Stressing

[Donk4263]

Read the forum in the past...Join Yesterday...Thought I would post today.

Well, here is my story. I was officially diagnosed in 2007 but I believe I have had stomach issues for much longer. In 2008, I had surgery where 2-1/2 feet of my intestines were identified as diseased and resected. The surgery did provide me with initial relief but I became symptomatic again in 2009/2010 and I was hospitalized a few times. Turns out that I was also having Gall Bladder issues so I had it removed in 2010. Since then, I have been periodically symptomatic and on several different meds including Remicade, Prednisone, Lialda, Entocort, WelChol, etc.
In September 2011, my symptoms and frequency increased to the point where my doctor felt it was time to update my Upper GI with Small Bowl Exam and Colonoscopy. Past Capsule Endoscopy confirmed ulcers throughout the small bowel while these current tests confirmed only an ulcer at the terminal Ileum. Since then, I have really tried watch my diet and monitor my medications. Today, my only medication is Remicade infusions every 6 weeks, Tylenol for pain and Prozac for depression. Early on I was feeling pretty good but during the last few months, I have become more symptomatic where my abdominal pains seem to be radiating out from lower right side. This past week has probably been the worst since 2007 when I had a bout with diarrhea that can only describe as the night of a 1,000 waterfalls. I ended up missing working the next day as I was doubled over in pain. Bottom line, I am becoming very frustrated with the daily struggles of this disease along what seems to be a lack of answers about options for it. Finally, I am beginning to wonder if the Remicade infusions have ever really helped me at all.
I have a good education, a good career which I have been at for 25+ years but it can be stressful at times. As you can imagine, I want to hold on to this job (mainly because of the excellent insurance) but lately I feel that my boss’ have not been very understanding and I feel I may be in jeopardy of losing my employment. If all of this is not enough, I have a former wife who is constantly stressing upon my family which in turn stresses me out.
I have an appointment with my doctor in a month and I want to discuss the possibilities of switching to Humria along with way to reduce stress. Basically, I am tired and I want some normalcy back in my life.
Help…Does this sound familiar to anyone out there?

Any advice or insight would be greatly appreciated

 

[Rkpanter]

As long as you have insurance I would try Humira. I think remicade has run its course. I went through the same thing. Keep your boss assured you are doing your best to make your health not an issue....I was fired a few times but it is best to be honest! God will provide, keep him close....I will pray you get better and stay healthy. Bathrooms suck and become a lonely place.....no one in your job will understand, but your Crohns friends do. Lol Rosie.

 

[Donk4263]

Thanks for the reply.

I am very honest with my boss but the commute is just becoming more and more difficult.

Any experience with disability?

 

[Rkpanter]

Yes! in Idaho I applied one and half years ago. Without the help of a lawyer, and with 3 showings, I was granted disability. Only because I was already 61 years of age and already close to retirement did I think I was rewarded with SS. The judge was not open to my case at first, but then I told him that even if I were not granted this, please listen to other cases of Crohns and feel their pains and frustrations in the job market! Now on Medicare, I have had to drop Humira as this drug is not covered or any biologic, so there is always sacrifices one must make to get the needs one wants. :cool2: lol rosie

 

[David]

Hi Donk and welcome!

Wow, that's a lot of intestines to have removed. Did they remove parts of your terminal ileum and cecum? If so, have you been getting your vitamin B12 levels tested? How about your vitamin D as that is also a common deficiency.

If I was in your position I might look into Humira as well. However, I'd also definitely research enteral nutrition and low dose naltrexone. I'd hit the Crohn's from all angles. I'm a fan of the shotgun approach.

We also have a wiki entry on social security disability which might be of help to you.

We're here for you.

 

[Angrybird]

I think David has already covered things thus far so I will just say 'hi' and welcome to the forum, there is a lot of helpful info and support here so I am glad you have decided to join.

AB
xx

 

[Donk4263]

David,

Thank you for getting back with me. I am not sure exactly what was done but here is what the report read.
"The bowl was run then from the ligament Teritz to the ileocecal valve. There was no evidence of jejunal or proximal ileal pathology. However, when we reached the terminal ileum, we identified a long segment of Crohn's disease with what appeared to be classic transmural thickening of the bowel with stricture formation in a long segmentfashion in continuity. No evidence of skip disease. The mesentery was obviously foreshortened with what appeared to be fat creeping along the mesentric portion of the small bowel. When we identified the segment, we once again identified disease in continuity; perhaps 2-1/2 feet segment of small bowel was identified. Proximal and distal to this , the intestine appeared and palpated normal. This included the distal segment, perhaps 10-15 cm of the terminal ileum, which appeared normal. The colon appeared and palpated normal. This was done from the cecum to the rectosigmoid junction. As such, we entertained a resective therapy as this was essentially continuous long segment of norrowing and stricture formation."

