Crohn's Disease Forum » Support Forum » Vent Away » I am so frustrated


10-17-2012, 01:32 AM   #1
motheroftwins
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I am so frustrated

Hello everyone, Went to my GI doctor today @ 10am and he politely told me he didn't know how to treat my condition and made arrangements for me to see a new GI doctor. The appointment was made immediately with the new GI doctor @ 2:15 (same day). I went to my new appointment met the new doctor he already did a study on the slides and pathology report. He wanted me to start me on Humira right away but the problem is I can't afford it and the only way I am even able to afford Entocort because my old GI dr. gave me a bunch of samples and the new GI dr. is going to as well. Thank goodness. The thing is my treatment is based on what I can afford instead of what I need. The new GI doc. did a sigmoidoscopy in office and my inflammation has gotten much worse even though I have been on Prednisone for a month. I am getting frustrated and scared. I am anemic and suffering from fatigue and my stomach just hurts like hell. I have lost more weight 25 pounds in 2 weeks. They are deciding if I need a picc line in me because I am dehydrated, I will know tomorrow morning. They would have started one right away at the At home nursing station but they are trying to get me on a payment plan some how. They already started an IV I was at the hospital for a couple of hours. I don't know how I am going to be able to afford that trip. They said if I get any worse to go to the ER but that is even more expensive. Thanks for reading I needed to vent. I start the Pillcam on Friday
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Diagnosed Sept 18, 2012
Prednisone 40mg started 9/18/12 StopTapering 10/16/12, 20mg. Back up to 40mg 10/26/12
Humira, Sulfasalazin 4500mg
Cholestyramine
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pyloric stenosis and appendix
10-17-2012, 04:23 PM   #2
Cat-a-Tonic
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Aw Suzie, big hugs to you. As for not being able to afford medications, you might try contacting the manufacturer (your pharmacist might also be able to help) and see if they can offer you any type of discount program or anything like that. Personally I take Nexium and the manufacturer offered a discount card to me so I only pay $18 per month for it and it's normally much more expensive. I haven't been on Humira but you might try googling the manufacturer or calling your pharmacist and seeing what options you'd have for discounts or even freebies there. I was on Entocort a couple years ago and that one is expensive too - I don't recall if there were any discounts for that one but it's worth checking into anyway. And as for not being able to afford hospital visits/ER trips, check with the hospital - they should have some sort of financial aid program. I got financial aid through my hospital a few years back and they removed all my medical debt at the time - I went from over $6,000 in doctor bills to zero! Good luck, I hope you can figure out a treatment plan that works well for you and doesn't break the bank!

I'm glad that you didn't have to wait long to see the new doctor! Good luck with the pill cam too! I know it's frustrating and frightening and exhausting. We're here for you so hopefully that makes it a little less awful. Big hugs and hang in there, hopefully relief and better days are on the way very soon!
10-17-2012, 05:34 PM   #3
CrohnsHobo
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Have you checked the Humira patient assitance program? They paid for the large portion of it when I took it.

Johnson & Johnson also has a patient assistance program. Hate seeing someone have to be ill because of the insane cost of medicine.
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Past Failed Treatments:
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10-20-2012, 08:19 PM   #4
motheroftwins
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Hi Cat-a-Tonic and CrohnsHobo, update: I have been in the hospital since 10/17 had a couple of blood transfusions and an emergency colonoscopy, enoscopy and pill cam. I defiantly have Crohn's in my terminal ileum and small bowels. Then I have Collagenous Colitis in my Colon that is all over my large intestines called pan-colonic. I started Humira a couple of day ago and my next shot is next week. I have no UC, so that is the good news. I am super tired they have me on a couple of pain killers that are making me sleepy through the IV. I am hoping to be able to go home soon. This whole roller coaster has been very traumatic. I just want to get well so I can get my life back.
10-20-2012, 11:16 PM   #5
Dogluv
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Hi,
I'm so sorry to hear your going through so much! I wanted to tell you about a drug called LDN that I'm on. I've been on it for about 5 months now, and I'm currently in remission because of it. It's is a pretty amazing drug, the only side effects I've seen are vived dreams, and temporary constipation. it costs me around 20.00 for a months supply, so it's also really affordable. I know it doesn't work for everyone, but it has worked for me, and a few more people on this forum. The only trouble is finding a doctor to prescribe it. Because it hasn't been approved for the treatment of crohns some doctors are skeptical to prescribe it, it all really depends on if your doctors willing to let you try it. I just thought I'd mention it, to give you something to think about. If you have any more questions about it feel free to ask, and you can also look at the LDN sub forum. I hope you start feeling better soon!

