Can someone help me

[lost girl]

Hi all - I am in need desperate need of some answers -

I've always have digestion problems but it got worse towards the end of last summer. I thought it was celiacs - I would double over in pain any time I ate something with a lot of wheat and fiber also I could not eat fresh fruit. It became unbearable so I went to the drs.

I got tested for celiacs - everything came back negative. Only thing the dr said was that my Vit D count was a little low.

I had trouble with constipation - started me off with Fiber Citrucel - when that didn't work he then moved on to Myralax and then Amitizia. Those medicines just made my stomache swell up. I was still doubling over in pain whenever I ate something with too many carbs, wheat, and freshfruit - eventually I just stuck to Gluten free stuff and was fine.

Finally, I started seeing bloody mucus, and there was some blood - my Dr said this was chronic constitpation - outlet problem - possible collital inertia. He did the colonoscopy - my colon shape was normal. He found that I had hypertrophy of anal papillae and he said he found brown spotty patches in my colon - they were removed for a biopsy. The dr's nurse said that the brown patch things were from using too many laxatives in the past -- what worries me is that in the total course of my life I have only used a total of 7 enemas in my past - 5 during the course of my relationship w/ my dr - w/ his recommendation!!! Anyway...

I started the sitz 2 marker test and got sick - I could feel it move all throughout - the lower part of the right side of my stomach, the top part of the right side of my stomach, the top part of my stomach and the upper left part of my colon, but especially the lower part of the left side of my stomach near my small intestine. After 7 days the markers were still there - but I think that's b/c the 6th day I had to go the emergency room b/c I felt like the sides of the upper part of my stomach were caving in and they shot me up w/ Bentel.

Since my colonoscopy/biopsy I have also been having what I thought was diarahea - my abdonmen would swell up for hours - while I was doubled over in pain and then diarehea... so I could the nurse - and they took another x - ray - this is 3 days after the marker study ended - and there were still two markers left - one on the left part of my colon and the other on the right part. So a dr filling in for my dr said that this wasn't diarahea I've been having but secretion. Also the nurse said he said that I had quite a bit of stool still in me. I am wondering then if the "diarahea" I have been seeing is from liquids that I have been drinking - since this is the only thing I can easily digest.

Needless to say this is a very stressful time in my life...I feel like my dr doesn't take me serious and he treats me as if I'm crazy. Also I am thin and he has asked me before a couple of times if I've ever had an eating disorder and induced vomiting or used enemas excessively - I haven't and I do not have an eating disorder.

Has anyone else had such an experience or any insight - I would appreciate it. I just need someone to talk to.

Thanks

 

[xJillx]

Hi lost girl and welcome! I am sorry you haven't been feeling well and that your doctor isn't taking you seriously. And he should definitely be taking you seriously with your symptoms, especially the mucus & blood.

However, your doctor did do the right tests, especially the colonoscopy. But even though things may appear normal and biopsies come back negative, something may still be going on. I think a second opinion may be in order, because he should be eager to get to the bottom of this.

I hope that you don't have Crohn's, but if you do, then you can begin treatment and start to get some relief. I wish you luck!!

 

[lost girl]

Hey Jill,

Thanks for the post. I think my biggest fear at the moment is that I just don't know WTF is going on with my body. I am in such pain. Before you were diagnosed with Crohns did you have any of the symptoms I am having?

Chloe

 

[BEACHLC]

I had problems with doctors telling me that it was all in my head or just stress. It took a few years and a hospital stay before I was diagnosed with crohn's. If you don't like the way your doctor is treating you I would get another opinion. I had alot of the same symptoms, severe abdominal pain, blood, as well as some others but crohn's is not easily diagnosed so I went untreated for years. I am no doctor so I have no idea what you have but I have learned that it is best to have a doctor you trust and are comfortable with. I wish you the best and hope you find out what is causing all your problems.

 

[Crohn's 35]

Hi Lost girl,, welcome to the forum :bigwave: first of all, I would get a new doctor, Gi specialist (internist are not the best either in my opinion) You sound like you could have a stricture or narrowing which stops food going thru and only liquids. Crohns is very hard to diagnose, so hopefully you get some answers so you arent suffering with pain and bloat. Many people prior to diagnosis is low on Vitamin D, get Vitamin D3 gels if you can, easier to digest. Avoid dairy for the time being. Good luck and press for answers! ((hugs))

 

[lost girl]

Everyone thank you so much for your posts. It brings me solace to know that there are others out there who have been down this path. I appreciate the feed back and advice.

