When Michael had his colonoscopy several weeks ago, the doctor assured us that Michael was on the right track to getting better and that the meds he was on would do the trick. We asked him about Remicade and surgery then- just so we could get an idea how serious Michael's condition has become. At that point, we were told that he was not sick enough to be a candidate for either.
At Wednesday's appointment, we discovered all that had changed. Not only did the doctor tell us that he should be on Remicade, he told us that he wanted him to start the infusions this Friday. That gave us a lot to talk about when he got home!
Through this whole process, let me be very clear that our doctor has been very helpful and taken his time to explain things to us and answer all of our questions. A very sweet friend from our church works at this office and has bent over backwards to get Michael the help he needs- whether she is at work or at home. We are extremely thankful for them and know that they are doing their best.
Since yesterday, Michael and I have done as much as we can to find out everything there is to know about this treatment. We are not medically trained, and want to trust our doctor, but we want to know exactly what we are getting into as well.
Several things that were red flags for us:
- It is expensive. VERY expensive. I had heard this from others that know of this, but didn't know of specific figures until digging a little deeper. I googled "cost of Remicade infusions" and browsed through several sites that listed what other Crohn's patients are paying or have paid for a SINGLE infusion. We are talking thousands of dollars. Some had posted that they were paying $10,000 for each infusion. Note: our insurance does cover 80% of this treatment. There is actually a way to qualify for financial help with the copay and other 20%. When you need help to pay the 20%, you know it isn't going to be cheap!!
- I do try to be frugal, so I double-checked to see what this stuff is to make sure it can't be made at home or purchased at Walmart. Here is what Remicade is: REMICADE is a chimeric IgG1κ monoclonal antibody with an approximate molecular weight of 149,100 daltons. It is composed of human constant and murine variable regions. Infliximab binds specifically to human tumor necrosis factor alpha (TNFα) with an association constant of 1010 M-1. Infliximab is produced by a recombinant cell line cultured by continuous perfusion and is purified by a series of steps that includes measures to inactivate and remove viruses.
REMICADE is supplied as a sterile, white, lyophilized powder for intravenous infusion. Following reconstitution with 10 mL of Sterile Water for Injection, USP, the resulting pH is approximately 7.2. Each single-use vial contains 100 mg infliximab, 500 mg sucrose, 0.5 mg polysorbate 80, 2.2 mg monobasic sodium phosphate, monohydrate, and 6.1 mg dibasic sodium phosphate, dihydrate. No preservatives are present.
Doesn't that answer all your questions?!?
- Along with it being pricey, it has many possible negative side effects. And if the Remicade doesn't help Michael now, he will not be able to try it again. I don't understand this exactly, but if it doesn't work, then there is no turning back- he would have to have surgery. And once they've started with the surgery route, there is no turning back from that either. He would most likely face surgery after surgery to remove the "bad" parts of his colon & intestines. This obviously has negative side effects too.
It was a rough day yesterday, trying to sort through such a huge decision so quickly. Michael has been sick- very sick at times- throughout the past few years. I cannot describe how difficult it is to watch someone deal with so much pain doing something that I take for granted- being able to eat and digest food normally. As mentioned in earlier posts, this disease depletes your energy supply due to malsorption of proper nutrients your body needs. So at times, it has been quite tiring for me, too- to care for a sick husband, and tend to two little ones and all the while have another sweet baby growing in me (and taking my precious energy)! I do not tell you this to get pity. Just a moment of honesty from my perspective on things. It is not easy having to deal with this, but God has given us grace and so much to be thankful for. Even if I would have know that Michael had Crohn's when we started our relationship, I know I would have still chosen to marry him. There are no regrets, just hurt to watch someone you love suffer.
Back to the decision making...
We both came to the same conclusion, thankfully. That always helps! We would like to feel like we have exhausted every effort possible before starting Remicade, so Michael has been in contact with a nutritionalist that has been recommended by some of our close family that are going through his treatments.
