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tokmom
05-28-2009, 01:18 PM
Does anyone here suffer from Crohns? Dh's cousin has been diagnosed in his mid twenties. His insurance only pays for so much and his uncle helps him with the rest of the medication bills.
What nobody seems to understand and nobody has asked, but this young man needs to go in every other month for some sort of transfusion? Does anyone know what this would be? It runs about 4000 dollars and the amount uncle pays is 800. He's on a fixed income and he's getting to the point he cant afford it. The young man hasn't asked or doesn't understand, it's hard to say. My guess is, if it was coming out of his own pocket he's sure be asking questions!

TIA!

Knitting_Guy
05-28-2009, 01:54 PM
As a life-long IBS sufferer I am quite familiar with Crohn's as the symptoms are nearly identical and one is often mistaken for the other.

As far as I know, transfusions aren't a normal course of treatment for Crohn's. It's normally treated with a combination of drugs and diet, and ultimately surgery to remove the affected section of intestine.

Here is the WebMD page regarding the treatment for Chrohn's. You'll note that transfusions aren't mentioned. That's something I have never heard of with regard to Crohn's.

Jan in CA
05-28-2009, 03:17 PM
Oops.. Mason forgot the link.
http://www.webmd.com/ibd-crohns-disease/crohns-disease/default.htm

Knitting_Guy
05-28-2009, 04:06 PM
Oops.. Mason forgot the link.
http://www.webmd.com/ibd-crohns-disease/crohns-disease/default.htm

Yeah I did, that's what happens when the phone rings while posting :rofl:

vaknitter
05-28-2009, 09:13 PM
YUP - I've got it. Diagnosed at 23, 5'11" tall and 99lbs.

When you say transfusions do you mean infusions? A blood transfusion for Crohn's is nothing I've ever heard of. However, IV drug infusions are pretty common. The popular one I wanted was Remicaid (there is another whose name escapes me)..maybe Enbral. They are actually rheumatoid arthritis drugs - big time anti-inflammatories. I went through my bad times before they came on the market so I took lots of different meds and spent almost 2 yrs on prednisone. I am not recommending my course of treatment as everyone is different. I stayed on the meds and did diet modification etc and now I am off all meds, using probiotics along with diet modification and do great. Granted, my bowel habits are not that of a "normal" person, but I work full time am married and will raise children without the side effects of drugs.

IMHO a great book for me was Eating Right for a Bad Gut.

Good website www.ccfa.org (http://www.ccfa.org), the gastroenterologist should be able to provide you with a free one yr membership to get their magazine and updates and drug trials and studies (free meds).

I am more than happy to PM you and give you as much info as you would like. I remember all to well what I went through getting diagnosed and then the 4 yrs I spent getting healthier.

tokmom
05-28-2009, 10:14 PM
Thanks for the links. I will pass them on.
As for transfusions, it's some sort of medication. He goes every other month.

tokmom
05-28-2009, 10:20 PM
I might take you up on the pm if I can find out more from dh's uncle. I'm trying to help him not go bankrupt!

auburnchick
05-29-2009, 10:45 AM
My husband was diagnosed with Crohn's when we were dating...he was 23.

For years, he took Prednisone when he had flare-ups, but being on this drug long-term is very bad for a body.

Remecaid was a miracle drug for him. When we lived in South Florida, our HMO paid the entire bill, so we didn't have a clue as to the cost.

Unfortunately, when we moved to north FL and our insurance changed, we didn't know we would have to pay 20%. What a shock! He'd had two treatments before the bills started rolling in, and it took us a year to pay them off.

We made the decision not to continue with the treatments because of the cost. We just couldn't run ourselves into the ground while still having a lot of other financial obligations.

He now takes Pentasa as a "maintenance" drug. It has not had any side affects and seems to keep the Crohn's in check. It's been years since my dh has had a flare-up that required hospitilization.

Oh, and one other thing. Surgery does not cure Crohn's. The disease will usually flare up in one area of the intestines. If you cut that section out, Crohn's will usually return in a different area. My dh has always refused surgery. He figures he'll just continue to suffer from the other stuff...always having to go to the bathroom, stomach aches...

My heart goes out to your dh's cousin. Crohn's is not a fun disease to live with.

:hug:

Knitting_Guy
05-29-2009, 07:01 PM
As for transfusions, it's some sort of medication. He goes every other month.
Ah, that's an infusion not a transfusion. A transfusion is when they replace your blood with new blood, or add fresh blood to yours.

Knitting_Guy
05-29-2009, 07:02 PM
Surgery does not cure Crohn's. The disease will usually flare up in one area of the intestines. If you cut that section out, Crohn's will usually return in a different area.

