Diagnosed with Crohn's

[trebor-HI]

Hi,
I'm 55 years old. I went to a GI doctor because I was overdue for my first colonoscopy. While there, I explained to the Dr. that I experience bouts of vomiting about 2-4 times per year. This has been going on for about 10 years. The doc said he would do both a colonoscopy and an EGD. He also had the local lab draw blood.

The blood work revealed that I had iron deficiency anemia. The colonoscopy & EGD report stated the following: "...moderate inflammation and shallow ulcerations at the ileo-cecal valve. The ileo-cecal valve appeared to be chronically scarred and it was difficult to intubate the terminal ileum suggesting stenosis. Biopsies were taken with a cold forceps for histology". The rest of the colon and the EGD were reported as normal. It does not appear that any portions of the small intestine were examined.

Five weeks after the colonoscopy & EGD I saw the Dr. again for a follow-up. He told me I had Crohn’s, prescribed 4.8 grams of Asacol EC and 0.975 grams of Ferrous Sulfate per day. He told me that he'd see me again in 3 months.
The Dr. did not volunteer much information but did make the following statements: Something may be triggering the ileo-cecal valve to shut and cause my periodic bouts of vomiting; The biopsy was positive for inflammation; That Crohn’s can’t be cured and that I would be on medication for life.

After some reading I understand more about Crohn's, IBD and UC but I don't know much about my own case. I don't seem to have hardly any of the symptoms that I've read about. I haven’t started taking the Asacol as I’m reluctant to start a regime of taking 4.8 grams a day of any medication. I’ve enjoyed good health all my life. So I find myself shocked by all of this and scared that conditions may worsen and result in surgery some day. I may be in a state of denial!

I got the blood test results from the lab and have googled most of the terms used in the reports.

Should I ask the doctor if I can have a copy of the biopsy report? Should I also ask for a copy of the EGD and colonoscopy? I assume they have a CD or DVD of the procedure. I don’t want to insult the Doctor but I would like to read/understand more about my case.

I thought the Dr. told me that the colonoscopy did not reveal any bleeding so I’m not sure why I’m anemic. I’m never seen any blood in my stool.

Well, that’s my story. I’d appreciate any questions or discussion that may arise.

 

[Dunbar]

Hello and welcome to the forum. It can be overwhelming at first, especially when we try to understand so much in such a short time. Read some success stories too, that will lessen your anxiety. Surgery is not a for sure for everyone, you may very well be able to control your crohns with diet, meds and/or a combination if you so choose. Ask your Dr. for whatever copies you want, he may or may not give them to you. Explain that you would like these in order to understand more, it may encourage him to help you understand. If not, ask about putting it all in laymans terms for you, you have to know what's going on in order to make informed decisions. I'll keep my fingers crossed that your Dr. is one of the help the patient to help themselves kind. As for the anemia, you will not necessarily see blood in your stool (I never have) it might only be found by testing. The inflammation will cause all sorts of interesting things to occur in your body and malabsorption of vitamins and minerals is one of them. A big one. Have B12, vitamin D, sodium and potassium tested as well if you haven't already. You can also 'search' for specific info in the site to help keep yourself focused on specifics, I know that getting lost in all the stories is waayyy to easy here. I am thinking of setting a timer for myself. lol Good luck, good health and keep us up to date.

 

[David]

Hi there and welcome to the community. I'm really glad you joined Just be glad that you're on Oahu. If you were on the Big Island (I lived hilo side awhile) your colonoscopy would have been a garden hose with and telescope performed by a guy named Chakra down at Kehena beach while drums played in the background. Can you tell I'm a little bitter about some of the medical care I got there?

Sorry, moving along!

First off, it's a great idea to get copies of all your results. You're going to want to want to keep track of all this stuff. And you're going to want to learn everything you can about Crohn's Disease so you can advocate for yourself. We're here to help with that process. Various things:

1. It's important to determine if the inflammation in your terminal ileum and possibly higher up is indeed leading to stricturing. And if it is stricturing, whether that is due to inflammation or scar tissue. And just how narrow it is. This will require further testing. This will also tell you a lot about what sort of treatment would be best and likely in the future.

2. I agree 100% with Dunbar about the need for vitamin and mineral levels to be tested. The big ones I mention to people with disease of the ileum is vitamin D, vitamin B12, and folate. Get these tested and get the actual numbers.

3. There are a variety of causes of anemia in Crohn's Disease. It's very common. Keep a journal of how you feel as you take the iron as it can be hard on some people and I don't want you to end up on a PPI or H2 blocker when you could just try a different form of iron.

We're here for you. I know this is overwhelming but things have changed. We're here to help you in that transition and beyond.

All my best to you.

 

[trebor-HI]

Thanks for the replies. You folks mentioned the following blood parameters. Had them all measured except vitamin D. Apparently these are all within normal ranges.

sodium: 138 mmol/L
Potassium: 4.8 mmol/L
Chloride: 29 mmol/L
B12: 353 pg/mL
folate 18.1 ng/mL
Vitamin D: not measured

The following were out of range:
RBC: 3.95 10(12)/L
Hemoglobin: 11.4 g/dL
Hematocrit: 33.9%
RDW: 15.4%
Ferritin: 3 ng/mL
Iron: 17 uG/dL
% Saturation: 5%

It's not clear to me that the terminal ileum was examined during the colinoscopy as the report made no mention other than that the ileo-cecal was difficult to intubate. The report included little postage stamp size photographs of various regions of the large colon and of the stomach but none of the ileum or any other part of the small intestine.

 

[David]

What was your MCV and what was the range for it?

 

[trebor-HI]

MCV: 85.9 fL
apparently the acceptable range is 80-100 fL

 

[David]

Thank you So you're a bit anemic as you already knew and your B12 is supposedly normal. However, this paper showcases that over 50% of people with B12 levels between 200 and 400 pg/ml are actually deficient (serum B12 isn't a great test). Considering your diseased terminal ileum which is where B12 is absorbed, it's quite possible you are deficient and it might be contributing to your anemia.

Any numbness or problems with your hands, fingers, or feet/toes or fatigue?

Anyway, you may want to take that paper with you next visit and see if your doctor wants to test your methylmalonic acid and homocysteine levels or supplement you just to be safe.

 

[trebor-HI]

David,

I'm a bit confused. Do colonoscopies usually pass through the ileo-cecal valve and examine the terminal ileum? I'm under the impression that my inflamation was identified in the cecum and/or the cecum side of the ileo-cecal valve. I don't know if the terminal ileum was even examined.

Thanks

 

[David]

Yes, during a colonoscopy they are often able to access the terminal ileum which is the last part of the ileum just before the cecum and is separated by the ileocecal valve. They had trouble accessing yours because it was (probably, since they say "suggesting stenosis") so inflamed and/or scarred.

 

[trebor-HI]

I was hospitalized for four days with a small bowel obstruction. Got sick Tuesday night, was sick and in the hospital Wed & Thu, still in the hospital fri & sat but feeling much better. I was released from the hospital Sat night after holding down a solid/bland meal. Thing is, I haven't moved my bowels now in 10 days (since the Tuesday morning I got sick). My GI doc is on vacation. I spoke with his PA. She believes I'm suffering from mechanical blockage of the ileum due to scarring...that surgery is the only option remaining. What doesn't jive for me is that my bowels were moving regularly up to the morning I got sick. Now, I haven't moved my bowels in 10 days yet I feel okay otherwise.

They have me on flaygl, cipro and prednisone.

 

[DJW]

Hi. I've had lots of blockages, most mechanical. It bows my mind how fast they can come on.