Next GI appointment. Any help or questions I should ask please?

[bushydougie]

So I have my third appointment with my GI on Wenesday. I still do not have a diagnosis and am getting worried about the appointment and wondered if you have any advice or questions I should ask him? I know many of you have taken months if not years to get a diagnosis.
I am going to get the results of my CT scan but am fearful that they won't have found anything (as happened with my colonoscopy and biopsies). Could the Asacol I'm currently taking make it less likely that my results will be positive?
I've already got some great advice from some of you and shall be asking about my blood count, if I need any other tests (such as the barium enema) and if I can possibly go onto something like pred.
Sometimes I do just worry that everything is in my head and I'm really not sick at all but as my life has been on hold for the past 6 months I figure there really must be something wrong.
Any advice you can give will be greatly received!
And thank you in advance
Sam

 

[Cat-a-Tonic]

Hi Sam, it sounds like you're in the exact same situation I'm in. I still have no diagnosis, and my colonoscopy & biopsies were also normal. I also had a CT scan just last week and it was also normal. I would ask, if your CT is normal, what the next step is as far as diagnosic testing - my GI wants to do endoscopy and then barium x-rays next. I would definitely also ask about pred - I was prescribed a "trial run" of 10 mg per day for 5 days, just to see if it affected me at all. It did, it worked wonderfully, so now I'm on 20 mg a day and he's going to up me to 40 if 20 goes well, and then I'll taper down from there. My GI said he doesn't like to prescribe pred without a diagnosis, but he wants me to get some relief until I get a diagnosis, so he is monitoring me on pred pretty closely and is having weekly contact with me to see how it's going on pred. So depending on how cautious your GI is, he may not prescribe pred if you aren't yet diagnosed.

I would definitely ask what the next diagnostic tests would be, if there are any other medications he can give you to give you some relief from your symptoms (I'm also on Zofran for nausea and Lomotil for diarrhea - both work quite well and have few side effects). I'd also ask if this could possibly be something besides IBD (and not the dreaded IBS) - my GI raised the possibility that I could have Addison's disease, as that can mimic IBD symptoms (diarrhea, pain, nausea, low blood pressure, etc) and it responds to pred as well. I had a blood test for Addison's and it came back negative, but it was still something worth looking into. For me, it really helped to write down my questions ahead of time so I could remember what to ask my GI. I also brought my husband with me to my appointment last week so he could ask questions too, and that was really helpful.

Good luck, hopefully your CT scan results show more than mine did! I've been ill for about 9 months now with no diagnosis, so I know how frustrating it can be. Wish I could provide more help. Waiting for diagnosis is really miserable and I hope you at least get some meds or some form of answers that help you. Let us know how it goes!

 

[mikeyarmo]

Hi Sam,

First off - I know too well the feeling that I am making up my sickness in my head. I went through 2-3 years of not being diagnosed and having all sorts of symptoms without any diagnosis. It was disheartening to go through a procedure of some sort and be told that there was nothing conclusive found. I used to wonder if it really was all in my head and why I could not make it stop.

Do not stress over such matters... whatever is happening is happening and it will be resolved at some point. There is not sense having shame over something you can not control.

I do not know how Asacol will impact the findings. One of the things I can recommend prior to going to the appointment is ensure you have a written record of your personal history of symptoms and appointments you have had so far (including any medications/procedures and the impact/findings of each one).

When you meet with the GI you can refer back to the notes based as needed and it will help ensure you have as much information as possible to go over with your GI. For example he might say that something from the procedure indicates inflammation but he can not prove it, however perhaps there was another finding from a different procedure that also indicated inflammation.

Even if you do not refer to these during the appointment, this will help jog your memory of all that has happened up until this point and may become useful if you ever need to meet with a new doctor/specialist who wants to know your history so far.

Good luck and don't be afraid to take some time after your GI speaks to think about any questions you may have... I know sometimes you want to just get out of the place but that is the best time to ask any questions you might have.

 

[Entchen]

Hi, Sam

Been there, understand the frustration, and I feel for you, I really do. (The difference in my case was that every test did show a problem, but the docs kept saying it was a "red herring" and wouldn't be related to the problems I was reporting. Fatty liver? Red herring. Low red blood count, increased white blood count? Red herring. Never mind that these are common in Crohn's.)

Re. the Asacol, my GI indicated that medication wouldn't hide the signs of Crohn's, but if memory serves, others on this forum have noticed differences when on/off medication. Also, awful as it is for you as a person who is suffering, sometimes people will not receive any meds at all pre-diagnosis because of the (1) legal and ethical requirement to use meds only as truly needed, and (2) desire to not take the chance of masking important symptoms. So, you might not get more than Asacol before diagnosis. I also remember how difficult this was -- I was at the point of not being able to function, and still couldn't get help because the next test was always x number of weeks away.

