Newly DX and miserable, advice??

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Newbie37
Regular Member


Date Joined Apr 2010
Total Posts : 22
   Posted 4/11/2010 2:33 PM (GMT -7)   
I found this website on a search and hope that talking to someone about what is going on with me can help.  I guess I am just basically scared and don't know how to help myself.  I started having problems several weeks ago.  I have had a bowel obstruction in the past caused by scar tissue and had emergency surgery for it (May 2008).  This pain felt very similar so I went to my Dr. who, after a negative CT, decided to send me to see my surgeon anyway.  He thought it might be the gallbladder and after an ultrasound and a hida scan ( which showed a 55% ejection rate ) he was not convinced that that was my problem because although it wasn't great, it was still within "normal" parameters.  After having an upper endoscopy, which showed GERD, and a small bowel serious, which came back as "chronic scar tissue causing narrowing of the terminal ileum"   he was leaning heavily towards the Crohn's diagnosis.  He was wanting to do a colonoscopy but my husband and I were unsure of what was going on and felt like we were getting the run around.  The dr. was not a very pleasant man, my former surgeon was on vacation and he is one of his partners, and acted like he got stuck with me and lead me to believe that Crohn's was unusual because I am heavy ( I have bipolar disorder which the meds I take for that have caused me to put on weight).  After reading some of your posts, I see that not everyone is super thin and yet you all have Crohn's.  He also feels that I have chronic adhesions which I already had surgery  for once to remove them from my pelvic area after my fourth abdominal surgery for women troubles (cancer and cysts) and as we all know, new scar tissue just grows in it's place.  I decided I should get a second opinion because what was the point of continuing with a surgeon who wasn't going to operate.  He did not do a very good job of explaining things to my husband and I and I have learned a lot from looking things up on the internet.  I have had several instances of abdominal pain, vomiting, and bowel movement issues over the past couple of years, but CT's were always negative and I was given pain meds, phenergen and sent home.  They all eventually went away, but this has been debilitating.  The small bowel series I had done was very difficult because thanks to a very nice radiologist who took the time to explain things to me, my bowels are not really where they are supposed to be.  They are crammed and stuck up in the upper right part of my abdomen, where all the pain is.  Thanks for listening to my rant.  Any advice would be appreciated.  This has been going on for weeks now and I have not really been functioning.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/11/2010 3:42 PM (GMT -7)   
Welcome to healingwell, but I am so sorry you have these issues going on.
I think a second opinion is a very good idea, and scopes are part of the Dx process with crohns.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/11/2010 8:12 PM (GMT -7)   
Hi Newbie,
I'm sitting here thinking that you may not have and IBD but this isn't to say you don't have a problem.

The clues to me are your multiple surgeries and that you say your bowels are not where they should be. There's also the normal CTscan.

Here's the thing: adhesions are enough to cause all your symptoms. You could be getting strictures, they may even come and go some, depending on how things are attached to one another and how much/what you've eaten.

I'd be looking for a doc who has an understanding of the gut when it's gone through so many surgeries. The position of your small bowel may be the culprit.

Best wishes,
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Lare inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/12/2010 6:34 AM (GMT -7)   
I agree with MToronto2 that it could possibly adhesions causing your problems. I have had multiple abdominal surgeries myself, and suffer with alot of scar tissue myself. The adhesions can get your bowel all twisted and cause obstructive like episodes. But like you said to do surgery to fix it is only going to cause MORE scar tissue. But I do think a second opinion should be done. Maybe they can do a laproscopic release to help ease some of the pain you are feeling. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Newbie37
Regular Member


Date Joined Apr 2010
Total Posts : 22
   Posted 4/12/2010 11:55 AM (GMT -7)   
Thank you for your answers. I am not totally convinced myself and am seeing another doctor next week. I understand that adhesions can cause a lot of issues and pain as well. My brother has Crohn's and his started differently than this. I think I will go ahead with the colonoscopy to hopefully get a definite answer. I just hate all the tests and waiting. It is also very expensive.
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