This nutritionalist- Dr. Campbell- has a son who has Crohn's Disease. His son has been in remission for years. Even though we haven't met Dr. Campbell yet, he has known about Michael's case for a while now since our family has been talking to him about Michael. Michael spoke to him today and Dr. Campbell is quite confident that he will be able to help us out. We do not know everything that this will involve yet, but I have a sneaky suspicion that it may involve revamping my bargain shopping and turn that upside down.
For now, Michael is not allowed to eat anything with wheat or dairy. Those things tend to inflame the colon. So do fresh fruits and vegetables. My, I think PLASTIC is about the only thing he can eat now.
I've already been challenged to supply him with wheat/dairy free foods and he has only been on this restriction for- oh- 2 meals. Honestly, I'm overwhelmed and I'm not sure where to begin. It is daunting to know that most of this experimenting weighs on me since I do all the shopping and cooking. I am glad to be trying this though. And very glad that Michael is going to be a willing participant. I think I'm going to have to prepare food for him and not tell him what it is until after he tastes it. It's going to be interesting...
Of course this puts a different spin on my meal/budget planning. For instance. Normally I spend $1 or less for a loaf of bread. Tonight, a much smaller than normal loaf of wheat and gluten free bread (that had freezer burn) cost me $5. And it was on sale. So don't count on seeing many pictures of the great deals I snagged any time soon... (thankfully the bread was good, i tried it)
So that is the short version of where we are at with this. Pray specifically that the nutritionalist is able to figure out what Michael needs and how to balance out his system. This is not a quick remedy like Remicade would be, but Michael is willing to give it a try. Pray that he can gain some strength and energy back, and that he wouldn't be discouraged through the process. We have plans to travel several times over the next few months and would appreciate your prayers regarding that as well.
3 comments:
I can say, "I've been there" because I have been there and still am. I hope, with all of my heart, that the diet will work wonders for your husband. I loved what you wrote about marrying your husband even if you had known about his Crohn's. My Michael told me on our second date that he had Crohn's and I never gave it a second thought as to whether I would continue dating him or not;). Here we are 13-1/2 years later and married for almost 11 of those years. I love and respect him so much and am honored to be his wife. Okay, enough sappiness;). My prayers are with you and your husband.
I hope that you will give updates as to how the new diet works for your husband. ;)
Michael has been having flareups for a few weeks now after being in remission for the last 2 years. He went to the doctor on Monday and asked for a Rx of Cipro (antibiotic). For some reason, it worked really well for him last time. We're not sure if it will help him this time around but it's worth a try. He has a colonoscopy this coming Monday after not having one for 7 years!! The doctor was surprised that it had been so long but no amount of "encouraging" from me prompted him to schedule one. He's such a booger sometimes:).
He did the Remicade and it worked amazingly well for him but the abdominal wall infections (due to his lowered immune system) nixed that treatment. Such infections are a rare side effect of the treatment and Michael ended up having to forgo the Remicade, much to his disappointment. Our insurance covered all but the co-pay, which was a huge blessing. It's ridiculously expensive. He's had 2 bowel resections and those really helped but it is major surgery so the recovery is not exactly a walk in the park.
I'll be honest and say that Michael doesn't put much stock in changing one's diet but I know of people that do so well on a diet plan. I think that he balks at anything that messes with the foods he enjoys. I DO believe that some Crohn's sufferers fare really well with diet modifications. I hope that your Michael is one of them. Unfortunately, the diet that my husband tried didn't help him and now, he's not willing to try another one:(. Maybe someday, he'll change his mind but for now, he'd rather pop a pill. That sounds terrible, doesn't it?
It is easy to worry and fret. I'm a bit concerned about what his colonoscopy will reveal and what the doctor is going to say. Michael has a terrific attitude about his Crohn's but it wears on him physically. He knows that it's what God has for him and he doesn't question that. I think that I deal with more anxiety over it than he does.
How is your Michael's diet going so far? Is he feeling better? I am curious as to how he will do with it. I will keep you guys in my prayers.
I'm praying for you, Nina!
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