Need for meds after 2005 ileostomy?

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hollys mom
Regular Member


Date Joined Jun 2004
Total Posts : 120
   Posted 3/5/2008 10:02 AM (GMT -6)   
Well, here we are back again.  Many of you probably don't remember us.  I only see a few familiar faces. 
 
Holly has been doing just fine since her surgery in Sept. of 2005.  Just recently she has told me of pains similar to the old ones.  She no longer has a colon or a rectum.  What kind of test can be done to inspect her small intestines? 
 
She has not seen any doctors since her surgery.  Her doctor retired as soon as he finished with Holly.  And she is not a very trusting person, for good reason.  However, I have always felt that she should find another dr.  Isn't it true that she will always have Crohn's even though she had the colon removed? 
 
Anyway, she has been convinced to find another dr. to see what is going on now.  She has a recurring rash on her chest from time to time.  She is not on any meds, do you think she should be? 
 
Please help if you have any suggestions, Thanks

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/5/2008 3:36 PM (GMT -6)   
well i too have crohns, and i have an ileostomy. I still have my colon and rectum. However, i was told by my surgeon and gastro that I will still always have crohns its just a matter of lessening symptoms. Remember crohns does not only effect the intestines and rear. It can effect the eyes, mouth, throat, legs etc.

She may not necessarily need to be on meds, mayb just something for maintenance once in a while. It can't help just to get checked out :O)
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/5/2008 3:45 PM (GMT -6)   
o and as far as tests...they can do ultra sounds and things like that
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5691
   Posted 3/5/2008 4:40 PM (GMT -6)   
yes, if your daughter had surgery for Crohn's she should still see a Gastroenterologist as needed. It sounds as if she needs one now if it appears her symptoms are returning. If you have HMO please insist your GP to refer you to a GI.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/6/2008 4:56 PM (GMT -6)   
My surgeon at Cleveland Clinic actually ran a scope through my stoma to check for problems right in the office... so they can check her that way too. CD is a digestive tract disease that is chronic, but can be in "remission". Digestive tract means anywhere from mouth to rectum - that's my understanding. Other areas can show immune system symptoms, like erythema nodosum on the legs, or other skin issues, etc. I can remember that I was diagnosed with rheumatic fever and mono BEFORE they actually diagnosed the Crohn's Disease.

The earlier that she is diagnosed/treated, the better. How old is she? I'm not familiar with your other posts, as I am one of the new faces here on the forum, but not new to CD or an ostomy.

Hope this helps.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 3/6/2008 6:42 PM (GMT -6)   
not a trusting person, but for good reason? i think trust is essential in everyone's life....even when one has been hurt previously after trusting someone, if that person can't learn to trust again, they will suffer needlessly. I trust more than I should, but it is far better than being paranoid of everyone.
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


hollys mom
Regular Member


Date Joined Jun 2004
Total Posts : 120
   Posted 3/7/2008 8:28 AM (GMT -6)   

Thank you so much for all of your advice. 

I will post again after she has seen a new dr.  I must clear up the trust issue.  She had total trust in her first gastro, and she is nervous about seeing a new one.  The new dr has a partnership type office, so it is probable not to see the same dr.  I have suggested that she request to be able to see the same dr.  That is really all that I meant by not trusting.  about the time she was going to have her surgery, her now ex-husband just walked out the door without even so much as a good bye.  But as her  Mom, I can say that I am glad that he is out of their lives.  She is so much better since her surgery. 

Thank you again. 


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 3/7/2008 8:38 AM (GMT -6)   
I too had my colon remove just over 3 years ago and recently my rectum. I had an MRI done on my small intestines last month because you can only go so far with a scope through the stoma. Luckily for me it was a really bad period! I have heard that they use the camera pill to get a look at the small intestine but it can sometimes give inadequate results.
Erica
Crohn's and Ostomy in 2004

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