Very Frustrated

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RFWrangler
Regular Member


Date Joined Nov 2007
Total Posts : 38
   Posted 11/27/2007 8:14 PM (GMT -7)   
Hello,

I am new to this forum and I am currently very frustrated. In 2003 I developed a very severe case of c. Difficile. I actually had 2 cases of the disease rather close together. I was back and forth to my family doctor, the ER, and a gastroenterologist at one of the leading digestive disease centers in the US. During the course of my case they diagnosed me with UC and after the final course of steroids and antibiotics I was fairly pain free but still had severe diarrhea and I am unable to digest many things esspecially vegetables.
The pain and weakness that I developed went on for well over six months before I had an relief and I was finally able to go back to work.

In 2005 I had a flair up and my family doctor put me on steroids and within 2 weeks I was pain free and able to return to work again. Several months later I was finally able to get in and see a gastroenterologist in the area that I moved to. The doctor schedule me for a colonoscopy and said that I didn't have UC and that my condition was IBS.

This year I have had another flair up and this time it was worse than any of the other flairs to the point that I was in the ER 8 times in two weeks for pain. The gastroenterologist put me on Donnatel to help releive the cramping and that didn't work. I ask my family doctor about going on steroids again since they have worked in the past. Since I was put on steroids I have been more or less pain free but I still have a little pain in the upper right and lower right quadrant but it is very managable compared with what I was experiencing.

All of the recent tests that they have done recently have not showed anything and recent scopes showed relatively minor problems of gastritous and duodentnitis and a small hiatal hernia. None of these should be causing the pain that I have been experiencing and the CT scans come back saying that I have and enlarged spleen and an enlarged appendix but the blood test specifically the white blood count come back as normal or low.

My family doctor suspects ileitis (Crohn's) or some other type of inflammation in the small bowel. The gastroenterologist that I was seeing refuses to see me any more because a surgeon was called in during one of my ER visits due to the enlarged appendix and he was able to do both upper and lower endoscopies soon than she was and she got upset.

I have no idea what is going on with my body and this really is frustrating when all that I an trying to do is find out what is wrong with me and now I have a doctor that is suppose to be a specialist and a professional getting there feelings hurt because I talked to another doctor.

Is Crohn's Disease hard to diagnose and can it "hide"? If anyone is in the Bay area of California could you recommend a good doctor for me to go to?

Thank you.

Post Edited (RFWrangler) : 11/28/2007 12:30:34 PM (GMT-7)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/27/2007 8:40 PM (GMT -7)   
HI RFwranler Welcome to HW glad you are here with us the help and info is great. I am following the low roughage diet that is easy to digest foods no nuts, seeds ,popcorn and cook my veggies until they are very soft also eat very soft fruit like apple sauce and banana's. I also stick to white bread that is easy to digest and minced meats and I eat fish. It seems to help with pain . Yes it can be frustrating when a person doesn't know wht is going on with there bodies. Sorry your Dr. got upset hopefully there will be someone that will help you find a DR. in your area. Six months of not feeling good is a long time so I hope you get some help soon. Lots of people here have been on the steriods I am on them too and have been for quite awhile so hope to get off them soon. So what are they planning on doing with your enlarged appendix? Hope you feel better soon .lol gail

sanfran
Regular Member


Date Joined Jul 2007
Total Posts : 56
   Posted 11/27/2007 9:49 PM (GMT -7)   
There are a lot of good GI's in the Bay Area. Dr. Jeffrey Aron at CPMC/UCSF is an IBD expert and used to run the CCFA.org. My GI often consults with him. I went to CPMC and was first diagnosed there and met several of the GIs on staff and they were all very helpful and knowledgeable.

From many of the posts here and from what I have read elsewhere, CD can be very hard to diagnose but there are a number of tests that can help a qualified GI make a diagnosis.

Good luck.
Dx with Crohn's Colitis July 2007
37 yr old working Mom with two beautiful little girls (2 and 4)
Prednisone (7.5 mg and tapering), 75 mg Mercaptopurine (6MP), 4.8g Asacol, Vicadin, Imitrex and Ambien as needed
Other stuff: probiotics and folic acid


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 11/27/2007 10:06 PM (GMT -7)   

Hi RF, welcome to the forum...

I am so sorry about your experience on the diagnostic rollercoaster and having to deal with doctors acting like 5-year-olds when you are feeling so ill.  I know how alienating and nerve-wracking it is to be so incapacitated and not have any answers.

I am going through something eerily similar right now...have had really severe diarrhea for a few years after a couple bouts of intestinal parasitic infections while living abroad.  Now am going to the bathroom an average of 15 times/day, extreme weight loss, fevers, electrolyte imbalances, you name it.  Have seen two or three GI docs, have had inconclusive test results (some positive, some negative, none definitive), no diagnosis, no real treatment to speak of.  They throw around differential diagnoses like Crohn's, celiac, lymphoma, the seemingly most random things.  They think it is a small bowel pathology, just like in your case.  Small bowel disease is one of the most difficult things to diagnose in medicine.  I am a medical student so my docs never cease to remind me of this.  Knowing that, unfortunately, doesn't make it any easier.

If you're like me, sometimes you think of just throwing your hands in the air and waiting around to wither away; or you get a burst of energy to "figure it out" and try to enlist as much help as you can; or you just want to scream into a pillow for hours; or you just sit there on the toilet and let it happen...and let it happen again...and again. 