 

[chas-chuck]

I agree. I strongly suggest that you seek out a GI specialist. You are not as lost as you think. You have many supports here ready and willing to hold your hand through this tough time. Continue to pursue your quest and hopefully it will lead you out of your darkness. We are all holding candles to help you see better.
chas-chuck

 

[ameslouise]

Hi Lost Girl -

Where did you go for your scope and other tests? There are tons of great doctors in Philadelphia. I go to Presbyterian and see Dr. Osterman. Other docs in that practice are great, too. xJillx goes to Jefferson and there is a great team over there as well. Don't be afraid to seek a second opinion!

- Amy

 

[lost girl]

Thanks. Right now I am in South Carolina trying to get through my lawschool exams. My school postponed my exams for me until next week. But I am coming home to Philadelphia May 9th, so I will definately seek out a second opinion from one of those doctors. I really appreciate you suggesting those names and I appreciate all the support from this forum. It's so scary to go into a drs office when your not having a flare up and for them to tell them you're healthy - but they're not there when your abdomen swells up later on when you're on the ground
and you can't move.

 

[Jer's Girl]

Welcome Lost Girl! I'm sorry for what you are going through. I know it is very scary. Unfortunately, a lot of us have gone through what you are going through right now, having drs treat you like you are just trying to get attention, or as if your symptoms aren't real. you are not the first to be mis-diagnosed with anorexia ether. Just keep your chin up, and keep seeing new Drs until someone takes you seriously. It is not all in your head! At least we are all here for you now.

 

[xJillx]

Hey Jill,

Thanks for the post. I think my biggest fear at the moment is that I just don't know WTF is going on with my body. I am in such pain. Before you were diagnosed with Crohns did you have any of the symptoms I am having?

Chloe

Actually, my first symptom which brought me to see the GI was the bloody mucus. More symptoms appeared soon after(urgency, frequent bathroom trips, pain, rectal pressure), but my main issue is that darned mucus! My Crohn's affects the rectum, and that is most likely where it is coming from. Granted, even my biopsies say normal. So frustrating...

 

[Astra]

Hiya Chloe
and welcome

Hope you get to see some of Amy or Jill's excellent docs when you get home in May.
In the meantime, know that we're all here for you thro this difficult time.
Lotsa luv
Joan xxx

 

[ameslouise]

Chloe- Good luck with your exams!

I hope you can get in to see a good GI right away when you get to Philly. Here's Philly mags list of best GIs from 2010:

http://www.phillymag.com/health/top...property_value=2&my_form_idx_148=148&x=26&y=4

I started out with Dr. Hoops but switched to Osterman b/c he has office hours in Radnor which is closer to home for me.

Hang in there!! - Amy

 

[lost girl]

that's crazy!!!! I have all those symptoms too and they're continually getting worse. I had been seeing bloody mucus for years but the constipation is what really was the straw that broke the camel's back. Also I have a feeling it's affecting my rectum too. When I went to the ER they did the bartrum swallow thing and all the sphincter muscles were inflamed in my rectum. And today when I went to my family doctor he said that my sphincter muscles were having spasms. I can't wait to get these exams over with so I can check out some of hte philly doctors you have been talking about.

You are all helping me get through studying for these exams with your support.

 

[lost girl]

Do you guys break out in sweat at night? I get chills right before a flare up and then after at night I break out into sweats and get dry mouth

 

[BEACHLC]

I would get cold then hot and have sweats when I was on alot of prednisone. The flare itself did not seem to do it although I did feel itchy all the time.

 

[allieinwonder]

I know what it feels like to have normal tests...it sucks! I have been hospitalized recently during my worst flare yet and my test results were still normal, so I completely feel your pain. You just have to go with your gut feelings (no pun intended) and keep looking!

Have you had a pill cam or any kind of test that tests your small bowel? Constipation can be a sign of it affecting that area. I have been looking at medical journals lately and they recommend the pill cam as the third test to get.

I hope you get relief soon!

 

[lost girl]

Hey it definately sounds like we're in the same boat. I hope you get some relief as well.
I am keeping a symtoms check list I am determined to get diagnosed with something so that I can be properly treated.

I just scheduled to make an appointment with Dr. Broad at Jefferson has anyone ever heard of him?