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My GI appt.....not so good

Well....good thing i didn't have high hopes, because the minimal hopes i did have came crashing down right there in the office. I was bawling.....Anyways...So, seems that i *may* have the startings of an IBD, but if so, it's too early for treatment.....he managed to get into my ileum in the colonoscopy, but it was fine. Biopsies, inconclusive. He told me to taper off the pred, 5mg/week, wasn't too impressed that my doc. put me on it, but i don't care....at least i get 8 more weeks of it with the taper, it's the only stinking thing that's helped, for crying out loud! He was saying 50% of Crohns starts in the ileum, and didn't seem to worried about doing a gastroscopy or anything...until i pushed, and he booked it....for Sept. He's put me on some florastor, and wants to see me in three months. Great. thanks buddy. And what the heck am I supposed to do in the freaking meantime?! ARGH. So, i've called my GP and have an appt. tuesday, where i will be asking for a second opinion. I"m not planning to wait until september, this is bollocks. I'm so done. I bawled all the way home, and just don't know what to do anymore. He was kind, sensitive, but doesn't seem too overtly concerned. Which, i mean, he has to deal with this day in and out, and weed out the most important, and i get that it's hard, but yeah.....obviously right now i feel i should be at the top of the list. I'm just done. I seriously...i just don't know what to do, i want to jump off a freaking bridge. Obviously i won't, but damn, is it tempting. I just want to stop hurting, i want to be intimate with my husband, i want to go back to work, i want to be able to explain what's up, instead of just feeling like it's all in my head. I just don't know what to do. :(:depressed:

Crohn's 35

Inactive Account
Oh Pam!!!!!! I know your pain and I have been there in my early dx 18 years ago. You feel lost and what is going on!!! You know it is not all in your mind but doctors make you think it is. I couldn't change GI's there was only 2 and one was on temporary leave, only to find out he did think I had Crohns' it was the stupid surgeon who had an ego big as China! I went to a different hospital, tested from mouth to intestine and barium shot thru it, and done... dx after all those test and scopes and being sick in one test!!! Fresh eyes could be what you need. You do need to see someone who is experienced and willing to go the extra mile and get a dx done.

Hang in there, keep your chin up, we all know you are suffering, and help will be there soon. Hugs!
Thanks ladies. I'm treading water, just keeping my head above the surface right now. I'll be ok, i know i will, just feeling dejected right now....But i'm going to keep fighting, i'm not just going to take whatever this is laying down, that's for sure. i talked to my Mom and got the name of her GI, and she got in relatively quick with her recently, so i'll try to get an appt. with her, and go from there i guess.


ele mental leprechaun
Sigh, this just isnt fair at all on you Pam!

It can be so demoralising going through all these tests etc only to have the bubble burst with a "kindly" but frustrating plan that is way too far ahead in the future and inconclusive results.

Totally understand why you feel as you do honey. Glad you felt you could come and talk to us about it.

Keep posting, we will help where we can.



Staff member
Sorry to hear of your pain and frustration.
To have to wait until September for a work up which should already have been completed is unacceptable to say the least.
It seems that all these GI specialists seem to organise our lives at three month and longer intervals.
It is all so mechanical and uncaring. A good doctor will comfort always.
Unfortunately since government has taken over health care it would appear the system has gone from bad to worse and we do not receive the care we need in a timely fashion.
Sometimes a good family physician can help through those times.
It is quite possible that the predisone may be masking your symptoms since it is a potent anti inflammatory.
It will be a telling time when you no longer take it but I can certainly understand your anxiety in being left without it.
It does look as though you would definitely benefit from a second opinion.
You should not be left feeling the way you are and the GI should have helped you through this in a better way.
Crohn's can be an elusive diagnosis at the best of times and there are plenty of instances in this forum.
I was quite shattered to be told I had Crohn's, especially when I had gone for a colonoscopy and had the precancerous polyp removed.Then to hear at the follow up (3months later!) that I also had Crohn's was a bit over the top for me.
The biopsy was clearly positive for Crohn's.
Now I know from reading your story (and others) that I was fortunate to be diagnosed and treated so quickly.
These experiences do rather space one out though and even now, a year later I still have difficulty accepting the reality of it all.
Hope you will soon be feeling a bit better.
((((HUGS)))) and prayers
Pam: I'm really sorry to hear about your struggles with getting a diagnosis. My first serious IBD flare was when I was 8, and I was in so much pain I don't really remember much about it. But my lovely mom took charge of my healthcare and didn't give up even though so many of the docs made her feel like the problem was in her/my head. As I was in the hospital slowly bleeding to death I was diagnosed with Crohn's by a traveling physician. Bless him, wherever he is, for noticing that the problem wasn't in our heads but in my gut!

