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HEY BABE I UNDERSTAND WHAT UR GOING THRU IVE JUST RECENTLY HAD SURG FOR CHRONS ITS A BEAST OF A PROB GOOD LUCK SWEETIE FINDING OUT WHATS WRONG
HI,
I am not at all surprised that they found endo. I have read more on this subject than any other. I have heard a lot of negative things also about Lupron and virtually all of the endo drugs. The absolute best treatment is to remove it surgically. It is imperative that you educate yourself because not all doctors are skilled at identifying the many different appearances of endo. The endometriosis association could put you in contact with doctors in your area. A consultation with Dr. Redwine who is a leading expert and practices out of Eugene, Oregon is another excellent contact. He only works with women with endo. Please look into one of the many support services via the internet as enometriosis can be a bumpy road! Very Best of Luck to You1
I'm back to work after my surgery. They found lots of ENDO everywhere, just like you said, especially around my bowels. Doc said she couldn't remove it all and it has been there for a long time apparantly. Now I'm on LUPRON for 6 months. I read HORRIBLE things about this drug...have you tried it or heard of anybody that did?!! I'm tempted to get off of it after what I've heard!!! How are you feeling?
I am scheduled to see a Dr. at Mt. Saini regarding surgery. They feel there is scar tissue and is bleeding and the anti-inflammatory meds are doing nothing. Thanks for the reply. Will see what happens
Good luck with your surgery. Nobody ever discovered why my abdomen (colon specifically) was covered with adhesions, they only said it could only result from some kind of imflammatory process. Endometriosis can be extremely hard to find (look up Dr. Redwine's work extremely interesting--he is a leading expert in the field and when I was 25(14 years ago I wrote him a letter and he actually called me and spoke to me for over an hour on the phone at no cost). His wife has endo which led his passion, but he told me he has found endo in women who have been operated on as many as six times but the surgeons said they saw nothing). In my case because the adhesions were not in my pelvic area he was less sure that he would find it to be endo he gave it a 10% chance and he was located in Eugene, Oregon--and I had no health insurance--couldn't work etc.. I also had a major flare up during one of my pregnancies almost unheard of for endo-because pregnancy provides hormonal protection-thats what led me to rather suspect crohn's the other cause of adhesions to form on an unoperated abdomen. Yet, I still have no answers and am not taking any medications ibuprophen which is often very effective w/endo makes my pain worse. Hope you will find an answer soon I'm not sure which is worse constant pain or not knowing why.
Thank you for the tip: I'll search that author! My laporondoscopic surgery is scheduled for March 19th and yes it get worst during my period but to be honest, I don't even know what's worst anymore...I could scream some days! Did they determine why you had those adhesions they found between your colon and the anterior abdominal wall? When I think about it that's the perfect way to describe the pain: it's almost as if my kidneys were "glued" to my back...?! Do you have kidney pain as well? Have you tried going to a research Hospital (Hopkins, Mayo Clinic..)
I have not explored surgery at this point, even though it is bad. What meds have you tried? I have tried a couple but have had reactions to them so at present I am waiting to see what will be tried next. My diet is extremely restricted (not fun at all) anything with salt, fat or fiber will make me flare..so that rules out all the flavor! Some advice I can give (if you like) is that I understand that NSAIDS (advil etc) can irritate IBD-may cause bleeding/flares. Also about the surgery, only if absolutely needed as it is not a cure, chances are very high that it will come back at the resection site within years and the more surgeries you have , well, it can lead to other types of problems with absorption. Take care.
kazod
I too have been diganosed with Chrons. What has helped me is a change in diet. I am off wheat and lactose. But unfortunately my pain has come back. I am very gassy. I take Pepcid and Maalox and when it is severe I take Ibuprofin. I am considering surgery as the Ileum is affected. Have you heard anything regarding surgery?
Have you had a laparoscopy to look for endometriosis? It can manifest in so many different ways. Does your pain cycle with your period at all? There is a lot written about this disease which mostly causes pain and is often extremely difficult to diagnosis. MaryLou Ballwig the founder of the endo association and has written two excellent books on the subject. It is scary, how quickly doctors dismiss us when they can't find an immediate answer. Take Care.
All this is so scary and frustrating! I've been in pain for 6 weeks (mostly flank pain on the right lower side but also general abdominal pain & nausea and small trace of blood in urine) I went through all kinds of tests. All they found was a cyst in my kidney (doc said that wouldn't hurt much) OBGYN suggested laporondoscopic surgery, convinced to find endometriosys, GI doc dismissed me for lack of dignosys, PCP simply said..."I don't know what to tell you" and I'm still in a lot of pain, sometimes it goes down to my right leg and it burns! I also have GERD (have been on Nexium for 3 years) and IBS-C. Does anybody has any suggestions on where to go next?? Please help meeeee!!!!!!!
The first CT scan I had showed something suspicious, barium showed nothing, blood nothing, colonoscopy (they were able to make it to the terminal illeum)and do biopsies- this is how I was diagnosed. They were about to stop the colonoscopy because I had tremendous pain around the loops of my large intestine however they did make it through (said I have sensitivity in that area, no crohn's in large detected). I would suggest having another colonoscopy so at least you can rule crohn's&colitis out. Take care
Have a low blood count in association with your symptoms suggests a possible source of bleeding. However, you have already had a comprehensive evalution, including the CT scan, MRI, colonoscopy, laparoscopy etc.
If you haven't had an upper endoscopy, I would certainly consider this. If there is a source of GI bleed that is still undiagnosed, I would consider more specialized testing - such as capsule endoscopy - to further evaluate the source of bleed.
Yes, it is possible that Crohn's may not show up on the barium tests. Again, capsule endoscopy may be helpful. There are also several antibody tests that can evaluate Crohn's disease. These would include antineutrophil cytoplasmic antibodies (P-ANCA) and anti-Saccharomyces cerevisiae antibodies (ASCA). People who are P-ANCA negative and ASCA positive are more likely to have Crohn's disease.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Thanks,
Kevin, M.D.
Just a bit of info for you..I was finally diagnosed with crohn's after a lot of run around, a lot of pain, weight loss and fevers. One test would show something and one would not. The test that I found with my situation to be least reliable was the small bowel follow through. My blood tests always come back normal despite severe active crohn's. If they went by that then I would be totally healthy (which I am not). There are other tests to check for inflammation in the large/small intestine- if I had the name of the test I would give that to you. (If anyone knows what I am talking about, it has to do with blood being drawn then certain part of blood is put back in and they can see this part of blood go to inflammed part of body). You mentioned that he could not continue with the colonoscopy- why is that? I am not saying that it is crohn's..I can only speak from the experience that I have had. I hope that it is figured out for you. Take care.
Hello
I have had similar pain and have had the run around- finally they did a gall bladder test and found it wasn't emptying properly which may cause right sided pain- feels like a balloon is inside and going to pop-
had the gall bladder removed but am still experiencing the pain...not sure if you've had your's tested-might be worth it.
My father in law had similar problems- had surgery and feels great.
ALso I've been reading about something called a telescoping colon-might be causing pain? And acute appendicitus- have you had it checked? You never know..
good luck!
Thank you for your insight. Can you tell me which test you had that was finally diagnostic? The doctor was not sure why he could not advance the colonoscope but he was sure he would find Crohn's so he rushed me in for an immediate barium exray when that was negative he gave up. Thanks again, hope you are feeling better.