Best of luck, Larissa
10-22-2012, 04:47 PM   #6
motheroftwins
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Hi Dogluv, thank you for the information about LDN. I will mention it to my dr. tomorrow when I see him. I am still in the hospital... grrr. I have a fistula, icky, yuck and all that stuff. I have never, ever dealt with this before but I have had fissures. They have me on a antibiotic called Flagyl and put in seton last night. I am not having fun. Thank you for your support I really need it!!
10-22-2012, 08:50 PM   #7
David
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I'm glad you got referred to a new GI and I'm glad you have a more firm diagnosis now. That's progress

You can get Humira for $5.00, click here.
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10-26-2012, 06:47 PM   #8
motheroftwins
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I just got back home from the hospital and it is nice to be home.
11-02-2012, 02:34 PM   #9
motheroftwins
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Hello, I wrote this down in another part of the forum but didn't get a response, so I thought maybe I would try here:

My latest blood work showed and this was my concern... My Neutrophil was 89.7 which is high normal range is (33.0-75.0) and my Lymphocyte 8.2 which is low, normal is (20.0- 53.0) I am already anemic and my wbc is 20 which is high, normal is (4.1-11.0). I probably have nothing to worry about but if anyone could give me some insights on the blood work or advice or educate me would be awesome.
Thanks David for the information on Humira... By the way the shots hurt
11-02-2012, 05:39 PM   #10
David
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While neutrophils and lymphocytes are both types of white blood cells, I'm not yet educated enough to know what the combination of high neutrophils and low lymphocytes might mean, sorry. Maybe Aussie or Dustykat or someone else might know.

*hugs*
11-02-2012, 06:28 PM   #11
DustyKat
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Neutrophils:

As David has said, Neutrophils are one type of white blood cell, there are 5, and they are the most abundant of the white blood cells. They will respond quickly and in large numbers if you have infection and/or inflammation present.

Looking at the white cell count overall (WBC) it will be increased if the Neutrophils are increased. That is why they break the count down into specific cell types as it allows for a better idea of what may be occurring.

Now to muddy the waters further, , certain mediations can increase your WBC and one of those is steroids.

Lymphocytes:

Humira can and often does reduce your lymphocyte count as this is one of the actions by which they control your disease.

What also may play into the reduction of lymphocytes is that when one type of white blood cell is elevated it can reduce the amount of other types of white cells.

So there may well be a combination of factors that is contributing to your white cell pattern...inflammation/infection and medication.

The balance you will have to find is for your lymphocyte count to perhaps be at the lower end of normal or at reasonable sub normal levels and to not acquire any serious infections, easier said than done I know!, as your immune system is compromised whilst you are on Humira. If at any time you feel that you may have contracted an infection let your GI know.

Have you ever been on the antibiotic Flagyl? Given that inflammation can often mean that infection is present it may be worthwhile taking a course to see if it brings things back into line, plus it also has anti inflammatory properties. Just a thought.

I hope that all makes sense!

Dusty. xxx
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11-03-2012, 01:58 PM   #12
motheroftwins
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Neutrophils:

As David has said, Neutrophils are one type of white blood cell, there are 5, and they are the most abundant of the white blood cells. They will respond quickly and in large numbers if you have infection and/or inflammation present.

Looking at the white cell count overall (WBC) it will be increased if the Neutrophils are increased. That is why they break the count down into specific cell types as it allows for a better idea of what may be occurring.

Now to muddy the waters further, , certain mediations can increase your WBC and one of those is steroids.

Lymphocytes:

Humira can and often does reduce your lymphocyte count as this is one of the actions by which they control your disease.

What also may play into the reduction of lymphocytes is that when one type of white blood cell is elevated it can reduce the amount of other types of white cells.

