GI appointment, advice needed!

[Jam300]

Hi all, hope everyones in good health.

As some of you may remember, i'm partially undiagnosed. In that I was diagnosed with Crohn's when I was 14 (now 21) but was never actually treated for it, bar a liquid diet for two months. After what seemed like a long wait i'm seeing a GI on Thursday.

Just wanted to ask what to expect from a session like this really. I'm assuming he won't put me on something immediately, there'll have to be some sort of tests first?

I've been doing my best to educate myself over the last two months that i've spent on this forum (and done quite a good job if I do say so myself). But from my more well versed Crohnies, what would you recommend that I ask/insist on at this appointment? Vitamin levels, ect?

I must admit, it's really starting to feel daunting the last few days. I feel nervous, I feel scared.

Best wishes everyone!

 

[moogie]

If the doctors do not know what you have indeed there should be test. after that they can decide the course of actions.

When i go see my GI i bring a note book and i have listed all my questions. this way i do not forget anything.

good luck to you.

 

[araceli]

Hi all, hope everyones in good health.

As some of you may remember, i'm partially undiagnosed. In that I was diagnosed with Crohn's when I was 14 (now 21) but was never actually treated for it, bar a liquid diet for two months. After what seemed like a long wait i'm seeing a GI on Thursday.

Just wanted to ask what to expect from a session like this really. I'm assuming he won't put me on something immediately, there'll have to be some sort of tests first?

I've been doing my best to educate myself over the last two months that i've spent on this forum (and done quite a good job if I do say so myself). But from my more well versed Crohnies, what would you recommend that I ask/insist on at this appointment? Vitamin levels, ect?

I must admit, it's really starting to feel daunting the last few days. I feel nervous, I feel scared.

Best wishes everyone!

Hope everything goes well. Don't leave the Dr. office until you feel he answers all your questions. In my daughter's case, it was a colonoscopy and endoscopy along with sedimentation and CRP test that gave us the diagnostic.[ Crohn's at terminal ileum.]Also some Crohn's is located in a part that only can be seen in a MRI. Good luck and best wishes.

 

[CrohnsChicago]

I imagine since you have not seen a GI in a while, he will at the least go over your health history with you, feel around your gut/abdominal area for sensitivities and abnormalities and determine what lab tests he would like to perform to get further information about you.

Make sure you are completely honest about your condition/symptoms and it would also be very helpful to have a list of questions/concerns you would like answered. Regardless of how he answers, you will walk out with a better understanding of whether or not you would feel comfortable with this doctor treating you. I think it's very important to be able to establish a solid level of trust with your GI since they will be handling treatment of a very personal issue and very private part of your body.

Wishing you the best of luck!

 

[Jam300]

Thanks for your repeated help Chicago, you've been a great source of comfort to me whenever i've posted. I've written down a few questions I wanted to ask, was just curious if anyone had any questions I should specifically be asking, but it sounds like from this that the GI will know what to do almost..

 

[shamrock15]

You could try posting the questions that you have decided on here, and that may spur some others. I know I always think of ones to ask after I have left. Make sure you document your symptoms, ideally including time of day, anything you may have eaten, severity. You may notice some foods that you should delete from your diet by doing this. Have a list of your medications that you are taking. I haven't read of any other conditions you have, so make sure that your doctor is aware of any others that you have so that they can be considered in a treatment plan. If you are placed on some meds, make sure you ask about side effects, symptoms for reactions, dietary modifications, how to maintain your health during attacks, what symptoms you should watch for as signs that you need to proceed to an emergency room. These are some of the possibilities. Keep a notebook handy and jot them down as needed. Good luck!

 

[Jam300]

My questions so far would be I suppose:

Why don't I display symptoms?
How conclusive was my diagnosis/was it wrong?
How do we heal my swollen lip?
Where is my Crohn's located according to my previous diagnosis? (will they have acess to this information?)
Am I likely to be deficient in any vitamins?
How do you feel about Low Dose Naltrexone?

Any glaring things that i'm missing?

 

[CrohnsChicago]

Can you call your former GI office and see if they can transfer your records with them to the new doc so he can look over them?