Good that you're going into the appointment with a well organized list of questions and goals. One thing I would suggest is maybe not giving specific drug names when you ask if you can try something for the symptoms (especially the names of more powerful meds like prednisone). This type of question should indicate that you have done your homework, but instead, unfortunately, it can cause alarm bells to sound and cause your GI to wonder why you are seeking a particular drug. [This advice comes from my mom, who is a nurse.] It's unfortunate that, pre-diagnosis, we are at risk for being treated like malingerers, but that's sometimes the reality that we have to work with.

Hope your appointment goes very well. :hang:

 

[Emkat8]

I completely understand what you are going through. I'm still awaiting my diagnosis too after symptoms for the past seven months. I also have been prescribed Asacol but nothing else at the moment. I am all for the idea of making up a sort of time line of your previous appointments/tests you have had just so you don't forget anything during the appointment. I tend to have so many things I mean to say, but then I forget to mention them when I am actually there. I brought all my paperwork from prior tests I have had to my one and only GI appointment last week, and the Dr. seemed to find this very useful and spent quite some time looking over the results of everything. Good luck with your appointment Hopefully all will go well

 

[Nancy Lee]

Hi Sam and welcome to the forum.
I have been through a lot of what you're feeling...
no diagnosis and you begin to wonder if there really is something wrong with you.

Just relax and stay calm and it will be resolved one day.

I have been on Asacol for several years and it doesn't seem
to impact any tests I have one way or another.
Just make sure any further tests the doctor and nurses know what
you are taking and the dosage.

Welcoming Hugs~Nancy

 

[Keona]

Hi Sam,

Great idea. Eventually I had to do the same..write a list of questions because I had no idea what was going on. I wished I would have asked how available the doctor was or if I needed an appointment, how long will it take to get one. Sounds like your GI sees you with every test though as mine used the nurse practitioner and over the phone.
I thought it was all in my head but that is the message we get as women and when they dont want to figure out whats wrong... Women were always described as "hysterical" when really it was something medical and I think this societal message is still there. Men on here have also ben told it is all in their head I think.
You know your own body and keep pushing forward if you know there is something wrong and tests dont show anything.
Good luck on Wednesday and I hope you get the answers soon
Wendy

 

[bushydougie]

Hi Everyone,
Thank you so much for all your advice! It is helpful to know that many of you have had or are going through a similar experience (although I wish you weren't) and this makes me feel a little easier about everything.
I am currently making up a list of questions and points to raise with the GI tomorrow. Kelly - thanks for your advice re medication. I shall definitely take this into account. My GI did mention steroids at my last appointment but didn't want to give me them until I have a full diagnosis so I guess I can use that as my starting point when discussing meds
Wendy - I totally know what you mean about the seeming hysterical. Thats kind of why I wanted some advice from people who have gone through similar situations so that I can be calmer in my appointment and try not to be too frustrated whatever the outcome.
Cat & Emkat8 - I am sorry that neither of you are any nearer a diagnosis. I hope that you get the answers that you both need soon.
Yet again I have been amazed at this forum. It truely is such a great help to someone like me. So thanks again
Sam

 

[bushydougie]

Have been to the GI today. Cat, my story sounds like I am copying you so I apologise! My CT scan was clear as were my most recent blood tests. The next step is to have an endoscopy to check that I am not coeliac (apparently the blood test I had previously for this wasn't enough). He also mentioned the possibility that it might be IBS. I asked him if I would be struggling so much if it was IBS and he said that it could affect me this badly. I also mentioned that I had had d at night and night sweats but this didn't seem to deter him from this. I also asked if the Asacol could affect my inflammation levels and he said that it could.
I am so glad that I mentioned medication to him. He has decided to try me on pred. I start on 20mg for 7 days then start tapering by 5mg each week. He has said to try it and see how I go. He said that I won't get any of the side effects as it's such a low dose. Is this true? Also how quickly will I see any benefit if it does "work"? I am so hoping that it does!
At the end I also mentioned my back pain and he said that it sounds like IBD and the pred should help that. Oh I'm so confused!
I know that so many of you have been in similar positions so will understand my continuing frustrations.
Sam

 

[Cat-a-Tonic]

Sam, I think we must be long lost twins! Clear recent CT scan and blood work, endoscopy next, currently on 20 mg of pred but still no diagnosis - that's me exactly! My GI fortunately doesn't think I have IBS, since I don't meet the diagnosic guidelines (Regular Joe had posted them on another thread; I specifically remember that it said if you have had dehydration, unintentional weight loss, nocturnal diarrhea or bleeding that it is NOT IBS - so I would look for those guidelines and show them to your GI if he mentions IBS again).