:hug:
Very true, surgery is a treatment, not a cure. Sadly, there is currently no cure.

catwitch
05-30-2009, 12:40 AM
My stepdaughter was recently told that her stomach pain is "probably" IBS. I was told that it was not damaging to her, just an annoying problem. My question is, can it lead to Crohns? and what treatment is there for IBS? We are just gathering information on this problem.

vaknitter
05-30-2009, 08:42 AM
IBS cannot "turn into" Crohn's. It may be in fact that she has Crohn's, but Crohn's is diagnosed by intestinal biopsy. Not to be graphic, but Crohn's or Ulcerative colitis typically involves weight loss and bloody bowel movements.

Don't know how old your daughter is, but I know as a kid I got stomach aches when I got a UTI. IBS typically involves more than just stomach pain - there is either extreme constipation or diarhea. If the pains are bad and/or frequent you need to pursue this with her MD. You can also look for a pattern in what she eats and when she hurts. Beef, dairy products, fresh veggies, caffiene are all pretty hard on our systems and she may need to take a break from them for a little while. There is also a chance that she has mild chronic constipation and that she needs to increase her fiber intake and move her bowels more often.

Best of Luck

tokmom
05-30-2009, 10:13 AM
Ow, the poor guy! I feel for him!

Knitting_Guy
05-31-2009, 06:22 PM
My stepdaughter was recently told that her stomach pain is "probably" IBS. I was told that it was not damaging to her, just an annoying problem. My question is, can it lead to Crohns? and what treatment is there for IBS? We are just gathering information on this problem.


IBS and Crohn's are completely different conditions and, while the symptoms are nearly identical, they are unrelated. To make a diagnosis of IBS they would first have to do physical exams, including colonoscopy and possible biopsy, to rule out Crohn's and other similar conditions. I've been through all the tests, more than once.

If I were you I'd see a specialist and not accept IBS as a diagnosis without extensive testing to make sure it isn't Crohn's or colon cancer.

While IBS is often quite painful, and very inconvenient, it isn't at all fatal. The worst it does is at times one may experience ruptures in intestinal blood vessels from the spasms, resulting in bloody stools. In and of themselves they aren't serious and heal on their own, but can be scary for someone who hasn't experienced this before. There are also two types of IBS, "D" type which results in near constant diarrhea, and "C" type which results in almost constant constipation. Both result from the digestive system's inability to process water correctly, but are treated differently.

Get her checked and don't accept and "lazy" diagnosis.

Puddinpop
06-01-2009, 10:46 PM
I have ulcerative colitis. When mine got very bad, they talked about a transfusion. I don't remember the details because, when I went to the doctor thinking I would have this done, he decided he would try 9 pills of Colazal a day,3, 3 and 3. This has worked for me and I have been on this for several years. When mine got so bad, it was a combination of colitis and Graves Desease. I also had my thyroid removed.

Knit4Fun
06-06-2009, 07:31 PM
I just found this thread and wanted to take a minute and chime in.
DH has suffered from Crohn's since he was a teenager - he was hospitalized several times during his college years - and had a really rough time during several stretches in his life.

He ended up with a fibrotic area in his small intestine two years ago, so they had to do surgery to remove that area (they removed a couple inch section of small bowel) because it was so inflamed that he couldn't keep anything down. The first time it happened, they tried simply giving him anti-inflammatories to see if that would do the trick, but since it came back and likely would keep doing so, the decision was made to do surgery. He was very uncomfortable for a while afterward, but it was nothing compared to the pain and discomfort of not being able to keep food or liquid down!

Right after the surgery, he and his doctor decided to give Remicade a try. He goes in to the hospital as an outpatient and receives some Benadryl and then the two hour Remicade treatment. His only discomfort is if the nurse doesn't do a good job with the IV line. He is in a room with up to three other people and usually falls asleep during the treatment (due to the Benadryl and probably the boredom). He takes the rest of the day off afterward and comes home to have lunch and take a nice loooong nap.

The Remicade treatments are so expensive...if we did not have insurance coverage, we would not be able to do them at $4000+/treatment (treatments are every other month). But thank God they have kept the Crohn's in remission since he started them. That isn't to say that he feels worse when stressed, and it doesn't fix all the symptoms but it does keep them from getting worse and impacting his daily life even more. He tried all the other remedies (medication, supplements, therapies of all sorts) and this was the best solution for him.

Remicade has come with some side effects for DH - namely, he sometimes gets red spots that kind of look like pimples without heads but they do not itch - a few hurt, but most don't feel any different. His doctor said that it could be a remnant of infection trying to escape the body as a result of the powerful immune-suppressant Remicade. Not sure if that's what it is or not, but it's one more thing to deal with for poor DH. But as he says...red spots are preferable to a full-blown Crohn's attack.

Hope that helps at least a little...

tokmom
06-10-2009, 11:13 PM
I just found this thread and wanted to take a minute and chime in.
DH has suffered from Crohn's since he was a teenager - he was hospitalized several times during his college years - and had a really rough time during several stretches in his life.