I think these are good questions to start with, I'm sure more will come to you as you look around this site and when you are speaking with your GI directly. And if you forget to ask something, you can always call him/her or ask at the next appointment.

 

[SarahBear]

Quick question - what do you mean by partially undiagnosed? It sounds like you were diagnosed and just not properly treated.

May I ask what test(s) diagnosed you before, if you know?

As everyone else has said, they might want to do more tests since it's been a while. I'd expect a colonoscopy, at least. As long as they have your medical records, they should have access to your previous test results, but scopes usually need to be done every few years anyway. They should know from your records what tests need to be done.

Personally, I'd try to go over the treatment possibilities a little bit, even if they're not going to start you on anything yet. That'll give you some time to look things up and get some more information on your own. I doubt they'll be able to give you a solid answer, but a few "maybe"s based on your records and how you're currently feeling might give you an idea of what they're likely to prescribe.

I hope everything goes well!

 

[Jam300]

I'm afraid I can't call my previous doctors office for my records Chicago as I have no idea where it was that I was tested or who by. As I said nothing was really explained to me when I was younger so I just sort of assumed I was cured and forgot about it, seems silly now.

Sarah, I was diagnosed by Colonoscopy/Endoscopy and a Lip Biopsy I believe, though the results of the test I cannot remember. I question my diagnosis because as far as I am aware in the ten or so years i've exhibited swollen lips (what caused me to finally be diagnosed) this has remained my only symptom despite the fact that i've remained unmedicated, drank and smoked heavily, and eaten a fibre and nut heavy diet. Though I understand that everyone is different, some are even asymptomatic I find it strange considering everything i've read on this forum about people who don't take their meds. I know that I probably do have Crohn's, but I feel I can consider myself partially undiagnosed until I at least know; where it is, how severe it is, what medical options I have ect. Perhaps i'm just in denial too, but a little optimistic part of me wants to remain open to the idea that a doctor could say that actually my test results were inconclusive and that in fact I don't have Crohn's. That may be naive, but considering i'm about to find out for sure, why be pessimistic about it ey?

 

[SevenOaks]

First off, i'm diagnosis but have had the issue since I was a young boy (i'm 29 now). I've been to the hospital 3 times and after many procedures the GI doctor, "Isn't convinced" what the real problem is. I have all the symptoms of CD so I treat it, holistically, as CD.

I make sure to ask my GI doctor about any vitamin deficiencies that are detected in the blood and after any procedure, I make sure I get the lowdown on the appearance of my colon. My greatest fear is cancer. I'm fortunate that my cousin is a Program Director at Fight Colorectal Cancer, http://fightcolorectalcancer.org/ and she has given me great insight into the cancer.

READ THIS!

If you are on Prednisone, be aware that it will destroy your bones. I bet you weren't told that, I wasn't. Even though I'm currently on it for 3 weeks, I've been taking a calcium supplement to ensure that my body isn't deprived and my bones don't take the slightest of hit from it. I suggest a calcium, vitamin D pill. It has made me feel great.

Good luck!

 

[tots]

Jam300

You are dealing with alot at your age.

Its a lot to absorb- two things-

Listen to your body- you are your best advacate- dont take no for an answer

Ask questions until you understand everything the Dr tells you. That way you know the Dr is really addressing all your concerns!

Lauren

 

[Scaryman]

Looks like people Harrity have my suggestion covered by taking a pad of paper writing questions down. My question should be around why your diagnosis or on diagnosis. And start branching out from there like in Treebranch. Meaning why my undiagnosed why haven't they been able to give me a diagnosis what's the problem and what can we do to get a proper diagnosis. Raw here to help as you know let us read your questions and maybe we can give you some feedback.

 

[Jam300]

Thanks for the suggestions everyone, you're a good bunch

I'm going out for a big meal at a japanese restaraunt tonight. If this could be my last night of carefree living, may as well enjoy myself!

My appointment is at 9am tomorrow, will come back with updates.
The night before, what a daunting experience!

 

[Scaryman]

Thanks for the suggestions everyone, you're a good bunch

I'm going out for a big meal at a japanese restaraunt tonight. If this could be my last night of carefree living, may as well enjoy myself!

My appointment is at 9am tomorrow, will come back with updates.
The night before, what a daunting experience!