I experienced a boost in energy and a reduction in pain & symptoms from pred shortly after starting it - maybe a few days or so. I just started on the 20 mg of pred last week, and I've still been having a little d, although much less than I was before. And my appetite's greatly increased too. So hopefully the pred starts working for you soon. Not sure if your doctor told you this, but it can cause insomnia, so take it first thing in the morning when you get up so that the energy-boosting effects have mostly worn off by bedtime. I was having insomnia issues before I started pred, and they've worsened since being on it, so I sometimes take a sleeping pill. I haven't experienced any other pred side effects so far. My GI is going to increase me to 40 mg and then taper me down from there if 20 mg continues to go well for another week or so, so I might get more side effects then.

When is your endoscopy? Don't say August 16th because that's when mine is! How weird would that be...

 

[bushydougie]

Hi Cat. Thanks for another great reply! Yes it does sound like we are twins with our mysterious illnesses! I had tried to remember some of the facts about IBS that I'd red (from Joe and on other sites) but couldn't remember it all. The GI said that there are two types of IBS and the one i "could" have can be started after an illness and your bowels just don't go back to normal. However I had an appointment with my GP today and mentioned this to him. He does not believe I have IBS as it would not affect my life so much. He really is a great GP and actually understands how much this is affecting my life at the moment. Something I don't thing the GI realises inspite of telling him a number of times!
My endoscopy is supposed to be in 2/3 weeks time so it could be before yours. Apparently I have the option to either have the throat spray or twilight. My friend recommends being knocked out for it!
And I am also getting a blood test to check my b12 and folate levels too.
Hopefully soon we will both have some concrete answers Cat!

 

[Cat-a-Tonic]

Hi Sam, I hope your endoscopy shows something! I'll keep you in my thoughts! And it seems like our paths are finally diverging, as I may not be having an endoscopy after all. I've been on the phone with my GI, GP, and the hospital all yesterday afternoon and all morning today. My GI seems to really think I have Addison's disease (his nurse told me that it says in his notes that he does not think Crohn's is likely anymore and that we should only pursue that avenue of testing if I really want to). I had a cortisol blood test for Addison's last week, and that came back normal, but my GI really thinks that with my symptoms and the fact that I have no evidence of inflammation or IBD, that this is seeming more likely to be Addison's. So, I'm going to have another test for it, and hopefully this one shows something. I'm going to pull my hair out if I have one more test that comes back normal! And I'm pretty sure you know that feeling all too well, too!

I really hope your endoscopy shows something so that you can get some answers and some relief. And I hope in the meantime that the pred works for you as well as it worked for me! They told me to stop taking pred for now (I was on it for less than a week so it's safe to stop cold turkey if it's been a short time), as it can skew the results of this Addison's test that I'll be having. So I'm hoping to get this test scheduled ASAP so I can go back on the pred once it's over. (That's why I was on the phone with my GI, GP and the hospital - my GI ordered the test, and I was told it would have to be scheduled through my GP, but when I called them, I kept getting the run-around and was finally told that I have to have the test at the hospital, but the hospital isn't on the same computer system as my GP and GI are, so they didn't get the order for the test, so I had to call my GI again to have him fax the orders over, and that's where I'm at now! I wish the medical system was less confusing!)

Keep in touch and let me know how the endoscopy goes. And I'll let you know how the Addison's test goes. I really hope we both have answers soon!

 

[bushydougie]

Please let me know how you get on. I hope the test happens soon then you will know one way or the other at least. It is good that your GI is pursuing different avenues so that you should get a definite answer. Even if there is some confusion as to where to get the test!
I'm on my third day of pred and today I feel so close to my normal self. It has made me so very happy! I do hope it continues. Hopefully you'll be back on it one way or another to help your symptoms soon enough.
Take care
Sam

 

[Entchen]

Hi Sam: HAPPY for you! Wonderful that only 3 days on the new med has helped you so much.

 

[Silvermoon]

Hi Sam!

A belated "Welcome" to the forum! Glad the prednisone is giving you some relief...it can be a nasty drug, but it can be wonderful as well!

So glad that you and Cat were able to talk, as you two seem to have a lot in common. And I am very happy to hear that at least your GP is on your side...you need an advocate "in the know" at this time.

The main thing to remember is: keep looking until you find the answer. Whatever you are going through, it is obviously not in your head...it may not be IBD or even IBS...it may not be Addison's...but it IS something, and don't let anyone tell you different.

If this GI doesn't seem to agree, I think you would have your GP's support to find a different specialist.

I wish you all the best.

 

[bushydougie]

Hi Silvermoon,
Thanks for the welcome!
You are right to say about being cautious about my diagnosis. Although this is hard when you've been ill for ages and as soon as the doctor mentions a possible diagnosis you jump on it! 5 days into pred and it still seems to be making me feel a whole lot better so at least I have that positive to go on.
It really does help having such a supportive gp

 

[Cat-a-Tonic]

Sam, I'm so glad to hear that the pred is working for you! It sounds like you're doing really well. I hope you do get some answers from your endoscopy, but in the meantime I'm really glad that you're getting some relief and feeling better.

 

[bushydougie]

Thank you Cat. It is such a relief at last to be feeling close to normal. I feel like doing things again, at last!