Help with cap endoscopy results

[mjr]

Had a cap endoscopy done and the results are summarized as follows:
195 min Generalized edema
198 min small ulceration with deformity
220 min aphthous ulcer with non surgical stricture , marked edema, erythema (45 min to pass)
289 min black base aphthous ulcer, surgical stitch, stenosis, small inflammatory polyp (over 45 min to pass)
340 min 2 subtle areas stenosis very distal ileum before large bowel
total time 345 min to large bowel, no large bowel issues noted

Prior to test my specialist was adament that my crohns was in full remission and I was told to adjust my diet. I had tried lots of things and nothing seems to help. Since this test has been completed, I have had my first dosage of remicade last week.
I've been sick off and on for several years and just diagnosed 2 years ago after a bowel obstruction. The obstruction was removed, but I did not get any better. I am nauseous on a daily basis, with ab pain, migraines, and completely exhausted. I have not been able to work for over a year and my disability insurance declined my claim and my employer of 10 years terminated my employment on the day I had this test done.
Can anyone give me some hope that remicade will help over time or am I simply shit out of luck.
I suspect, because my disease was never diagnosed until recently, that some of the damage may be permanent.
Help, I really need some hope that I may once again have some sort of quality of life as I am currently pretty much bed and bath ridden and very depressed, even though I am on antidepressent paxil.
Thanks for your help.

 

[SarahBear]

Hi, mjr!

I'm sorry you're feeling unwell.

I have a few questions for you. How long have you been taking Remicade? Have you tried any other medications? How long did you show symptoms before being diagnosed?

 

[mjr]

Hi SarahBear;
Thank you so much for your reply.
I suppose could say always sick, at birth I could not tolerate formula and required a special hypoallergenic formula. Just started remicade last week, Jan 7, 2013.
I suspect I likely had flares all my life but just kept going. I do not like hospitals as I was in the hospital a lot as a child for asthma/allergies.
I started having crippling ab issues about 12 years ago and doctors did not know what was causing the issue. They gave me a prescription for asacol which I took for several months with no results. Then went to an allergist and was diagnosed with a bunch of food allergies and was prescribed sodium cromoglycate before meals. That worked ok for several years, but about 4 years ago I started to get very sick again.
My last surgeon suggested that maybe I should try exercise or yoga or maybe I just don't have a reason to get up and going in the morning. When she operated she did not see any active crohn's therefore I must be in remission, even though the small bowel follow through showed 2 distinct strictures.
I was diagnosed Oct 2010 (at 45 years old) by the lab results from the bowel obstruction they removed. Whatever is going on is only internal not external of my small bowel.
I am so very tired.
Maggie

 

[SarahBear]

I'm sorry, mjr.

As for the Remicade, it sometimes takes a couple weeks to start working. You might want to check out the "Overview of Remicade" thread, and the Remicade subforum. Even if the Remicade does not work for you (but at this point, there's no reason to assume it won't), there are other medications you can try, so please don't lose hope.

You're no longer being considered to be in remission, and your Crohn's is only in your small intestine, am I correct? Sorry, I'm a little unfocused this morning!

Did they put you on any medication after the obstruction and your diagnosis?

 

[mjr]

Yup only in small bowel. Used to be constipated now back to running to the bathroom all the time with the runs. I also get overheated all the time and start sweating like crazy.
Here is a list of meds I am currently on:
Azathioprine (since April 2011)
remicade
hydromorphone (max 6 mg/day) doesn't seem to help much
Zofran
Advair
ventolin
esomeprazole
Botox
epi pen
One thing that is very bizarre, is that my CRP is always normal, even before my first surgery. The section of bowel they removed was strictured, with a few ulcers. My problem seems not to be the ulcers, but the strictures.
I've probably brought this all on myself by not going to the hospital when sick. I will only go to hospital when I am so bad I can't move.
I really miss life.
It upset me that I kept telling my specialist I was still sick and he was adament I was in remission. I'm pretty sure that is why my insurance declined my claim and work terminated me for not going to work.
Thank you so much for corresponding with me.

 

[SarahBear]

CRP doesn't seem to be 100% accurate - I've seen forum members mention their CRP being normal and yet being in a flare. Seems that the same thing may have happened to you.