I have not been receiving vitamin B12 or D testing but I do intend to discuss this with my doctor.

Thank you for the directing me to other locations here and I will discuss all of these with my doctor.

Thanks again,
Donk

 

[David]

Hi Donk,

Based upon that report, I don't think they removed your ileocecal valve or cecum. That's a good thing. However, 2.5 feet of terminal ileum is a LOT and you are very likely deficient in what I mentioned which could be causing a whole host of your symptoms. When you get them checked, get the actual numbers and let us know what they are if you're comfortable doing so. We can provide insight based upon that.

Regarding the low dose naltrexone, there's a very good chance your doctor has never even heard of it. If it's of interest to you, do some serious homework first and print out studies so you can go in well prepared.

 

[Donk4263]

David,

Thank you again for your insight. I look forward finding out more.

 

[Donk4263]

Hi David,

A few months back I posted my story and you provided me with some really great feedback. Well, I finally had some blood tests and I have the results but I really cannot make heads or tails out of it.

My Doc says everything is fine but I just thought I would try and touch base with you.

If you can provide any insight on how to read these results, I would be greatful.

Thanks again,

 

[Ckt]

I wanted to say hi and welcome to the forum!im fairly new here too but I have already received so much support and valuable info!my disease is mostly in the ileum too and I have had record lows of vitamin d and b 12 so I supplement them. I take b12 injections once a month,vitamin d via a capsule and iron infusions every 3-4 months.
Your description of the weekend from hell..a thousand waterfalls! is perfect!just when ya think there cannot possibly be more poop in there,right?! There are stretches when I feel discouraged for sure. I always saw myself as a very active,athletic,world traveling kinda person until I was diagnosed with crohns..now I'm just wanting to get back to work after being off for ten years!
Luckily,I have great health insurance thru the federal government and disability retirement thru them as well. So although things are tight,I'm able to get everything I need.
Hang in there!it has helped me no end in knowing I'm not alone in struggling with IBD..my friends and family are great and very supportive,but they cannot know everything this illness entails. I don't want to be defined by my illness but I cannot be in denial that it has shifted my life in some major ways either..
Keep researching and asking questions!i feel we alone are our best advocates!!

 

[Donk4263]

Thanks Ckt...Do you have any experience with blood tests?

For instance, I am reading that a range for a white blood cell count is between 4.0-11.0 and my count came in at 5.6.

Also, I am reading that a range for a red blood cell count is between 4.34-5.6 and my count came in at 4.6.

Would these be considered low?

Also, this blood test was taken just before my last Remicade infusion. Would this have any influence on these values?

 

[Ckt]

I do have some experience as I'm a nurse.. Your whitE blood cell count is normal..your red blood cell count is low range normal. Other numbers which would be helpful for you to know would be the hematocrit and hemoglobin as well as your ferritin level(tells the level of iron in your blood) also if they did a 'sed' rate..it would be abbreviated as 'ESR' on the lab results. This is the sedimentation rate that points to chronic inflammation. Did they do any inflammatory markers like a c reactive protein level?
Having said all this, my inflammatory markers has rarely been elevated even with known inflammation. I don't have a clue why that is but it makes things a bit more cloudy!most times my gi will treat me symptomatically regardless of my labs because I have been with her for 8 years and she's seen me through some of the roughest times of my flares..hope that helps and if you have any more questions ask away!i can't diagnose or anything..just share my personal experience!

 

[David]

Hi Donk,

Did you get that vitamin B12 level tested?

 

[Donk4263]

Hi Ckt,

Thank you so much for your insight...My thoughts were pretty much the same that although in the normal range perhaps a bit on the lower side of normal. I guess the good news is that both my Hemoglobin and hematocit appear to be well within normal ranges at 15.1 and 44.1 respectively.

Unfortunately, I do not see any of the other tests you described. I will try to discuss some of these other tests with my doctor.

Thanks again for this information.

 

[Donk4263]

Hi David,

Yes, I did have my vitamin B12 tested but I am not sure I know how to read the results. The results at the top of the report read, Abnormal and the component results read that my vitamin B12 value is >2000 (H) with a range of 211-946 pg/mL.

As a result, I am wondering if having a B12 injection about 2 hours before my blood being drawn would effect these results. If you can provide any insight, it would really help.

Thanks again,

 

[David]

Heheh, yeah, that would skew the results.

 

[Donk4263]

Yea, I thought so. Oh well...Thanks for you help.

 

[David]

Have you been getting B12 shots regularly or was that your first one?

 

[Donk4263]

That was the first one in probably a year and half.

 

[David]

Ah. Bummer they didn't test your levels before giving it to you. I think it would have been valuable to know.