So there may well be a combination of factors that is contributing to your white cell pattern...inflammation/infection and medication.

The balance you will have to find is for your lymphocyte count to perhaps be at the lower end of normal or at reasonable sub normal levels and to not acquire any serious infections, easier said than done I know!, as your immune system is compromised whilst you are on Humira. If at any time you feel that you may have contracted an infection let your GI know.

Have you ever been on the antibiotic Flagyl? Given that inflammation can often mean that infection is present it may be worthwhile taking a course to see if it brings things back into line, plus it also has anti inflammatory properties. Just a thought.

I hope that all makes sense!

Dusty. xxx
Thank you David and Dusty, yes I am still taking Flagyl and thank you for the clear explanation and you made perfect sense!! This really helps me a lot.
11-06-2012, 01:07 AM   #13
tots
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DustyKat or David-

That type of white blood cell count shows inflamation in that they see old and new white blood cells that show inflamation= not an infection per say. Right?

I have a left over "hangover" from my infusion today so sorry in advance if thats what
you said above and I just didnt get it! ( alot of Benadryl and Zyrtec)


Thank you,

Lauren
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Currently on Humira 80 painful milligrams every other week.


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11-06-2012, 02:41 AM   #14
DustyKat
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Hey tots,

An increase level of Neutrophils can be caused by inflammation and/or infection but is more often associated with acute infection.

An increase or decrease in one of the 5 white cells can point to specific diseases or process but it may not always be that clear cut. With IBD, when you have inflammation you quite often have infection as well, just by the very nature of what passes through gut and how that interacts with a breach in the mucosa. An increase in monocytes can point to a chronic inflammatory disease as opposed to infection.

For example: Matt had two admissions to hospital for exacerbation of his Crohn's and abscess. I do not have access to the blood results on his second admission except to say his white cell was 35.
On his first admission to hospital though his white cell was 23 and his Neutrophils were 21.5. They both fell over the ensuing as he was treated with antibiotics. His monocytes and other white cells were normal.
It was only when his inflammation went from acute to chronic and he was free of infection due to long term antibiotic therapy that his overall white cell count stabilised. It was at this point that his monocyte count would occasionally sneak over the normal range.

Hope that helps.

Dusty. xxx
12-07-2012, 05:55 PM   #15
motheroftwins
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Waiting for stool sample results.
03-25-2019, 11:18 PM   #16
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Neutrophils:

As David has said, Neutrophils are one type of white blood cell, there are 5, and they are the most abundant of the white blood cells. They will respond quickly and in large numbers if you have infection and/or inflammation present.

Looking at the white cell count overall (WBC) it will be increased if the Neutrophils are increased. That is why they break the count down into specific cell types as it allows for a better idea of what may be occurring.

Now to muddy the waters further, , certain mediations can increase your WBC and one of those is steroids.

Lymphocytes:

Humira can and often does reduce your lymphocyte count as this is one of the actions by which they control your disease.

What also may play into the reduction of lymphocytes is that when one type of white blood cell is elevated it can reduce the amount of other types of white cells.

So there may well be a combination of factors that is contributing to your white cell pattern...inflammation/infection and medication.

The balance you will have to find is for your lymphocyte count to perhaps be at the lower end of normal or at reasonable sub normal levels and to not acquire any serious infections, easier said than done I know!, as your immune system is compromised whilst you are on Humira. If at any time you feel that you may have contracted an infection let your GI know.

Have you ever been on the antibiotic Flagyl? Given that inflammation can often mean that infection is present it may be worthwhile taking a course to see if it brings things back into line, plus it also has anti inflammatory properties. Just a thought.

I hope that all makes sense!

Dusty. xxx
Hi,

I just got my blood test results in the mail and my Neutrophils are 83.7 (high) and my Lymphocytes are 9.7 (low).

My major Crohn's symptoms are better than they were a month ago, but I have been on Prednisone for nearly two months now.

Do you have a link for how Prednisone can elevate and lower Neutrophils and Lymphocytes, respectively?

Thank you.
03-27-2019, 09:20 AM   #17
Tuff
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The previous post is from 2012, I doubt they are still around.
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