Hello my real name is Cheri and this is my story

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Zeppy321

Zeppy321

Joined
Feb 13, 2014
Messages
187
Zeppy is my cat :ylol: I am a 35 year old female diagnosed with Crohns about 3 years ago after many years of being told I had a stomach bug. I finally saw a very smart ER doctor who ordered a ct scan followed by a hospital stay where I had a colonoscopy with biopsies and properly diagnosed with Crohns. When I was released I saw a GI who prescribed Pentasa. I was a busy mom of 3 and didn't really look into my disease ( I thought great now I know what I have not just the flu every month for years! ) so I thought I'll just take these 8 huge blue pills everyday for the rest of my life a I'll be fine. Oh how I wish that were true. After about 6 months on the Pentasa I ended up back in the hospital with a bad flare and my GI said the drug was not working and I would need to start on Remicade infusions. Long story short the Remicade made me feel worse than the Crohns so I stop going for the treatment and to my GI altogether. All was great for over a year and I thought these doctors were crazy nothing was wrong with me and I could manage this disease by myself. Of course I was wrong. I've been hospitalized 3 times since October. I currently have a partial obstruction and am taking aza 50mg daily and percocet as needed to manage pain ( yes I know this could cause constipation - I find it slows down the D which I find awesome ! ) Anyways I don't have a great connection with my GI doctor so I usually try and see my primary care doc first with all that ales me and on the 19th of this month at my appointment with him he said the aza is not working and that is why my white count is still so high. He ordered a ct scan and I should have the official results on Monday I don't know if I need to up my dose of aza or try something else. I came across this forum when I started researching Crohn's (I'm sick of being sick )about 2 months ago and found it wonderful and awful that many people are going through the same issues I am. I have posted a couple things and got some great advice . I am very greatful I found you all . Talk to you soon.
Take care of yourself , Cheri or Zeppy if you prefer :ghug:
 
Welcome to the forum, Cheri!

Sounds like you've had quite a journey. Could you ask your primary care doc for a referral to a new GI, if you're uncomfortable with the one you have? A primary care doctor just doesn't have the knowledge, training, and experience a GI has, so your care may be lacking because you're not seeing a GI. In your situation, I would definitely seek out a new one. You deserve a high level of care from a doctor you're comfortable with.

I hope things get better for you soon!
 
SarahBear said:
Welcome to the forum, Cheri!

Sounds like you've had quite a journey. Could you ask your primary care doc for a referral to a new GI, if you're uncomfortable with the one you have? A primary care doctor just doesn't have the knowledge, training, and experience a GI has, so your care may be lacking because you're not seeing a GI. In your situation, I would definitely seek out a new one. You deserve a high level of care from a doctor you're comfortable with.

I hope things get better for you soon!
Click to expand...

SarahBear, My primary care doctor is aware of my dislike for my GI. He gave me a referral to see a new GI which was in the next state over (only about a 25 min. drive ) and basically this GI said I need to stick with my current GI because he did not think he could provide me with adequate medical care because he is not associated with the hospital in my state :yrolleyes: My primary doc gave me a second referral and they will not see me either due to hospital affiliations. So I guess if you live in my town and don't have the greatest medical insurance your stuck with this GI - like it or not No one else will see me.
 
At one point I was going to stay with a GI I did not like. My approach was to read up on Crohns, the tests, my tests, and be much more of a demanding and educated patient. If I don't like the guy, fine, but I am going to command the situation from an informed position. So, make sure to get your pathology write ups and ask questions and probe the findings on your own.

Any chance there is someone else in the practice you can see?

Zeppy321 said:
SarahBear, My primary care doctor is aware of my dislike for my GI. He gave me a referral to see a new GI which was in the next state over (only about a 25 min. drive ) and basically this GI said I need to stick with my current GI because he did not think he could provide me with adequate medical care because he is not associated with the hospital in my state :yrolleyes: My primary doc gave me a second referral and they will not see me either due to hospital affiliations. So I guess if you live in my town and don't have the greatest medical insurance your stuck with this GI - like it or not No one else will see me.
Click to expand...
 
