. Your wait does not seem long at all compared to most and yes you can go to the hospital if need be. Good luck.

55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Sigmoidectomy scheduled for May 11/2009


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 5/10/2009 9:07 AM (GMT -7)   
Sounds like some of the many "normal" symptoms of crohn's. Yeah it seems Dr. take their own sweet time about things. Wish they could feel the symptoms like we do. Best Dr. I ever had, had crohn's too and she moved away. Really miss her. Hope they can give you something to help you out.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/10/2009 10:46 AM (GMT -7)   
Everyone varies , I had CD affecting my colon, rectom and TI and never had stomach pains, on occassion I would get lower back pains which at times had me balling on the toilet with every BM (usually about 30/day) but that wasn't a constant either, so regardless of how bad my flares have been, generally my stomach has never been in enogh pain as a result of it, lucky, maybe or just the way my body reacts (or doesn't), like I said though when I had the lower back pains during every BM that was hard to stomach LOL.

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


ItSawesomeJohn
Regular Member


Date Joined May 2009
Total Posts : 51
   Posted 5/11/2009 5:06 AM (GMT -7)   
I went thru a similar case in the beginning on february when I was diagnosed I was in horrible pain but 2 weeks in the hospital wasn't that bad haha but after I got out prednisone had me nuts but now I don't mind it. But to me those symptoms are normal every week was something new ( bloating cramps acne acid) just make a suitable diet and keep the stomach refreshed( water) very important . Peaches and motts natural applesuace are great I eat it everyday as small snacks . If there's anything else I can do message me I'm here 2 help

misspriss82
Regular Member


Date Joined Mar 2008
Total Posts : 221
   Posted 5/11/2009 2:43 PM (GMT -7)   
Hey! Welcome to the crazy world of Crohn's!! I was diagnosed two years ago and still haven't gone into remission! It took a while for my treatment to start as well, especially since my meds weren't covered by my insurance and I was having to pay out of pocket $467 just for a one month supply!

I remember the ulcers in my mouth being soo horrible that they felt like gashes and I couldn't eat anything. Its a "diet" that I don't recommend! haha I can offer you some help though, my dentist suggested that I rinse my mouth out with cultured buttermilk and it totally worked!! took the pain right away!!!!!

I would suggest talking with your dr. about all the medicine options you have before making a choice (I was put on prednisone 5 times!!!!), also, I would talk with a dietitian and make a food diary of everything you eat. What works and what doesn't will be very important for you later on down the road. Good luck with everythign!!!! its a day to day thing, one day your feeling great, the others.. you're in the bathroom. So get a good book to read just incase! :)
26 y/o, diagnosed with Crohn's Disease at 25 y/o
Asacol 400mg 3 pills 3x daily
Entocort, 3 pills daily
Upset stomach daily, tired all the time (except when on Prednisone), occasional abdominal pain and sometimes mysterious rashes
Getting married Oct. 2009 and am ready to get into remission!!


orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 5/11/2009 3:53 PM (GMT -7)   
Unfortunately we sometimes just have to wait to see the Dr. You could try what I'm doing right now and call the office every day to see if there are any cancellations.

pinkymoo
Regular Member


Date Joined May 2009
Total Posts : 28
   Posted 5/11/2009 4:31 PM (GMT -7)   
Hi everyone thanks to all who have replyied.
i have called doctors office and there is no cancellations as yet but if they is she will call me..

i am really struggling now. last night was painful with every bowel movement i was upto 3am im a single mummy and my daughter was giving some trouble at night till then but i found soon as i woke my bowels woke with me?

it doesnt seem to be no different each day on what i eat i still find myself runnin to the toilet..
i have started taking Vitamin B from yesterday so i will see if that helps..

i am so depressed about this, this crohns has come at a time in my life where i am supposed to be really loving life, i left my daughters father in Feb i have my own place i was about to organise a wonderful hoiliday for us and i was lookin forward in enjoying the single life again....
Now i feel slapped in the face lost my zest for life.. i am not sucidial just pissed off that this has happened now when my life was supposed to be exciting...
well one good thing has come out of it is that my childs father and i have become friends again and he has been so supportive, he was devistated when i told him, he has been getting me heaps of info on it so i do have support when i need it... (he is still in love with me)