He ended up with a fibrotic area in his small intestine two years ago, so they had to do surgery to remove that area (they removed a couple inch section of small bowel) because it was so inflamed that he couldn't keep anything down. The first time it happened, they tried simply giving him anti-inflammatories to see if that would do the trick, but since it came back and likely would keep doing so, the decision was made to do surgery. He was very uncomfortable for a while afterward, but it was nothing compared to the pain and discomfort of not being able to keep food or liquid down!

Right after the surgery, he and his doctor decided to give Remicade a try. He goes in to the hospital as an outpatient and receives some Benadryl and then the two hour Remicade treatment. His only discomfort is if the nurse doesn't do a good job with the IV line. He is in a room with up to three other people and usually falls asleep during the treatment (due to the Benadryl and probably the boredom). He takes the rest of the day off afterward and comes home to have lunch and take a nice loooong nap.

The Remicade treatments are so expensive...if we did not have insurance coverage, we would not be able to do them at $4000+/treatment (treatments are every other month). But thank God they have kept the Crohn's in remission since he started them. That isn't to say that he feels worse when stressed, and it doesn't fix all the symptoms but it does keep them from getting worse and impacting his daily life even more. He tried all the other remedies (medication, supplements, therapies of all sorts) and this was the best solution for him.

Remicade has come with some side effects for DH - namely, he sometimes gets red spots that kind of look like pimples without heads but they do not itch - a few hurt, but most don't feel any different. His doctor said that it could be a remnant of infection trying to escape the body as a result of the powerful immune-suppressant Remicade. Not sure if that's what it is or not, but it's one more thing to deal with for poor DH. But as he says...red spots are preferable to a full-blown Crohn's attack.

Hope that helps at least a little...

I bet that is what the drug is. Soo expensive!! Everyone that suffers this has my sympathy. What a horrible disease to have your entire life. :hug:

Jan in CA
06-11-2009, 10:41 AM
I have no input, but I'll say the cost of medication is a crime. When you hear how well the pharmaceutical companies are doing and then the people struggling to pay for medication it's shocking. :hair:

auburnchick
06-11-2009, 08:21 PM
The cost is why my dh quit doing the treatments. It's too bad that good treatment is only an option for the wealthy.

Knit4Fun
06-11-2009, 10:25 PM
At some point, our healthcare system has to change. Maybe when the babyboomers are all in need of medications and cannot afford them. Maybe when a high profile politician has a family member die and it could have been prevented but for the cost of treatment. Maybe it will take a celebrity to really get on the bandwagon about this. Or maybe we can all work really hard to find AND fund preventative education programs to help reduce dependence on medicine. Not saying there isn't a very valid need for it, but our society is trained by drug companies to reach for a pill anytime life isn't perfect. If we leave the medication for the truly sick people who are suffering and need it, then maybe we can get the pharm companies to focus more on prevention or market wellness instead of illness.

The simple reason why medications cost so much is that the pharmaceutical companies can charge what they do and get away with it because enough people have health insurance to afford the drugs but the profit margin balances out with those that don't but can still afford the medicine. I certainly believe that there are well-meaning people who work for pharm companies, but there is also unbelievable greed in some of these companies as well.

I once read a really interesting history of medicine that discussed an ancient system of Chinese healthcare in which doctors ONLY got paid if their patient was still well when they came in for their regular check-up. If they were sick or diseased, the doctor didn't get paid because they had failed the patient by not helping to keep them well. Food for thought, isn't it? We get what we focus on and our society focuses so much more on disease then prevention or education.

Okay, off my soapbox. :teehee:

auburnchick
06-12-2009, 12:18 AM
Hmmm...I'm not so sure that I agree with not paying doctors unless a health crisis has been resolved. Sometimes a body is going to do what it's going to do, no matter what medicine is applied. You see it all the time with cancer patients.

I think it starts from youth...teaching people to eat better and not mass producing food that is bad for our bodies. Garbage in, garbage out.

Knit4Fun
06-14-2009, 12:19 AM
Easier said than done, AuburnChick...that's for sure. But I agree that kids need to be taught more about eating healthy and what that means from an early age.

It's not so much that doctors shouldn't be paid if someone gets sick, but it's an interesting concept to turn the healthcare system around because really what we mostly have now is a sickcare system rather than a healthcare system. It's more of a "go when there is a crisis and THEN take care of it" system instead of a "teach me how to stay healthy and avoid disease" system - and that needs to change or we just need to get rid of processed foods and high fructose corn syrup once and for all! :mrgreen:

auburnchick
06-14-2009, 11:28 AM
or we just need to get rid of processed foods and high fructose corn syrup once and for all! :mrgreen:


This is the key. :thumbsup: