Don't know what to do anymore

[whysoserious]

Hello everyone, long time, no talk! I still read the forum, although I never post anymore, mostly because I haven't had any news to discuss until now.

I have still yet to be diagnosed. I just saw my third gastrologist on Thursday, and long story short, they still don't know what's wrong with me. I'm on Dicyclomine right now, which does help some, but it makes me very fatigued and lethargic.

I've had several tests: two cat scans, two x-rays, an endoscopy, a colonoscopy, and countless blood work. I had an IBD blood test done, but it came back negative. That confuses me, because I have all of the signs of IBD and my colonoscopy indicated that I have inflammation in my ileum and colon, however the biopsies on them came back negative. I've also been experiencing new symptoms lately; a recurring rash and leg pain. I don't know if that has anything to do with IBD or not.

On top of still not knowing what's wrong, all of my gastros have been jerks. They have been judgmental and act like since the tests don't show anything, there must not be anything wrong with me. I bring my husband with me to all appointments for back-up and he's seen first hand how they've acted. So not only can they not figure out what's wrong, but they apparently can't be pleasant either. I don't expect a doctor to baby me, but I don't like being spoken to in a condescending manner either.

I have no idea what to do anymore except just keep going. I'm still in so much pain everyday and still bleeding. It seems like when I get one symptom under control, another symptom flares up. I haven't been able to work or go to school in a year now, and I really want to just find out what's wrong with me and I want to get my life back on track. It really saddens me to see my former classmates graduating and getting their degrees when I had to put everything on hold.

Honestly, I am starting to wonder if I'll EVER get better.

 

[Starla86]

Have you changed your diet at all? Cut out fruits and veggies and fiber? If not I would try that and see if that helps you at all. As for the DRs Im sorry to hear your having such a difficult time. Go to another and then another until you feel comfortable with the way you are being treated and the results they are finding. This is your life and you shouldnt have to suffer through it. When Im in a bad flare, like now, I cut out solid foods and supplement with Ensure and gatorade and some soups. This gives my intestines time to rest. A lot of people on here juice fruit and veggies and that seems to help them. I really hope you find some answers and more importantly get "yourself" back.

 

[ameslouise]

Hi Serious:

I'm sorry to hear that you still don't have a dx yet, and that you are still feeling so poorly! Top it off with a-hole doctors and I can certainly understand your frustration!

I have read that leg pain can be associated with Crohn's, especially right leg/hip pain. As for the rash, psoriasis can also be associated with Crohn's.

Where is the bleeding coming from?

- Amy

 

[whysoserious]

I bleed anally almost every time I have a bowel movement. Sometimes it's just a little bit, but sometimes it's a LOT, like filling the toilet with blood (sorry to be so gross!!!!!). I have a hemorroid, but I don't think that's the sole cause of the bleeding, because when I went to the ER last year they took a sample and said that my poop was bloody, and that my anus itself wasn't bleeding.

Thanks for the tip about the leg and rash, I'm actually relieved that it could be attributed to that instead of having something totally different.

 

[Jennjenn]

Some doctors I feel just have no bedside manners at all. No empathy for some of them either. I would just keep searching for another GI or a specialist till you feel comfortable with one that helps you and cares about your well being.

I went through a few to see why I was getting so sick in the begining. Then for my second hospital stay the GI doc that came down to see me in the ER told me he would not let me go till he finds out what was wrong. I found that statement to be something he kept his word on. When he told me it was crohns...I actually said thank you. A relief to know what was wrong and that I did know my own body and that I and everyone else close to me knew I was sick.

I would keep searching for the right doctor.

 

[DMS]

Sorry that you're having such a rotten time with getting a diagnosis and treatment.
When looking for a Dr. have you tried this website
http://www.ratemds.com

My son will be switching out of a ped Gi by summer time, and I've started reading on some of the GI's close by here, there's no way that he's going to one that has a consistently crappy reputation - we've just got our ped GI trained - now we have to start all over.

Hope you find some relief soon.

 

[whysoserious]

Wow, thank you so much for that link! I'm so glad I looked my doctor up--he has a very poor rating and others were having the same problem with him that I have. Definitely not going back to him!

 

[Jennifer]

Sorry you've gone through so many doctors with no results. Can't understand why they would allow you to bleed and not do all procedures to find out what the cause is. For you I bet a good GI would have brought up a pill cam by now. You said that you had 2 x rays, with barium I'm assuming. Was that a barium swallow and enema? If you haven't had the barium enema, you probably should. Its not fun but its a pretty common test for IBD.

Blood in the toilet doesn't always mean its a hemorrhoid. I was bleeding like that but the blood was coming from my ileum.

I hope you find a good GI soon. My first GI was 4 hours north of me so sometimes you have to travel a bit to get a good one. Its worth the trip for sure.

Edit: And yes, the leg pain and skin conditions are related to IBD. I bruise easily for example and would get random rashes as a kid that weren't explained before I had my diagnosis of Crohn's.

 

[e13 boy]

I've also been experiencing new symptoms lately; a recurring rash and leg pain. I don't know if that has anything to do with IBD or not.

On top of still not knowing what's wrong, all of my gastros have been jerks. They have been judgmental and act like since the tests don't show anything, there must not be anything wrong with me. I bring my husband with me to all appointments for back-up and he's seen first hand how they've acted. So not only can they not figure out what's wrong, but they apparently can't be pleasant either. I don't expect a doctor to baby me, but I don't like being spoken to in a condescending manner either.

Hi whysoserious

The leg rash you talk of might be erythema nodosum.A scaly rash which can also leave bruise marks.I had it for 20 years.As an external manifestation of Crohn's D i always found that the more active the CD was in my gut,the worse the rashes were.I had it on my both my legs.My GP treated it with Betnovate cream but it never fully went away.
I finally said goodye to erythema nodosum after i had been taking Serovera AMP for 4 months.In the months to follow i gained complete remission for the first time in 21 yrs.

I found some of the Dr's attitudes very poor like you describe.Many times i found they ignored me because i did not fit the 'check list' some of them went by.They were wrong,many times and never even had the decency to apologise,even though i paid the worst price - losing sections of my bowels.

Never give up until you find out what is wrong.

 

[whysoserious]

Thank you so much for your replies. Crabby, I've had the barium x-rays but not the enema, the doctors have never ordered one for me. It sounds awful but at this point I'm willing to do just about any test to find out what's wrong. e13, I'm so sorry to hear that went through the same thing and ended up losing part of your bowel, that is absolutely terrible.

And thank you all so much for telling me about the rash and leg pain, at least I know what it likely is now.

 

[dazed and confused]

I know this thread is over a year old now, but I was reading it and feeling like I wrote it. I have all the same symptoms and problems, horrible doctors and no help and per all my tests I'm 'healthy'. The other day I yelled at my GI that 'healthy' people get cancer so what teh hell does that actually mean and how does it help me get relief?! I just happy I found this site because I don't feel alone anymore, its not just me going through this.