You deserve a lot of credit for not giving up in the face of all the "inconclusive"-ness. I hope that you don't have to go through too many more docs before one of them figures out the cause of your problems so that you can get on to an effective treatment!



Hang in there. Not knowing is the worst. And waiting till September in a state of limbo... not acceptable! Hope you get in for that 2nd opinion soon!



Hi Pam
I can only say the things that everyone else has, totally unacceptable! and soul destroying, been there, done that!
I hope you find some peace this weekend and answers on tuesday,
will be thinking of you and hope your pain eases
big hug your way
Love Joan xx
I'm sorry that you are having a tough time.

There are no such things as incurables; there are only things for which man has
not found a cure.
-Bernard M. Baruch
Sorry to hear this darl!
This is not cool at all you are having to wait this long. Yer I agree with the second opinion. I dnt rly know what else to say... Grr doctors make me so mad sometimes. September?!?!? Its just ridiculous. At least your G.P sounds supportive. Hang in there!
x x x x x
Thanks everyone. I've been floating around, but don't feel so much like posting today. I'm just in a bit of a funk, but i will come out of it. i'm having some new pain today that i'm not liking so much, i'll keep an eye on it, my upper mid abdomen is really hard and super extra tender....blah.

thanks again for your thoughts, it means so very much.
Hi Pam

just wanted to say totally know how you feel.

Im feeling really down now and pretty much ready to give up with the medical proffession as i think they want to give up on me.

My colonoscopy got stuck at the first turn in my colon, the biopsies showed inflammation but ive been told its IBS/ Food intolerence. Maybe it is? i just dont know.

I know my suffering is real but I feel like no one else does.

I totally admire you for seeking out another opinion, its the right thing to do. I just wish i had your strength.

love and hugs

clover x
Pam, so sorry that you are going through this. I truly wish you were feeling better and not feeling so blue. I was told by the docs at a Boston Hosp. that they had done every possible test on my (read back on some of my prev. tests it may help).

After all of the tests and having more things stuck up my bum than a tester at a suppository factory, I still do not have an official diagnosis!! I tend not be as popular with the physicians as I am a very strong advocate and will not be talked over or rushed by their busy schedules or egos.

waiting 'til sept is absolutely unacceptable! No offense intended at all but if you have to wait that long you will likely be in a similar state of anxiety and depression as I.

I once had a doc walk into my room and start looking at my chart and speaking above me to the nurse. I promptly asked him who the !#!%##%^ he was and if he couldnt introduce himself properly then get the !@#$#%$ out of my room. He wasnt amused by i sure was.

Hang in there dear, if i can be of any support you can pm,email me. Take good care of yourself.
Sorry to hear what you are going through! I can relate in a way, because I was a very sickly child for years before I was diagnosed at age 9, and was told to just go to counseling, and basically suck it up and go to school...then finally they found out what was wrong with me. But if you don't feel satisfied with your doctor, you should definitely find another one. It's so important to be able to trust your doctor, and have faith in him/her that he/she is doing everything in their power to make sure that you get the best treatment/diagnosis possible. Good luck with everything!
So sorry Pam. I think if you have a gut feeling (no pun intended) about the GI maybe it's a good idea to get a second opinion.
hey again. :) I've been pretty down the past few days, and have been reading but just haven't felt so up to posting. I'm feeling a little bit of renewed hope today, but still not completely up to par.

I went to see a GP today (Mine is on holidays, so another one in his office) who was very kind, listened to my concerns, and agreed that a second opinion is in order. he has put in a referral for the GI my mom recently saw. My understanding is that she books a colonoscopy and does the initial consult the morning of. I have also asked for an endoscopy, i'm not sure if that will be booked or not. The receptionist says she believes their wait list is about a month....Not great, but better than September! LOL. So yeah...that's about where things are at now.