Zeppy321 said:
SarahBear, My primary care doctor is aware of my dislike for my GI. He gave me a referral to see a new GI which was in the next state over (only about a 25 min. drive ) and basically this GI said I need to stick with my current GI because he did not think he could provide me with adequate medical care because he is not associated with the hospital in my state :yrolleyes: My primary doc gave me a second referral and they will not see me either due to hospital affiliations. So I guess if you live in my town and don't have the greatest medical insurance your stuck with this GI - like it or not No one else will see me.
Click to expand...

Could you bring this up with your primary care doctor and see if they can refer you to a doctor who will accept you as a patient? There may be more options.
 
SarahBear said:
Could you bring this up with your primary care doctor and see if they can refer you to a doctor who will accept you as a patient? There may be more options.
Click to expand...

I will bring it up at my next appointment.Thanks. I am having severe pain right now and feel like I might need to go to the ER just to get a GI to help me. I'm going to try laying down with a heating pad . Thanks for the reply.
 
Hope you are feeling better Cheri, if you are hurting real bad go the ER. Keep us posted on how you are feeling. Sending :ghug: your way.
 
mrjohns2 said:
At one point I was going to stay with a GI I did not like. My approach was to read up on Crohns, the tests, my tests, and be much more of a demanding and educated patient. If I don't like the guy, fine, but I am going to command the situation from an informed position. So, make sure to get your pathology write ups and ask questions and probe the findings on your own.

Any chance there is someone else in the practice you can see?
Click to expand...

Hi mrjohns, Because I feel why GI doesn't listen to me when I say I don't feel this particular drug is working for me or I am having these side effects, etc. I have really begun to read up on Crohns ( that's how I found this site :smile: ) I have never even seen one of my ct scan and the only blood work results I have were given to me by the ER. Who would I request my medical records from - my primary care doc or my GI doc ? Thank You for the advice. I am not sure if there is someone else in the practice I can see but I will look into it.
 
My medical system has a nice website that has the pathology reports online, which is cool. You would request the record from which ever office has them. Assuming the CT etc. where requested by the GI, fill out their form. If your primary care doc requested anything, request them from them. During my surgical consult, the surgeon whet over my small bowel follow-through and CT scan graphically. I couldn't really read them. I almost find it hard that they can, but I guess they know what good looks like and what bad does. So, they are doing a mental comparison vs. just looking at what they see.

Everyone on here has talked about B12, D, and iron deficiencies. I have requested those and found I was low on D.

Zeppy321 said:
Who would I request my medical records from - my primary care doc or my GI doc ?
Click to expand...
 
mrjohns2 said:
My medical system has a nice website that has the pathology reports online, which is cool. You would request the record from which ever office has them. Assuming the CT etc. where requested by the GI, fill out their form. If your primary care doc requested anything, request them from them. During my surgical consult, the surgeon whet over my small bowel follow-through and CT scan graphically. I couldn't really read them. I almost find it hard that they can, but I guess they know what good looks like and what bad does. So, they are doing a mental comparison vs. just looking at what they see.

Everyone on here has talked about B12, D, and iron deficiencies. I have requested those and found I was low on D.
Click to expand...

Thanks mrjohns. I don't know if my doctors have the online system for medical reports but that is something else I will ask about. Also I know I wouldn't be able to read my ct scan but unlike you my doctor has never even gone over it with me. My GI hasn't even ordered any blood tests which I thought had to be done regularly when taking aza. I'm just trying to learn as much as I can because I feel like I have to be my own doctor. I don't know.:ybatty:
 
I agree, the testing is important. It will sometimes give early warning of side diseases caused from taking the drug.
 
I know blood tests are important mrjohns and durwardian I just hope my GI knows that too. I made an appointment to see him on the 6th of March . Guess I just have to wait and see what he has to say then.
 
