Should I seek a second opinion?

[jimmyt1989]

Hi all, I've had a couple of tests and both have come back negative for Crohn's (CT enterology, blood work, etc). They did find an ulcer in my ileum and polyps in my stomach after an endoscopy and colonoscopy. Quick background, my mom has Crohn's in the ileum (two feet removed). I had my gall bladder removed 4 months ago, but the symptoms still remain (nausea, bloating, gas, light stools, fatigue, constipation, occasional diarrhea, and acid reflux). Some other symptoms that seem unrelated are high blood pressure, restless legs, and tendonitis. So far, the only thing that has come back abnormal is a low alkaline phosphatase. One possible cause of low alkaline phosphatase is low magnesium which from what I've read is absorbed in the ileum.

Anyway, my question is this, should I seek a second opinion, or have they done all that they can do for me? I sort of get frustrated with my current GI. I feel like he wants to blame it on too much ibuprofen. I've only taken Tylenol for 3 months. I don't know, I really doubt myself when all of these tests keep coming back normal. However, there are days that I can barely stay at work for the entire day. It's really affecting my work and home life.

 

[Guest]

hi Jimmy - what is your consultant saying, now that the test results are back? is he recommending further investigation, or has he just assumed it's not anything besides the ulcer and left things as they are?

i would say, if it's the latter, then maybe seeing someone else would be a good idea. whatever the cause, it's not right for you to have to live with those debilitating symptoms without a proper diagnosis and treatment.

 

[jimmyt1989]

Hi dingbat (not calling you names) - he hasn't responded to the latest blood work on the alkaline phosphatase. I faxed it over last week for his review. The blood work was from my family prac. He was trying to rule out other things. Anyway, I can't get what I feel are timely appts with my current GI. Is it normal to have to wait 1.5 months for a follow up? At the last appt, he was leaning toward the ulcer as the main problem.

Also, thx so much for the response!

 

[Guest]

hmm.. well from what i know of active ulcers, yours could account for some of the symptoms you describe - but i'm sure you know what is ulcer discomfort and what is something else.. so i would err on the side of further tests if you can either get your consultant to take it further, or change consultants if he won't.

i'm a great believer in us knowing our bodies, and even though we may not know the cause of something, we know when something isn't right - don't ignore these signs, they're there for a reason.

re appointment waiting times - well yes, i have had to wait that long sometimes, but luckily because i have a Crohn's diagnosis, if i'm having a real problem i can attend a flare-up clinic which is held every week, and they take appointments right up to the morning of the clinic. if you're suffering, you really shouldn't have to wait that long.

 

[BLM]

Hey Jimmy, I am newly diagnosed, and Ive been really sick for years. Years and years of going to the hospital for serious pain, d or c, nausea, vomiting and sometimes fever. They always ran blood test and dismissed me because everything always came back negative....finally after several years of this, I got a diagnosis!! I new all along that something was wrong. I had to keep going to the hospital and had several GI's run tests in the past...and never found anything....so here I am today, with a completely new GI, and finally have some answers! Dont give up, the sqeaky wheel gets the oil. I wish you luck~

 

[jimmyt1989]

Thx Dingbat and Bev! It's good hear from folks that have experience with this, and have fought some of these battles already. I've got an appt with my family prac on Wed, so I'll see what he thinks about the second opinion too. Thx again and good luck with your treatment as well!

 

[Guest]

you're welcome, Jimmy let us know how Wednesday goes!

 

[DustyKat]

Hi Jimmy,

I say go with your gut feeling, pardon the pun, if you are feeling frustrated with your current GI. It can't hurt to get a second, third or however many it takes opinion. If you learn nothing new you're no worse off but if they find something then it's been well worth the effort. Best of luck!

 

[jimmyt1989]

Thx DustyKat,

Hopefully, the second opinion will turn up something useful! Thx again!

Jimmy

 

[Crohn's 35]

Hey Jimmy, I have ulcers (5 of them) and they were very hard to detect even through a colonoscopy, and I have had Crohns for many years. With some scopes they can't get past the large colon and into the small intestine, especially if it is inflammed. Seeing as your mom has Crohns, I too have had my gall bladder out, there is a likely chance you may have Crohns or colitis too. Can run in families, my sister has it and my brother has UC. Don't give up, as Dingbat says we know our bodies and you have to keep finding an answer. Keep us updated, a second opinion never hurts, sometimes fresh eyes can see what others don't. Good luck!

 

[Astra]

Hi Jimmy

Yeah I agree too, GPs with the best will in the world aren't specialists in IBD, you really need to see someone with a trained eye, so I would persist with a second opinion, lots of us have had normal blood work, etc, don't give up cos if it is Crohns, things will only get worse in the long run, you need appropriate meds and the right treatment.
xxx

 

[jimmyt1989]

Hi Joan and Jetta,

Y'all always give sound advice! I'm afraid it is getting a little worse. I find that I'm having to be really aggressive and vigilant with the docs in order to get timely and appropriate treatment.

Thx again and talk to you later.

Jimmy

 

[ataloss]

I def think a second opinion is in order. We as patients put full trust into our physicians. We have the right to find a doctor we are comfortable with and one who listens to us and tries to help us. No harm in looking around.People shop around for everything...clothes, cars, etc before making a purchase....it has always amazed me that we dont shop around for the person we trust our lives with.

 

[jimmyt1989]

Very good point Antonella! Thx so much!