Can I trust my doctor?

[athena_0667]

I am 24 years old. Female. My father had Ulcerative Colitis about 25 years ago and had his large intestine removed. I have been in and out of the doctors since I was 16 complaining of abdominal pain and digestive problems. When I was 17 I had my first colonoscopy and the results were Irritable Bowel Syndrom. My syptoms were managable for a few years until I got a flare of up dirreah going 15 times a day for a month straight. Finally I had another colonoscopy done when I was 20 and they said that they saw signs of inflammation concluding I had Crohn's Disease (even though my biopsys came back negative). They treated me with Asercol sooner than later taking up to 12 a day. After about a year of this I went into remission. I have been fine for the last 4 years until these last few months. I have been dealing with a lot of abdominal pain, changes in bowel movements, loud sounds of digestion, feeling my food move through my intestines, sudden changes in temperature right before bowel movements, and more than moderate abdominal pain. The pain seems to be on either side of my lower abdomon, I think more frequent on my right side. Sometimes it can be a very sudden and stabbing pain lasting for only a second or five minutes. Other times its kinda dull and achy. I have also noticed changes in color of stool, sometimes dark dark brown (not black or bloody) other times dark and light green. I have not had a sudden change of diet and tend to stick on the healthier side of food. I have been seeing a specialist throughout this period and had another colonoscopy just a month and a half ago. He told me everything looked normal. The results were:

The specimen is received in formalin and labeled with the patient' s
name and "random colon biopsies". The specimen consists of multiple
tan-white irregular soft tissue fragments ranging from 0.2 to 0.7 cm.
The specimen is filtered, inked green and entirely submitted in one
cassette.

He then went on to tell me that I dont have Crohn's Disease (even though he previously looked at my colonoscopy from 4 years ago and then agreed I had Crohn's and I was in remission). He went on to tell me that this was good news and that he believed it was the IBS that was bothering me. He still wanted me to get a Small Bowel Follow Through just in case. So I did that last week. Here are the results from the radiologist.

Technique: Upper GI series performed in the usual fashion using thin and
thick barium and effervescent granules. 5.6 minutes of fluoroscopy time
used.

Findings:
Esophagus: Unremarkable.
Stomach: Unremarkable.
Duodenum: Unremarkable.
Jejunum and ileum: Small bowel is noted along the lateral margin of the
ascending colon, which raises the possibility of an internal hernia. This
would be better evaluated by CT. There is mild separation of small bowel
loops within the right lower quadrant seen on the last spot fluoroscopic
images, which can be seen in the setting of creeping fat with inflammatory
bowel disease. However the bowel itself appears noninflamed. Normal transit
time.
Impression:
1. Small bowel lateral to the ascending colon, raising the possibility of
an internal hernia. This would be better evaluated by CT.
2. Mild separation of small bowel loops within the right lower quadrant,
which can be seen in the setting of creeping fat with inflammatory bowel
disease. However the bowel itself appears noninflamed.

So I called him with these results and recieved a phone call a few hours later. He then again on the phone told me that the Small Bowel Follow Through looked good and normal. I guess I'm confused. At my last appointment he also pressed on my upper abdomen directly under my rib cage and asked me to breath in. It hurt A LOT. He stated that it might be a Gallbladder problem but he didnt want to worry about that right now. SO to make a long story long...I am now taking something called Levsbid. He said this can cause constipation so he wants me to take a fiber supplement. So following doctors orders I am. Every day is still VERY painful and uncomfortable. Syptoms havent seemed to change much and I am still going about 3-4 times a day. Usually the first bowel movement is solid and the rest get more and more watery. I also am dealing with having A LOT of gas...I'm sure due to the fiber supplement (which is also painful). So I guess I am kind of at my wits end with all of this and am looking for somebody who can tell me if I need to get a second opinion or if I'm the one thats crazy. If anyone can help it would be greatly appreciated!!!
Thank you for listening!!!
Maranda

[michelle7841]

I a a 51 female, who after years of searching was diagnosed two years ago with Pancreatic Divisium, which has turned my life upside down with Chronic Pancreatitus., and increasing bouts of very low potassium.  My last episode of low potassium caused me to faint, hitting the bathtub, damaging my radial nerve in my right arm, which they thought at first was a stroke due to the complete loss of the use of my arm.  After many months of therapy, I regained the use of my arm, with my wrist being partially paralyzed, muscle atrophy, which I must wear a brace at all time for support.  I should mention I had an MRCP of my pancreas when diagnosed and also my gallbladder removed.  For the past 18 months I have been able to keep working, dealing with chronic pancreatitus, chronic pain barely managed with pain meds, and have had to give up 99% of the foods I used to eat due to extreme pain, my diet consists of very little fat, no dairy, mainly chicken, rice, bananas, and when in a bad flare clear liquids only.  I am in constant pain, but have made the best possible life that I can given my health issues, I am fighter and just refuse to let this define me, I have a beautiful 5 year old granddaughter who is the light of my life and each day is my inspiration to keep up the good fight!  .  I  On top of all this I ws diagnosed with Rheumatoid Arthritis, just my luck a very aggresive form have been on prednisone for one year and just hate that drug, and have decided to go on methotrexate, but because of my potassium keeps dropping to such dangerously low levels, my Rheumy Dr. will not start it until I am stable and my body is not so weak. I have just spent the past week in the hospital due to an extremely painful pancreas flare, very low potassium and my first truly awful RA flare.  I was released Friday the 9/7, only to be re-admitted because my potassium fell to a new low, and between the chest pain, extreme muscle cramping, dehydration and just awful pain, I was not discharged until my potassium rose a little.  That was Monday 9/9, and had it re-checked today 9/11 and my potassium has now fallen again to a new dangerous low.  I have been taking potassium supplements for almost a year now, and the dr. said that my body has stopped absorbing them.  So each time I have to have a 5hr potassium drip with Diluadid IV for pain.  It seems as soon as I am done, my potassium immediately begins to fall again.  I also had an endoscopy which from what I understand from reading the report, was normal except questions of Celiac disease and "4 irregular  tan soft tissue fragments up to 0.5 in greatest dimension" in  my duedonum.  I have no idea what this means as my Gi doctor is out ill.  I so apologize for the length of this, but I am at my wits end, with the horrible pain in my pancreas, muscles and my joints feel like hot burning flames.  I have made the best life possible these past 18 months, and in a matter of 3 weeks my life has been turned upside down and have had to file FMLA and at this point am unable to work, barely able to stand more than 15 minutes at a time.  A month ago I was walking 4 miles a day!  I am desperate and just wondered if anyone might know what the soft tissue is all about, or anyone else that has had to deal with chronic pancreatitus?  (sp??)  Thank you for any help you might be able to offer me, I understand this is not a doctor site, but like I said I am pretty much at my breaking point!  Thank you so much!  Michelle

