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Posted 6/1/2010 10:55 PM (GMT 0)
First off, hi everyone. I have been on here and read through many threads and thought I would just go ahead and register.

My wife has UC. She had her first flare around this time last year, and was diagnosed shortly there after due to a colonoscopy. She is 23 years old and weighs 95 pounds. She is on Apriso and we have been struggling together to get her symptoms in check as well as her weight back to the normal of about 110. I feel like I am failing. I took on a new job, without benefits, and less pay than the last. She is going into an internship this month where she will work a nine to five with out pay. We pay the 250 something each month for the Apriso as well as much more in Protein complexes and diet products. I feel that she is not getting any better, and she is on a steady downhill path in weight. I have been searching for a job with benefits, but I can not spend too much time since I work full time. I can't quit either to search due to, well, that just isn't going to happen anytime soon. I feel we need the benefits, especially if anything were to happen where she needed hospitalization.

Long story short, I just wanted to hear a few voices of hope. Those who have encountered this stupid disease with similar lifestyle situations and have found a way to get through it. Any advice on short cuts to not having medical benefits with UC. Any words of wisdom, hope, and advice would be greatly appreciated.
Posted 6/1/2010 11:18 PM (GMT 0)
     I couldn't tell you where to turn to get financial help, but there are others in here who, I am sure, could.  But I can tell you to save your money on diet products and Protein complexes.  Stick to the advice of her doctor.  Medical offices should be able to offer you some advice on how to get financial help too.  There are programs out there.

     Some people have had luck following the SCD diet.  Personally, I never tried it and my doctor didn't have much faith in it.  Is she just on the Apriso?  Has she been on prednisone?   A lot of people try to steer away from the prednisone but that is the only drug that ever helped me achieve remission.  Unfortunately, I have become prednisone dependent and ran the gamut of drugs and am now facing surgery.

Posted 6/1/2010 11:25 PM (GMT 0)
She is on a steroid but I am pretty sure it is not Prednisone.

She has a really hard time making it through the night, consistent urge to go, and is losing a lot of sleep. One thing about my wife is she loves her sleep. I would say her main cause of stress lately is not enough sleep. Any advice on getting through the night?
Posted 6/1/2010 11:56 PM (GMT 0)
No sleep really makes it worse. I always asked my doctor for Ambien. I would take a half a tab and sleep through the night. I don't know why but my UC is always bad at night and in the morning. Prednisone is really cheap and it is the only thing that would start to get me out of a flare. It also helped me put on the weight because I could eat again and not have that terrible urgency. It is a terrible way to live but it will get better. Just support her and good luck to you.
Posted 6/2/2010 12:30 AM (GMT 0)
Hi, and welcome to the forum!
You might check out the sticky thread at the top of the page - UC Resources - and go to the NeedyMeds site. The list says Apriso isn't covered, but... it couldn't hurt to follow up and ask. There are also lists of low-cost or sliding-scale clinics, it says on the bottom of the page.
The frustrating thing about UC is that we are all different and we are helped by different things: diet or not, different meds, different complementary things (probiotics, soluble fiber, etc.)
I am one for whom diet doesn't make much difference, except that raw, gassy or greasy things make my symptoms worse if I'm flaring. And for me, probiotics help a lot, as dose soluble fiber. Others will find these things don't help them - unfortunately, trial and error is the only way to find out.

If your wife can tolerate dairy, yogurt wouldn't be a bad place to start to get some probiotics. There are recipes on here for homemade yogurt, which has more probiotics in it and is cheaper. (search "Homemade yogurt" and you'll get tips on yogurt and kefir-making.)
Sometimes doctors try antibiotics... there's been a thread the past day or so about someone being helped by Flagyl.... but for flares that won't go away prednisone is the mainstay of inexpensive treatment. The dangers there are that sometimes it's hard to taper and get off it, and it's dangerous in the long-term.

Have you read general info, as from the CCFA?

My son had a flare this spring and the primary symptoms was getting up at night to poop (sometimes 4 or 5 times, with cramping in between) and the first thing his GI told me when I called was to have him not eat in the evenings to try to help that.

So, welcome, again, ask away, and your wife is welcome to join us herself!
Posted 6/2/2010 2:27 AM (GMT 0)
If she's on a steriod that isn't pred, it's probably entocort. Entocort does not work for everyone, I know it did not work for me. The side effects are worse for pred but it will help control the flare quicker. Also you may want to ask about rectal mesalamine.

Oh, and many drug manufacturers have patient assistance programs. You might want to search for them online.

Another idea is to switch to sulfasalazine to lower costs. It is available as a generic so it's much cheaper than the newer meds, and works for a lot of people. I was considering it but cannot take it as I am allergic to sulfa antibiotics which are chemically related.