I don't live in California so I can't recommend a good doc, but I can recommend some tests that you might ask your next doc about, to see if they might yield more specific answers:

1) Small bowel enteroscopy - goes further into the small intestine than a traditional endoscope, so the jejunum can be partially visualized (normally only the duodenum is).

2) Stool electrolytes (to check osmotic gap)

3) C-reactive protein (CRP), erythro sedimentation rate (ESR), Prometheus IBD serology 7 (all blood tests)

4) Capsule endoscopy

Hang in there.  Keep talking to us, we're here to help.


Co-moderator - IBS Forum


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 11/27/2007 10:29 PM (GMT -7)   
Welcome, it sounds like you are lucky to be rid of that GI anyway. You should have been put on pred right away probably., and possibly not had so many ER trips. Sounds like you have what we all have here, and pred is our lifeblood sometimes. Yuck, I have been on it since Jan except for 2 months. I would head to the nearest major hospital/clinic near you for a second opinion. Hopefully sanfran's reccomendation can work out for you. They can always refer you to a local GI for follow-up. I also had c-diff about 3 yrs ago. The difference was looser stool and a different odor, even had night incontinence occas for a while. Good luck.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


diafygi
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 11/28/2007 7:19 AM (GMT -7)   
Sorry you're having such a hard time. I know how frustrating it all can be. about ten years ago I was in a situation like yours. In a lot of pain and doctor's acting like I was a nut of some kind. The pain got worse, eventually I couldn't eat at all without sever pain. the doctor's kep puting me through all kinds of tests, nothing showed anything. I went from 170 lbs to 108 lbs. Then one night the pain was so severe I was thrashing about the room, that's when my colon burst and I had emergency surgery. That's when they saw the crohns.
I found a doctor who was very humble, he said "listen I don't know a lot about crohns but I'll help you all I can." Well I became a doctor and read and learned all I could about the disease.
Today I feel great, I"m on remicade and Imuran. They need to be taken together, and Imuran dosage goes by weight. Don't let some doc be giving you 25 or 50 milligrams of it, dosen't help.
My best advice to anyone is, you be the doctor.

RFWrangler
Regular Member


Date Joined Nov 2007
Total Posts : 38
   Posted 11/28/2007 11:31 AM (GMT -7)   
Thank you everyone that has responded. I am so tired of getting treated as if I am making the pain up and that everything is all just in my head. This last flair up has been really bad and when I had to go to the ER because it got so bad that I couldn't tolerate it anymore I was treated as if I was a drug addict and that all I wanted was morphine.

What I want is answers. I want to know what is wrong with me, diarrhea for 4 years is not normal. When IBS treatment doesn't work and steroids help that tells me that there is inflammation somewhere. The bad thing is now that I am almost off this course of pred my symptoms are starting to increase again.

I am going to see if I can get sent to Dr. Aron and talk with my doctor about the tests that were recommended. Any and all advice is welcomed. I just received my records from Iowa and hopefully these will help the doctors to diagnose me. I hope that I get some answers soon.

Again thank you everyone for your support.
[bold]Still not diagnosed. Problems since 2003
________________________________________________________________

Current meds Prednisone 5mg every other day, Donnatol 12.5mg as needed for cramping (doesn't help), Prevacid 30mg daily
________________________________________________________________

Other issues
Depression taking paxil 30mg daily
Injured Right knee with 2 failed surgeries
Herniated disc t11-t12 being treated

________________________________________________________________

I am currently on disability for my knee awaiting retraining.
________________________________________________________________

Post Edited (RFWrangler) : 11/28/2007 1:25:56 PM (GMT-7)


RFWrangler
Regular Member


Date Joined Nov 2007
Total Posts : 38
   Posted 11/30/2007 3:38 PM (GMT -7)   
I am bumping this today because I am have more pain issues today.

The pain today is located on the left upper quad of my abdomen. I live with diarrhea and when I don't have water stools I have blood in the stool and it is very hard for me to evacuate and the stool is very small ribbons.

I am getting so tired of people telling me that their is nothing wrong with me. When the pain is so intense that I am in tears and can't straighten up there is something wrong. My last trip to the ER they gave me enough morphine that they were afraid that if they gave me anymore it would depress my respiratory system and that only took the edge off the pain.

I am now going on 5 years with out any real answers, a lot of theories but no answers. No I have a GI doctor that won't see me. I thought that multiple opinions were supposed to be a good thing. I guess that I was wrong. At least according to that GI.

I would like to be able to have some type of life and knowledge is a key factor with any thing. Right now my lack of knowledge as to what is wrong with me is scaring me and making me miserable. How can I fight an unknown enemy that is invading my body?

Could it be possible that the herniated disc in my back at t11-t12 is causing these problems? I am grasping at straws trying to figure this out.

I am going to try to get my family doctor to refer me to Dr. Aron but I am not able to get in to see him until next week. Wish me luck.

Well my luck is holding about like what it usually does. Dr. Aron doesn't take MediCal so I won't be able to see him. I am trying to get in at the University of California at San Fransisco. Hopefully I can get in there soon.

Thank you all for your support.
Still not diagnosed. Problems since 2003
________________________________________________________________

Current meds Prednisone 5mg every other day, Donnatol 12.5mg as needed for cramping (doesn't help), Prevacid 30mg daily
________________________________________________________________

Other issues
Depression taking paxil 30mg daily
Injured Right knee with 2 failed surgeries
Herniated disc t11-t12 being treated

________________________________________________________________

I am currently on disability for my knee awaiting retraining.
________________________________________________________________

Post Edited (RFWrangler) : 11/30/2007 5:21:22 PM (GMT-7)

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