Will chat lata guys and keep safe all..
Thanks again to all that replyied i think i am going to make some wonderful friends here...

tall girl
Regular Member


Date Joined Apr 2009
Total Posts : 68
   Posted 5/11/2009 4:35 PM (GMT -7)   
a wonderful member of this forum suggested a book by Jill Skler called The first year: Crohn's and Colitis. I just finished reading it and it was very helpful. You should check it out. I feel more in control now that I understand more about the disease and my choices. I had my first GI appointment since reading it today and for the first time understood everything my GI was saying. Good luck to you!
25/ Female DXed Crohn's 1/09
Many diet restictions
Entecort, Pentasa, Zantac, Fish Oil
Still confused and sometimes angry/frustrated
However I am learning to laugh at all this more often


shaemack
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/19/2009 11:48 AM (GMT -7)   
Pinymoo- I came across your first post and my heart goes out to you! I wanted to share my story with you:
 
I was diagnosed while I was pregnant- with C Dif, then IBS, then Colitis, over a span of 6 weeks- in the meantime I was having bloody diarrhea every time I ate or even drank anything (as well as every hour just for fun), I was bleeding my way into severe anemia and my body started autocannibilising (did I spell that correctly?). I went into early labor, rushed to the ER and was finally diagnosed correctly by a Gastroenterologists with Crohn's. I spent 6 weeks in the hospital receiving blood transfusions, fluids and IV nutrition (I cannot recall what that is called at the moment-). I literally wished that myself or the baby would die.
 
But- once my son was viable labor was induced and he was small but healthier than we ever could of hoped for! After 5 days more in the hospital I left to a reality that I could barely even begin to grasp as a new mother to boot- I was too weak to work outside the home and did not enter remission for almost 4 years. It was incredibly hard. During that time my husband began to drink very heavily, use drugs and stopped coming home at night. I put up with that crap for 3 years and then finally packed his things into trash bags and put them on the front porch and had the land lord change the locks.
 
9 years later I am the proud mom of a strong, bright, loving teenage son. I am in a management position at work and am able to make ends meet. For the most part my Chrohn's is under control and I am even able to treat it with supplements and nothing else from time to time. In fact I am positively FAT right now! I do get fatigued easily, have severe cramping and joint pain from time to time and lesions on me arse all the time. These symptoms seem trivial and I do consider myself in remission. I am seeing a new Doctor early next month as my GI of 10 years left town and has proven to be irreplacable- (why do so many Gastroenterologist's personalities resememble the terminus of the GI system??) so I am hoping for one who will be willing to let me try Probiotics and can appreciate a good "poop joke". I am in fact a terrible patient and am always educating myself and wanting to try new treatments! Try Calcium, Magnesium, D and Zinc- it sometimes helps with the diarrhea and a B complex can help with fatigue. Some days are bad, some are good- but that's what life is.
 
I just want you to know that you can get through this and you can be what you want to be- it will take time and faith and hope and strength that you don't even know you have, but you can do this! 13 years ago I was a door mat that wouldn't so much as say "boo"- now I can proudly say that my son told me just yesterday "Mom, you are the strongest and most assertive person I know!". Chrohn's has made me tougher, kinder, more patient and grateful for the "little things". Sounds corny- but it's true........
 
P.S.- don't be afraid to ask for something to help with depression and anxiety- especially through these first years- it's not a sign of weakness- Think of them as Mother's Little Helpers!

Don't postpone joy!
40 year old female
1 Child - divorced
Diagnosed 1996- associated Osteo Arthritis, Depression, Anxiety, Acid Reflux Disease
Currently taking B6, B12, Calcium, Magnesium, Zinc, Lysine, Fish Oil, Celexa, Buspar,  and Levsin PRN
I refuse to take Prednisone- I would rather be in pain than be psychotic!! Asacol doesn't seem to absorb or help and I have taken Azathioprine for about a year, but I am tired of catching every little bug that comes along-

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