Thank you all so much for taking time to reply to me with helpful and sound advice during the very stressful time with my daughter back in August. I'm writing to give you an update and let you know what happened with her. Her GI doc took several biopsies during the colonoscopy. She found one polyp and the other biopsies were to check for microscopic inflammation.
The great news is that the polyp was not the kind that can turn into cancer. The doctor said the polyp was caused by inflammation (I didn't even know that could happen). If everything goes well, my daughter can wait until age 40 to have another colonoscopy.
The doctor's ultimate diagnosis is that my daughter has Irritable Bowel Syndrome. She said it is "possible" that the inflammation was caused by very early signs of Inflammatory Bowel Disease, but that it's equally possible that the inflammation was just caused by the colonoscopy prep and all the trauma from the viral infection, or whatever was causing the extreme symptoms (they're still not sure of the exact cause).
My daughter is now back to being constipated, but she's taking Miralax again each day and it's manageable. It's unfortunate that she's missing this semester of college, but I'm extremely grateful that she's no longer in pain. Hopefully, she'll be able to return to her studies in January.
Thanks again for all your support - I'm very grateful.
\m glad your daughter got into her gastrointerologist - you are right about the urges and nothing happening sounding like IBS and IBD in general - so hard to diagnose. I have Crohn's and am very familiar with those urges. Everyone is so different but in my case, if I've had to go frequently or violently like your daughter has, I go thru the urge with nothing happening stage. It's horrible because you are afraid to go out anywhere just in case you actually do start to go again.
If the colonoscopy shows IBD there is a book published by a Canadian Gastrointerologist that is very down to earth and easy to read and understand. I went to a session several years ago where he was the speaker and I bought his book. A few days ago, I saw a reprinted version was available through Amazon and ordered it - it came today. The book is called "Crohn's Disease and Ulcerative Colitis - Everything You Need to Know - The Complete Practical Guide" by Fred Saibil, M.D. There is a tribute on the cover by a Dr. at the Mount Sinai School of Medicine in New York "Dr. Saibil's (book) should be required reading for those individuals and families who live with the realities of Crohn's disease and ulcerative colitis. It is a treasure trove for those who are new to the illnesses, and a wonderful reference even for those who have long experience with them.
Good luck and I hope your daughter soon recovers and can make up for the semester she will be losing.
Lin from Peterborough, ON., Canada
10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)
I have had IBS most of my life. Not formally diagnosed until years after it started, back then it was called 'nervous stomach' and all I could take was Pepto Bismal. Anyway, to my point (well, 2 of them). Proper diagnosis is absolute key - you seem to be well aware of this but I have to say it as I've run across too many people who think they know what they have and are treating that only to find out later that the problem and thus the treatment was wrong. I too had a colonoscopy which showed that everything was fine. IBS is, unfortunately, diagnosed by eliminating all other possibilities. My doctor then told me to figure out what I was reacting to and avoid it - Good bye, don't bother coming back (I don't see him anymore!). Fortunately my primary care helped me to figure this out. So for my second point. After years (15-25) of avoiding the foods and minerals that I determined I was allergic too (which grew over time), I found Advanced Allergy Therapeutics. This procedure has allowed me to now eat all the food and minerals that I had to avoid - it's wonderful! So, if she does have IBS, I suggest looking at this website for more information and treatment locations [http://www.allergytx.com/]. I still have IBS (once you have it, you always have it), but most of my triggers have been eliminated with AAT and I no longer sit for hours in the bathroom, doubled over with cramps, downing Imodium like it's candy.
I truly hope that your daughter is diagnosed soon and the treatment is quick and easy! As a parent of a Special Needs child, I know the pain that we suffer when our children suffer!
Jill, Mom to Kelly who is 25 years old, has the physical capabilities of an infant, mentally 1-2 year old, controlled seizures, vision problem, and is the absolute happiest person I know. She is a true Blessing!
Thanks so much for replying and for your support. We just got back from an appointment with my daughter's gastroenterologist and they scheduled her to have a colonoscopy this Monday, Aug. 26th. I hope that will provide some answers.
current weight: 199.0
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I am so sorry for all that is going on with your daughter. What a horrible situation for her. If your GI doc is back from vacation I would make an appointment. I wonder if I GI specialist looked at her when she went to the ER. This seems like a very unusual situation for her. Please keep us updated on the situation.
My daughter has been suffering for over a week now. First a bit of background - she has had chronic constipation since birth and has had to take something for the constipation every day of her life - sometimes several times a day.
A little over a week ago, she began having burning diarrhea and was up all night with it every 10 minutes. This went on for several days, but instead of it being every 10 minutes, sometimes she could wait 30 minutes. Then she started having lots of rectal bleeding.
I took her to her regular M.D., because her GI doc was on vacation. She gave her a prescription for intestinal cramping (which didn't do much good at all) and she asked for stool samples which we finally got the results of this morning. Everything was negative - no problems. We weren't able to get enough stool for the C diff test because the doc had also told her to take an Imodium.
Last Thursday night the pain was so bad we went to the ER - they did blood test but refused to do a CAT scan because they said it wasn't necessary (even though her regular doc on call told us to go to the ER to get a CAT scan). They said it was viral and that she would feel be perfectly fine by today when her college classes begin.
She is not perfectly fine - all she can do is lie in bed and go to the bathroom. She has frequent urges and pain that seems like she needs to have a BM even if she can't and nothing comes out.
They gave her a script of Hydrocodone at the ER and she could not have made it this long without it. I know it causes constipation, but for the first time in her life, that's least of her worries now.
Does this constant pain and urge to have a bowel movement with sometimes results and sometimes no results sound like IBS?
Also, has anyone here ever been diagnosed with abdominal adhesions? If so, were your symptoms like my daughter's?
Any comments or help would be appreciated. She's going to miss this semester of college, which is disappointing, but right now I just want my daughter to stop being in pain and in this never-ending cycle of BM urges - even when nothing will come out.
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