Hi Cheri welcome :welcome:
That was my motto in the beginning, (I'm sick of being sick) I didn't like my first consultant like you I just couldn't relate to her.
She had such a huge chip on her shoulder I'm convinced it made her walk funny.
Anyway I'm meeting my GI for first time end of march. hopefully he'll be more approachable
Wish you all the best
Steph
 
Just an update my GI can't see me till the 6th but the inflammation shown on my ct scan is killing me - lots of pain in the lower part of my stomach on the right hand side and also pain on the right side lower back. Back pain is new and it sucks !
 
Hi Cheri I'm sorry to hear that,
will your doc prescribe painkillers even? surely the're not gonna leave you in that much pain
for almost a week. I'm temporarily on co-codomol
 
steph_irish said:
Hi Cheri I'm sorry to hear that,
will your doc prescribe painkillers even? surely the're not gonna leave you in that much pain
for almost a week. I'm temporarily on co-codomol
Click to expand...

Hey Steph Yes my doc gave me percocet for the pain . It helps most of the time but sometimes shortly after I eat it doesn't really even touch the pain.
 
steph_irish said:
3 days to go please let me know how you get on :ghug:
Click to expand...

Thanks for the support Steph . Yep I'm counting down the days and hoping for some relief. The 6th is also my first born sons 18th birthday ! :ylol: I'm excited and a little sad for that. I'll keep you posted on the GI , thanks again .
 
I hope you find some,
AwWw! Happy birthday to your son, they grow so fast it's scary, my son will be 18 next November. They'll always be our babies though :ghug:
Hoping you find relief on the 6th. Makes the disease bearable if we have some respite from it.
Take it easy
 
Hi guys just a quick update - I saw my GI today and he upped my aza from 50mg daily to 100. I'm really hoping I don't get any of the nasty side effects I had when I first started on the aza. :hallo3: He says if I don't start feeling better I will have to go back on Entocort for at least 2 months so he wants to hold off on that for now. Oh yea he also ordered a blood test ( for the first time in 4 months) for liver funtion and white cell count I believe. He said he would call me today with the results - he hasn't . My next appointment is in 6 months ! I wish I only had to deal with my disease twice a year for 10 minutes each time ! Is this the norm ? I think that is to long of time , half a year, when my symptoms aren't under control. Welp that's all for now.
 
mrjohns2 said:
Assuming you have insurance, you should go back if the aza increase doesn't put you into remission.
Click to expand...

Hello mrjohns, When I started aza I was told it would take 3 months to get in my system and start working. Do you know with the dose increase if it will take another 3 months to start working or should it be a shorter time since the lower dose of aza is in my system already ?
 
Hi Cheri.
Cheers for the update, wish you had a more promising visit
Guess that's all i'm expecting from my visit, Like you I wish I only had to deal with it for 10 mins every 6 months too.
My appointment is end of the month.
I hope your meds work out for you. :ghug:
 
steph_irish said:
Hi Cheri.
Cheers for the update, wish you had a more promising visit
Guess that's all i'm expecting from my visit, Like you I wish I only had to deal with it for 10 mins every 6 months too.
My appointment is end of the month.
I hope your meds work out for you. :ghug:
Click to expand...

Hello Steph. If you have any questions for your new GI remember to write them down so you don't forget anything. I hope your appointment goes well. Keep me posted. :ghug:
 
Zeppy321 said:
Hello Steph. If you have any questions for your new GI remember to write them down so you don't forget anything. I hope your appointment goes well. Keep me posted. :ghug:
Click to expand...

Good tip, I'll do that otherwise I'll come away and have to wait another 6 months for questions to be answered, will keep you updated :ghug:
 
Just an update. I saw my GI today and am currently in another flare :( . He has now upped my dose of aza to 150mg a day. I was on prednisone for a month but will start entocort tomorrow. I'm also getting iron infusions weekly. My GI says I need to take the new dose of aza for 3 months to see if it works before I try Humira. I just want a medicine that works. I have been on pentesa and Remicade in the past and they didn't put me in remission. I feel like I've been sick for years. I hate the guessing game of try this med , give it this long to work - nothing is working ! Feeling fustrated :ymad:
 

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