Also the diet products probably aren't doing much...which ones are you using? The only ones which consistently seem to help UCers are probiotics, which you can get from yogurt, fresh pickled foods, etc. Turmeric, a spice, and omega-3 fatty acids are also supposed to help but the results are less consistant. Also, she should be on a calcium and d supplement if she's on any steriod. Plus folate if she switches to sulfasalazine.
Posted 6/2/2010 12:57 PM (GMT 0)
hi husband

Glad you DW has your support, that is sooo important.
My suggestion (as always if you've read posts) is to try diet modification using the Specific Carbohydrate Diet. High protein, low carb, to get symptoms under control. To maintain strength there's nothing better than protein and good fats which this diet emphasizes.
She will need to eat as many high calorie foods as possible while excluding carbohydrates and sugar which feed the bad gut flora.
It is a very healthy diet.

The protein shakes may be fine (my DH who weight trains uses them) but I stay away from any prepared stuff because you just don't know what is in them chemically. Our guts are super-sensitive.

I know you feel helpless without insurance but I have good insurance, took all the pills prescribed for me and had no positive results for 10 years. Diet mod. has been my cure and perhaps can help her until you are able to get a health insurance plan.

Has she had a blood test? Shouldn't be expensive at a local clinic and could tell if she's anemic.
Buy some D3 and take 4,000/day until you see the test results and then perhaps a higher dose.
Buy a juicer and make fresh veggie juices (also fruit juice in moderation-keep sugar consumption low-fruit has a lot of sugar).

Best wishes

www.breakingtheviciouscycle.info/
Posted 6/2/2010 3:29 PM (GMT 0)
She is on Pednisone, I had to ask, she is very cautious about taking it though. She cuts here pills in half.

As for diet products, we use Ensures and GNC 2200 gold, which are the most costly. Then we go through Good Belly, she loves this stuff, good source of probiotics. She takes fish oil, folic acid, vitamin c, calcium, and a multivitamin every day. We keep track of soluble and non-solubles, to ensure she isn't getting too much of anything bad. She got off dairy a while ago, almond milk is her new fave, we tried the soy, but she didn't like it as much as the almond. As for food she really hasn't changed too much, only staying away from the things we know will upset her stomach type thing. I would like to take it one new thing at a time. I feel like we are adding too much all at once and we'll never know what it was that actually helped when that time comes.

Excersize? I know she is at an unhealthy weight, but once we get her back up to normal I really want to get her on an excersize regiment. I have always been really active and I know how it can make me feel physically and emotionally. She never had that urge... So are there any excersizes that help with some of the symptoms? Or are sit ups and a light daily jog not such a good idea with UC? I feel if she got some sit ups in her cramping would lighten up, as well as a light jog helping with stress and sleep.

Also as much as I don't like talking about this, I wanted to ask. Is there a way to strengthen your sphincter muscle? She seems to not be able to hold it in at all. It really is one of her most embarrassing concerns regarding her UC. If she could get rid of just that one thing she would probably be so much happier. I would like to help her with this one mostly, she has a deathly fear that one day she will not make it to the toilet and well you get the idea. Any advice on this one?
Posted 6/2/2010 7:01 PM (GMT 0)

why dont you look into drug trials in your area , maybe there is a free study she can be involved with, where they will give free meds and medical care and she may even get paid,.  I have done 2 of these already one was in 1991 at temple univ and the other was in 2008 for entocort (which did not help at all!)

have you looked into purchasing health insurance just for her?  In NJ a friend of mine purchased a policy for about 250 a month, which you are spending in just 1 medicine.

Tell the GI doctor that you have no insurance and can not afford the meds,l maybe he will try her on the least expensive medication first to see if it helps. Also the drs office may have samples, and there are drug programss that help people out (google) Also, where is her uc? if it is in the proctosigmoid area, she should be doing rectal meds as well.  once you are in a flare, I find the oral meds do very little to help get into remission, Ive been able to get in remission with rectal meds. 

Tell her to keep a food diary and symptom diary.  By doing this I discovered that by eliminating coffee and dairy I went into remission (after a stubborn 1 1/2 year flare)  Even though I was taking all of my meds, my system could not heal becase it was constantly being reinflamed daily.

My first flare was when I was 23 also, after 4-5 month went into remission for 10 years!

Hope your wife feels better soon!

Posted 6/2/2010 7:04 PM (GMT 0)
answering your question about sphincter muscles- i dont think that will do anything.  what she has, the urgency, is a common thing with uc (and one of the worst ones, imo)  it is because her rectum is so inflamed and that is why she has the urgency. 

