Diagnosed, Not new to forum, But would like your opinions

[foxfire_joy]

Hi! First let me say this site is incredible! To try and avoid boring you to death I will give you a timeline of events in the last few months:

09.27.11: Surgery for peri anal abscess, doctor "repaired" fistula
11.11.11: Surgery to insert seton because last doctor did not "repair" the fistula
12.23.11: Colonoscopy - results Crohn's in my colon
01.04.11: Entecort to get symptoms under control

None of this was terrifying news and thank god - because i had been reading this forum - I went prepared with lots of questions. However, when I am reading your guys diagnoses etc - it seems like my GI guy isn't doing alot. Matter of fact - I asked him if my vitamin levels etc should be checked (I lost 35 pounds last year) and he said - I don't see any need too. I'm thinking - why not?

So - I guess the question is - should I get another opinion? Not sure I like how this guy operates (though I like him) always a wait - always in a hurry - just don't feel like he's really got time to deal with me. What do you guys think?

 

[Hexie]

In all honesty getting a 2nd opinion won't hurt - your doc seems not to be on the ball with you. Docs have to realise you gotta treat Crohns as soon as possible and not leave it be. If you want your vitamin levels checked then your doc should do that for you even if it's just to put your mind at rest.
Saying that my Crohns doc is a waste of space - we always end up arguing when I see him - he doesn't think I know how to deal with my Crohns - have had it 25 years so I probs know more than him!
I'd go for 2nd opinion - it's your right to do so

 

[chronic crohns]

Definately get a second opnion, its so important to feel reassured and get what YOU want, even if it is just to put your mind at rest, i spent a long time going along with what others thought best, but ultimately you know your own body!
I have had crohns for many years and infact, i now remember that it first started with Fistula .. three times it returned and infact a break abroad in cyprus of all places i was healed, then i returned to the uk .. and low and behold, ill again! i am lucky to have some good doctors now and recently joined the NACC and now found this forum (this evening)! good luck, stay strong and go get you a good doctor! :thumright:

 

[Crohn's 35]

I would ask him to do a blood test. Lacking Vitamin D can lead to us being on the forum in the first place. Calcium and magnesium and B12 are a few necessities in our system to not cause problems further down the road. If you are young, now is the time to keep levels up...not wait til later. Makes sense? You are a smart cookie to recognize this, oh and yes, the forum has helped me , even though I have had Crohns dx for 20 years! Let us know the results!

 

[Jessi]

Hey there, Foxy. I agree with Pen. I would just tell him that you want him to check your vitamin levels, regardless of his thoughts on there being no need. It's your bod, so you choose. You can do it politely, but adamantly. I feel confident that he'll be eating his words when he sees the results. You'll almost definitely need to be taking Vitamin D3 and others.

This is just my opinion. Be strong if you approach him, and good luck. :hug:

 

[Entchen]

Hiya: My GI is super laid back like your guy. Reported numbness and tingling in extremities -- he paused for half a second and then continued with his discussion about my large/small intestine (the only body parts he cares about). No bloodwork to check for vitamin levels, anemia, etc. (but thankfully my family doctor will help with this aspect of care). I developed two fistulas while the GI insisted that I was on the correct dose -- I finally convinced him to do some basic math and see that I was NOT on the correct dose for my body weight.

Tl;dr: If you can get a second opinion without causing yourself too much trouble, I agree with the others that it could be worthwhile!

 

[DustyKat]

I would say his answer is based on the fact that you have Crohn's in your colon rather than your small bowel. On paper you shouldn't suffer with deficiencies when it is only large bowel involvement BUT there are always exceptions to the rule and I agree that having them checked will certainly do no harm. It is does show a deficiency then you can jump on it, if it doesn't then it is a good baseline for future reference. So a win/win!

If you are uneasy about his care then definitely seek a second opinion. In the meantime can you get your GP to run the bloods for you?

Dusty. xxx

 

[chronic crohns]

I would ask him to do a blood test. Lacking Vitamin D can lead to us being on the forum in the first place. Calcium and magnesium and B12 are a few necessities in our system to not cause problems further down the road. If you are young, now is the time to keep levels up...not wait til later. Makes sense? You are a smart cookie to recognize this, oh and yes, the forum has helped me , even though I have had Crohns dx for 20 years! Let us know the results!

I agree, i also have had crohns for atleast 10 years now, (well diagnoses for 10 years! probably had it before) this time round i have been advised to take multi vitamins myself, i am getting weekly blood tests and red cells are down at the mo so we are keeping an eye on it, (flare up) but it is the exact vitamins as Pen has mentioned.. stay strong and focused and rested! :ysmile:

 

[Crohn's 35]

My daughter has also mentioned in her University Nutrition study that most doctors are not and do not require nutrition classes and most dont. We have to be our own advocate at times, if your doctor doesnt help you out, get a second opinion asap. :hang:

 

[Angrybird]

Totally agree with everyone, it just can't hurt to have these checked out. Also if you are starting to feel uneasy about your doc have a look into a second opinion, with a disease like this you MUST be able to feel confident that you will being looked after and taken seriously.

 

[shazz]

The fact that you are questioning your docs practice answers the question.
I doubted my first consultants advice and didn't do anything until I got a lot worse.
Get a second opinion. You have got nothing to loose and everything to gain.
Good luck Xxxxxxx

 

[okhoney]

Having a good doctor makes a world of difference. I have been through several and even then I feel as though I have to augment my treatment with natural methods that the doctors don't always. validate (i.e., dietary changes). I just started seeing a new GI and he has given me more answers and progress in 1 visit (and 1 colonoscopy) than I've had in the last 6 months. Getting your vitamin levels checked are incredibly important. I don't have Crohn's in my small bowel either, but even then I was still severely deficient in Vitamin D (my levels are at 8, 30 is normal), Folate, and am pretty anemic. I had no idea about the Folate, but when I was doing research, I found out that folate deficiency can lead to depression, weight loss, loss of appetite, mouth sores, and fatigue; all of which I was experiencing.

Long story short, I definitely think a second opinion is warranted. Since there is no "one size fits all" solution for this disease you want a doctor who is going to be able to treat you as an individual based on your unique experiences and history. The ability to listen and be thorough are two very important qualities to look for in a GI in my opinion.