Please be careful and don't go to crazy. I know Asian food and I don't agree so well.

 

[Jam300]

Thanks for your concern Scaryman but as I said i'm symptomless as far as i'm aware.

So the big reveal was today, lots of interesting and exciting information. First of all I met my GI, will post a review of her later (she was very good). I finally got hold of my history: I was diagnosed in 2005 with Crohns in the Terminal Illeum and Orofacial Granulamatosis.

She said that i'm likely in one of two boats:
Asmyptomatic Crohn's which they will treat once they have the results to prove it.
Crohns in spontaneous remission which she said may not nessescitate medication if I am closely monitored.

She has scheduled me for a Colonoscopy and MRI in a couple of months in order to find out how i'm doing, followed by an appointment to discuss the findings and treatment options. Was also sent for bloodtests, for Coeliac and to check my Kidneys and Liver (for what exactly?) and another blood test called TPMT(I think..What is this?).

She said if inflammation is present I will most likely be put on Azathioprine, which I took as positive sign that i'm quite a mild case.

Also had my stomach and lower back prodded by her and a student nurse, not really sure what that was all about but it didn't cause any pain or discomfort, is that a good thing? What does this indicate?

All in all, a lot learned and a massive weight off my mind tbh. What are your thoughts Crohnies?

 

[Scaryman]

Glad to hear your on your way to getting answers. As for the questions you've asked I'm not sure as my CD is very different. Someone can and will answer this though.

 

[SarahBear]

Either of your boats sound like a fairly good place to be, but I'm hoping your asymptomatic Crohn's is in remission!

I don't know for sure about the liver and kidney tests - someone else probably has a better idea. It's most likely just precautionary. I know they checked things like that before putting me on methotrexate - because it can cause damage to the liver and they wanted to make sure it was capable of handling the medication. Don't hold me to it, but I think there's a small chance Azathioprine can have a similar effect (as with about any medication).

As for the other test, check out this wiki page: TPMT

I will mention (as you seem to be worried about it) that if you have no issues with any types of food now, you're unlikely to develop them unless you begin to feel symptoms or flare. If the foods don't aggravate your stomach, there's really no need to avoid them (unless you chose to go on a diet to further improve your health). Eat all the Japanese you want! We'll all live vicariously through you!

I'd say it's good that you felt no pain when they prodded you. I'm assuming pain when prodding would mean sensitivity, and probably inflammation. I don't know for sure, and it's certainly not foolproof (I am extremely sensitive to the prodding, hurts like crazy, but apparently have no inflammation or active disease). In general, no pain is a good sign!

Please let us know how the upcoming tests go.

 

[CrohnsChicago]

The TPMT is a genetic blood test. My doc is having me tested as well. From what my doc explained to me it is a blood test that examines the gene that will let him know whether you metabolize thiopurine drugs well or not. It will help do determine whether to start Azathioprine gradually or if you can start the higher dose immediately. Also it may help indicate how likely your body is to react negatively to the medication/experience major side effects.

No pain during poking or prodding is usually a good thing, yes.

It would be nice if you didn't have to go on medication but definitely wait until all of your tests come back and discuss it further with your doctor.

Glad you got some answers. Sounds like your exam went well overall. Be sure to follow up with your doc regarding the additional questions you presented us with

Best of luck!

 

[Jam300]

I'm incredibly relieved today, having finally seen a GI and gotten some answers. I don't think I was really that worried about having Crohns, more just what i'd find out while at the GI's. An unknown illness is quite scary as you could get told anything.

One thing that does concern me is the idea of being on medication but I think a lot of that is about perspective. It's natural to be worried about side affects, but then paracetemol has side effects I suppose.

Thank you the both of you, interesting to hear your input on the situation. It does feel that with the correct balance of this forum's members and doctors you finally begin to get a full understanding of this illness! Thanks again to Sarah and Chicago, both have been particularly comforting to me during a tumultous time (as has everyone!). If anyone has more insight into the prodding tests and other things I asked about i'd still love to hear from you!


EDIT: Forgot to add. I'm suprised by the doctors immediate suggestion of Azathioprine, is this standard procedure now in the UK? Is there a more mild drug option available?