I'm very sorry that it has gotten to this point for you, but I see no reason why you can't reclaim your life with proper treatment. Hopefully you'll stick around the forum and stress the importance of seeking treatment early on.

Now that it's clear you're not in remission, is there any way to appeal to the insurance company?

 

[mjr]

I have a lawyer on the case, letters have been sent. My job was with a major bank as a manager. Loss of my benefits really is hard, had to apply for financial assistance for the remicade co pay as my spouses medical plan only covers 80%. But to lose life insurance, dental, medical, etc is really bad.
I have researched other cases of unjust dismissals in Canada and the courts will always side with the person who is ill. I was terminated and haven't even been to work in a year. I've thought of going public, but won't do that. However, if it does go to court it will be public.
I have a great spouse, he has been so very supportive and takes awesome care of me.
I don't know if they ever would have caught it early as I only got the diagnosis after the lab analyzed the sample.
In searching, I did find one site that seems to state that remicade will reverse strictures over time, ie. 3-5 years.
I don't know if I will ever be able to work again, but it would be really nice to be well enough to have my grandchildren over once in a while overnight for a visit.
I haven't even been able to cut the hair in a year in a half, can't seem to be able to go to the appointment.
Question
What do you suspect may be causing my nausea. if I do not take zofran every morning I end up hugging the toilet.
I also find my bowels seem to retain gas. My stomach just swells right up and causes a lot of pain. Going into the tub seems to help ease the pain, but, I've never been a tub person and when I end up in the tub, I end up there for several hours (min 4 hours). I end up in the tub a minimum of 4x per week.
Are you able to work? or go to school, you look so young.
Mag

 

[SarahBear]

It sounds like you have a pretty solid case. I hope it goes smoothly for you!

Nausea is a common symptom of Crohn's. It's also fairly common with migraines, if I'm not mistaken. Gas and bloating is also fairly common. If you take a look around the forum, I'm sure you can find tips to help you deal with these things, or at the very least, someone who can relate!

I currently work part time and go to school full time.

 

[mjr]

Botox has really helped my migraines, would have been great if a side effect was to help my stomach problems.
Any thoughts of what may be potentially safe foods? I haven't been able to find safe foods. I have even tried the specific carb diet to no avail. I do know some items that are absolute taboo like dairy, calcium carb (many dairy replacements have this).
Flares are stated with a lot of crohns patients. I believe I use to have flares, but now am just constantly sick or very sick. I have been tracking my diet and symptoms for 11 months. It just seems like everything is an irritation.
Thanks,
Mag

 

[SarahBear]

Check this thread: http://www.crohnsforum.com/showthread.php?t=17707

It has a list of the most common trigger and safe foods among the forum members who have responded. In general, raw vegetables and fruits can be hard on the stomach. A lot of people also have problems with spicy foods, carbonated beverages, coffee, and dairy products. It varies a lot from person to person (for example, I have problems with vegetables and coffee but am usually fine with spicy foods and dairy and never have problems with carbonated drinks). I think that those of us with small intestinal involvement are more sensitive to foods than those without.

 

[mjr]

Thanks so much. I have a lot of problems trying to understand this stuff. I've never had any interest in bio, so any and all info in laymans terms is very much appreciated.
Have a great day,
Mag

 

[CrohnsChicago]

The severity of your condition (in addition to location) also plays a major factor in how food affects you. The digestive system of someone with IBD has to work harder in order to break down and pass foods.

I don't have small intestinal crohn's, I only have it in my colon. But because my condition is rated moderate to severe with ulcers and other things going on in my colon, it can be just as uncomfortable as someone who has crohn's in another part of their body.

Feel free to also check out this link which provides information on different types of diets and supplements people try to ease their crohn's symptoms:

http://www.crohnsforum.com/showthread.php?t=32036

Sarah gave you some really good resources. I highly recommend you check out the Remicade Forum link that she provided above. You will find it to be a great resource for you on here as you adjust to your treatment plan. It contains posts from others about Remicade who may be experiencing similar symptoms and side effects and concerns such as yourself..

Wishing you the best of luck!