We also talked about my pred taper, and although it has been helping, i am going to speed it up a bit, going down 5mg every few days as tolerated, so as not to have it masking any inflammation when she does the scopes. I am also taking the Florastor the other GI prescribed, we shall see if it does anything for me. :) I talked to the doc also about a SBFT and he doesn't seem to think it's nescessary, but we'll see....i'll talk to my family doc. about it again next time i see him. So, i'm more or less happy with the results, i feel like my GP and his peeps are really here for me, and will help me get to the bottom of things. It just might take some time, unfortunately. :(


Punctuation Impaired
Better news Pam.....:)...A month wait is pretty fast for a scope out here. I know you will get to the bottom of these problems.
Hi Hun, Im so sorry to hear you are still no getting any answers I do feel tho that a second opinion would be of benefit. Thats total crap that you should have to wait till Sept when you are feeling like death! Is there any possible way of going private over there? Im not sure how your health system works over there? I know here going private pretty much gets you in heaps quicker I had my colonoscopy within 3 days of seeing my GI. Don't know if this is an option for you tho?
So have you never had a SBFT? I thought that would have been the next test they preformed to determined if you had any narrowing etc.
Im glad you are being proactive and getting thing speed up, hopefully you can get somewhere soon. Chin up honey.


Hi Pam
this is more like it! encouraging news and maybe you will be able to chillax now that someone else has listened to you and addressed it
sending big hug your way
Joan xxx

Crohn's 35

Inactive Account
Hey Pam most Canadian Gi's are backed up for 4 month plus! Once you are in, the appts are closer but ya know makes me think... who really wants to look up people's butt for a living and go eat lunch or dinner lol.

Sorry to hear about your situation. I've been in the same boat where you walk out of your GI's office in tears feeling hopeless.

The thing I've found is that the mainstream medical approach to treating Crohn's is proven to have a low success rate. Taking matters into your own hands and following other methods like SCD diet can be very empowering knowing you have some kind of control over the disease....at least the symtoms. I still work with my GI but have gone against his recommendation of trial drugs and further surgery and here I am still today prednisone free almost a year later.

My point is there is hope! You just have to go out and find which method will work for you and realize the learning process never ends!

Good Luck!

Hey guys. :) I'm ok, i'm in here reading often, but really just not feeling the posting, sorry! I'm really blocked up right now actually, i haven't had much more than raisins since Monday....hoping that changes soon! I'm really sore, have a constant stitch in my right side....pretty much back to where i was before i tried the cipro/flagyl at the beginning of jan. :(

Crohn's 35

Inactive Account
Raisins are hard to digest and fiberous but for some reason those suckers either pass through nicely or they don't. I don't eat them. Hope you feel better soon!

Crohn's 35

Inactive Account
Ha, sorry, I must of misread... damn Prednisone, damn LOL. That is still not good, it could be narrowing and you are not passing very well, must be bloat city for you? And still alot of pain? Hang in there, kiddo.


Hi Tam
hope you are ok hun, thinking of you
If this was happening to me, I'd go to A&E, but I don't know how it works for you in Canada or US, can you just phone for an ambulance there, like you can here in the UK?
I was blocked but didn't know and in agony so we called an ambulance, glad I did, cos it saved my life
big hug your way
Joan xx



Raisins suck! What are you eating? I found some things that are helping me when I feel like crap. Hit me up with a PM or FB I'll give you a recipe.
Thanks again everyone. :) I managed to have a bit of a poop today, but back to my pre-pred pencil poops. :( I've been tracking things, so i'll keep an eye and if they don't step up soon i'll get to the doc. I haven't been eating much either, so that could be part of the problem......Pretty much 2 boost a day, chicken noodle soup once or twice a day, a few pieces of toast a day, some canned fruit/applesauce.

The pain is bearable....i'm not comfortable, but it's not as bad as it has been.
Just wanted to let you know that I have been where you are a million times and know how it feels to feel like you are not being taken seriously when you feel like crap (that’s a lot of feelings). The wait is a killer too. We are here for you and we understand.