[rdstoltzjr]

Hi Miranda,

You ask, CAN I TRUST MY DOCTOR? Your health is the most important thing you have in this life.  You are the only one to trust your health with, you are responsible for your health, not your docotor.  Always be skepitical and check out what they tell you, as you are doing in this forum. You should know more about your body than your doctor. The doctor works for you, if he or she doesn't solve your problem, FIRE THEM, AND GET ANOTHER ONE.,

I have Ulcertative Colitis, and have had it most of my life. I am in a flare up now, and it is miserable, but I can handle it. Some of your symptons sound like mine, I am taking ASOCOL 400 MG THREE TIMES A DAY, AND IT GIVES ME RELIEF. You may be suffering gfrom the same thing as your father, but there are many new meds conming on line to help us. If you continue to have p;roblems, and no answers---I would suggest writing a letter to the Director of the Mayho Clinic, or the Cleveland Clinic in Cleveland Ohio, and tell them your problem and ask for help.  Some times they will take your case FREE OF CHARGE to help them learn more about the problem.l Good Luck, Peggy

[badolpuddytat]

Hi, I also read your post and will also tell you to get another opinion. I was diagnosed with Crohn's over 35 years ago. My first GI doc said "he thought" i had Crohn's but the tests were all negative. Four years later they became positive for Crohn's. I had a bowell rescetion and now the doc is trying Humira on me. I also had numerous GI doctors too. My latest ( I love him because he fights for his patients) did all of the testing. Colonoscopy, barium, ect. He took biopsies and sent them to a lab. The first lab said it was positive for Crohn's, and then he sent the biopsy to another lab. The other lab said it was NEGATIVE!!!!!!! To make a long story short he fought my insurance to do a capsule endoscopy and FINALLY got it. It showed that I did have Crohn's by the anistimosis (sp) and he put me on entocort. I was in remission for 8 years followed up last month with a flare-up and now I will be on Humira starting the middle of the week. As i said, I have been with him for 10 years now and he has seen the good side of the Crohn's vs the bad and knows I'm not seeking pain meds. ( he has been the one that has given me percocets 10/650). I am hoping that the Humira puts the Crohn's back into remission. By what you tell me about the colors, you also have a motilty problem. Green means that the food is passing the intestines too fast. I WISH YOU THE BEST OF LUCK!!!!!!!

[dtown1956]

hi. i read your post and felt a need to let you know some things. i have had crohns disease for over 30 years and have found that your symptoms mimic mine except that i nhave narrowings due to scar tissue building. i found that staying away from fatty foods keeps the stool from being greenish. fatty foods can also speed the waste along the intestine too quickly which may explain why you have a normal bowel movement followed by more watery ones. medicine is helpful and i am on many different but it is when i can figure out what foods trigger these unpleasant responses that i can actually take control of my disease and live a more normal life. for me i need to always be trying something so that i do not have to depend on doctores who know less than i do and seem to think some of it is in my head. good luck. i am sure you will find what works for you and live a long long life. write me anytime you need to talk. take care,Dan

[Isabel81]

Hi Maranda,

I can only comment as someone who has been diagnosed with ulcerative colitis and had a few different GI docs, but I personally would get a second opinion, just to see if there is a more obvious diagnosis and/or treatment that jumps out at another doctor.  I had to change doctors awhile after my diagnosis due to moving, and my new doc said I was doing so well he wanted to take me off of my meds (kind of scary when skipping them still causes adverse reactions, and a doctor's prescription is the only way to get the meds) and then at my next visit told me he'd changed his mind due to doing a little more research on the subject.  For various reasons, not least of which being that he scared me and seemed to know less about my condition than I did, I found a new doctor, who is great and knows a lot more than I do, as he should.  If you live near Boston or NYC, I can recommend a couple of good doctors.  If not, I would recommend calling up the CCFA (www.ccfa.org) and asking for names of good gastroenterologists in your area.  That's how I found my current one.  Good luck.  -- Isabel