Posted 6/2/2010 7:13 PM (GMT 0)
Thanks for all of the replies everyone. I am not too certain where we are going to go next. I feel as if everything is just taking the path towards a downward spiral. Uncertain work, no benefits, her condition, lack of income, her internship, sometimes I feel like I need some help as well. I am not sure we will be okay, much less myself, but I have a feeling this site will be a great source of advice and information to assist the matter.
Posted 6/2/2010 7:18 PM (GMT 0)
what state are you in? there may be some medicaid programs you can get. ( I am a social worker so i deal with this frequently)

Posted 6/2/2010 7:30 PM (GMT 0)
At one point my GI switched me from Apriso to Balsalazide, which is generic colazol. Although its a different drug, its supposed to have similar/same affect, and is generic so its much cheaper. Something you might want to ask your GI about.
Posted 6/2/2010 8:15 PM (GMT 0)
Cutting her dose of pred might be limiting her recovery. I understand her hesitation in taking it but it can improve one's health fairly quickly if taken as prescribed. The trick is to get well and then taper off as soon as possible.

Sue
Posted 6/2/2010 8:43 PM (GMT 0)
1.) Don't reduce prednisone without a doc's supervision. She could be making the flare go on longer and actually may increase her risk of dependency. You're better off "kicking" into remission with a high dose then tapering, as opposed to flaring on a lower dose.

2.) Have you looked into government health insurance programs? You may qualify. In my state, Neighborhood Health Plan will supply coverage for folks making under a certain amount as a family.

3.) Obama's new health care bill allows for people to get on their parents' plans up to age 26. Do your wife's parents have health insurance?

"Federal Action
The U.S. House of Representatives approved a Senate health overhaul bill and sent it tothe president for his signature on March 21. The President signed the bill into law on March 23. The House also passed a package of amendments that will change provisions of the original bill. That was sent to the Senate for action on March 22, 2010 and was passed into law. This reform would requires health plans to allow young people up to their 26th birthday to remain on their parents’ insurance policy, at the parents’ choice regardless of marital status and would be effective 6 months after enactment--October, 2010. The legislation was the subject of a fierce partisan battle and passed with only Democratic votes. Republicans have vowed to continue their opposition."
Posted 6/2/2010 10:13 PM (GMT 0)
I will let her know not to lower the dose of her prednisone. Her mom is pretty much not interested in putting her back on her insurance even if she could. We have been looking into free clinics, and or medical services for those in need. I would like her to get some blood work done.

We reside in the little hell hole known as Reno NV. There are some public medical services available and they are pretty far and in between, but we have them on the list.

I think this little bit of a rough patch has to clear soon or later. I hope, but lately I have been feeling quite hopeless.
Posted 6/2/2010 10:21 PM (GMT 0)
Husband - as the others said so well, please, she should NOT cut the prednisone pills in half. Much, much better to be on as high a dose as it takes to just put this thing out of inflammation, and then taper off!
Pred is a dangerous drug if not used skillfully, but it also is a really good and potent anti-inflammatory if used as directed so it can do its job!
UC is tough on the patients and our families - we all know that all too well! Hang in there, it ought to get better. In the meantime, if she keeps a food and trigger journal, maybe you could journal the whole odyssey from your perspective....might help you both in different ways ....
Posted 6/3/2010 12:16 AM (GMT 0)
Re: sphincter control
No it not not the sphincter control that is at fault. The inflamed colon is the driving force on urgency and diarhhea. There is no control unless the colon inflammation is eliminated. In my case and many others urgency is the last symptom to be eliminated. It is the colon's signal that it is in trouble.

Exercise: is an individual choice. It was just not possible when things were bad, made me worse. Don't pressure her to do it, let her decide. (Try to get Rx Bentyl for cramping)

It is hard for someone who doesn't have UC to know what it is like. It is unpredictable. One day things aren't too bad and the next they are awful. Hard to make plans, hard to make it through a day. It makes a person feel like they can't trust their own body because it is not in our control. Hard to go anywhere because of worrying about accidents.

My DH is fantastic and has been throughout the 10 years. Didn't make me feel bad when I couldn't function. Didn't ask too many questions and make me feel worse by having to explain WHY I couldn't do something. Supported me whatever I decided to do dietwise. Listened to me when I cried and knew he couldn't fix it.

If I could make one suggestion it's "Listen and be there". That's all.
Posted 6/3/2010 4:43 AM (GMT 0)
You're an angel to care enough to seek help for your DW here!

I just want to reiterate all that has been suggested here - especially imagardener's last post and her previous one where she stated that the shakes might not be good for our sensitive systems. I don't know what is in Ensure, but I know it was not designed for this specific need so it likely contains ingredients like carageenan etc. which is benign for most folks, but can be really tough for UCers. There are lots of diet threads on this forum, and book recommendations which might help you get on a dietary path that works better for her.
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