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Newly diagnosed, new to forums

Hi all,

Here is an introduction to myself and my story. I am 30 years old, married, work as an astronomer. My father was diagnosed with a severe case of UC in his late 20s back in the early '80s, and due to life-threatening amounts of blood loss, had a total colectomy and permanent ileostomy. My paternal grandmother also had lifelong undiagnosed bowel troubles (she refused to ever see doctors about it).

About 1 year ago, in a routine physical, my bloodwork showed an abnormal liver function (elevated AlkPhos and ALT). As I had just returned from a trip to South Africa, infectious diseases were suspected, and I spent the next few months having more blood drawn than I realized was in my body, visiting Infectious Disease specialists, etc., all with no resolution. In the meantime, I developed a fistula in the same spot where I had an abscess 3 years earlier, and complained to my doctor of mild but fairly persistent problems with bloating, excess gas, and off-and-on stomach pains. Due to the wonderful slowness of the US health care system (especially getting new appointments with specialists) and a primary care Doctor fixated on Africa and infectious diseases, it was only a few weeks ago that I finally saw a GI. She looked at everything that had happened over the last year (abnormal liver function, bowel troubles, family history of IBD, fistula, and mild anemia) and immediately suspected IBD, so I had the wonderful experience of my first endoscopy and colonoscopy last week (that prep - ugh!!!).

The colonoscopy found mild to moderate ulcerations, and biopsies confirmed a diagnosis of Crohn's. I've now been referred to another doctor in her group who specializes in IBD, but of course have to wait almost 6 weeks for an appointment. In the meantime the first GI is still trying to get at the bottom of the abnormal liver results, with an MRI scheduled for tomorrow and a liver biopsy up next if the MRI doesn't show anything conclusive. She did mention that the Crohn's is mild and should be fairly easy to treat/manage, so that's good, and let's hope it stays that way.

Anyway, that's my story. I'd love to find out with the IBD specialist has to say about diet and medicine, but I have to wait awhile for that. In the meantime the search for a liver answer continues. I've tried to stop googling because I usually just manage to convince myself of the worst case scenarios (i.e., I was convinced I had colon cancer going into the colonoscopy, when in reality no signs of polyps were even found).

So, hello from this newbie.
 
Welcome to the forum Mike. You have been on quite the journey to a dx! I'm glad you were finally able to get to the bottom of the GI problems but six weeks is a long time to wait for the follow-up and treatment with an IBD specialist. I hope you get along well until then.

I'm sure more members will be along with their welcomes and experiences. I do hope the choice of treatment you and the specialist decide on brings you into remission quickly!
 
Mike,

I'd like to welcome you to the forum too.
It is a little overwhelming trying to read about everything..
You will find good support here and a lot of great information.

wishing you the best
 

afidz

Super Moderator
Welcome to the forum!
Hopefully they get to the bottom of your liver problems soon, I can only imagine what your going through waiting to find out.
Did the doctor that did your scopes prescribe you anything while your waiting on your new doctor?
Its good that the GI gave you a good outlook, hopefully you can get it under control quickly. Do you know where your disease is located? Depending on where your disease is located is one of the determining factors of your treatment path.
The main thing about Crohn's is that it is so different for everyone, we can all handle or not handle different foods, so unfortunately, its kind of a trial and error to see what things to avoid. It can be beneficial to see a nutritionist to kind of give you an idea of what to avoid and give you ways to replace key nutrients that you may miss out on.
Good luck with your MRI and welcome again!!
 
Thanks for all the welcomes and well-wishes!

Welcome to the forum!
Hopefully they get to the bottom of your liver problems soon, I can only imagine what your going through waiting to find out.
Did the doctor that did your scopes prescribe you anything while your waiting on your new doctor?
Its good that the GI gave you a good outlook, hopefully you can get it under control quickly. Do you know where your disease is located? Depending on where your disease is located is one of the determining factors of your treatment path.
The main thing about Crohn's is that it is so different for everyone, we can all handle or not handle different foods, so unfortunately, its kind of a trial and error to see what things to avoid. It can be beneficial to see a nutritionist to kind of give you an idea of what to avoid and give you ways to replace key nutrients that you may miss out on.
Good luck with your MRI and welcome again!!
The doctor that did the scopes didn't prescribe me anything - she preferred to have a specialist discuss options with me given that the Crohn's was, in her words, "relatively mild." It's a bit frustrating I have to wait so long to see an IBD specialist, but I'll be moving to another state later this year, so I'm not too concerned with whether or not there are faster, more responsive doctors in my area at the moment.

As for location, the doctor that did the scopes didn't get too specific, but from the paperwork they gave me summarizing the scopes, I have:

- mild inflammation in the 2nd part of the duodenum
- more severe inflammation w/shallow ulcerations in the duodenal bulb
- discrete shallow ulcerations in the terminal ileum, sigmoid colon, and rectum
- no polyps or deep ulcerations
 
Mike,

I am sure after reading your own results, you can see it is not mild. You should see someone soon. Your family history and the fact that you have already had an abscess should have given your doctor a big red flag. i do not want to scare you but you should get back in as soon as possible.

Keep doing research on this site. Ask questions.
Each person is different as mentioned before, but i would tend to look at family members a bit and see what medications helped them the most.
You have to stop the Crohns quickly.
The wiki section on this site has valuable information, and many members who can help with their own experiences.

Since you are already in a flare they might want to start you on Predinsone, Entocort En or another steroid. Our daughter had to be put on 2, 6 week doses of Prednisone to bring down the inflammation. There are side effects to Prednisone, but it is a treatment prescribed for short term. Often antibiotics are started, and a mild anti inflammatory like Asacol.

I am sure you already know not to take anything like ibuprofen, Aleve, or aspirin.

You might want to start on an all liquid diet to give your intestines a rest, such as Ensure. Our GI said, you could live on 4-5 of those a day. Or at least back off of high fiber foods, and no seeds of course.

Let us know if you are able to get into your doctors sooner, or a new one.
Best to you
 
I agree! This does not seem mild, and with your family history I really think you need to be seen quicker.

Goodluck
 
I'm certainly not in any sort of denial and claiming to have a "mild" case when in fact I don't. All I'm doing at this stage is parroting back the words of the doctor that did the scopes. If a specialist ends up disagreeing, which may very well be the case, then it is what it is. And I don't disagree that I really need to see an IBD specialist to discuss diet and medication, but I don't have many options except to wait until their open appointment. I certainly don't have any way to start things like prednisone before seeing this doctor, because my GP is not going to prescribe anything without me seeing this specialist first. So for now I'm really just stuck waiting to get an accurate, detailed diagnosis and advice on treatment.
 
Hi Mike,
Welcome to the forum. I hope that we can be of help to you. I am wondering why you have to wait so long to see a GI doctor? Depending on where you live there may be many wonderful doctors to see...If this one is overbooked I might be worth finding another. Ask you GP for more referrals...Or go to the CCFA website and see if there are specialists listed there in your area. It is very frustrating to wait for an appointment. Six weeks is a long time.

I hope you are able to get help soon. Keep us posted.
-Lisa
 
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