Motilium – My new gastroparesis treatment

I haven’t posted a real update here in a while, besides my Something for the Weekend posts every Friday. I saw the GI specialist team at Froedtert and the Medical College of Wisconsin in Milwaukee late last month. It was a very disappointing experience.

A second opinion

They had all my records and pretty much focused on two things, my thyroid function and a CT scan from two months earlier that showed some constipation. They theorized that my constant, rather intense abdominal pain would go away after a bowel cleanse and wanted me to take a medication to speed up my bowels called Linzess. They also thought my thyroid being low was the cause of my GP and said once that got resolved, I shouldn’t have any issues … and come back in three months if you’re not feeling better.

They questioned my gastroparesis diagnosis in general, pretty much discounting my gastric emptying study (which is impossible to fake or skew in any way and definitively showed I had severe gastroparesis with 80% of food retained undigested in my stomach at 4 hours). They pretty much ignored the fact that I was requiring a liter of fluids a day and IV nausea medication to even function at a small portion of my normal level. They also didn’t seem to care that I literally could not eat solid food without being horribly sick in bed for days on end. They told me to drink more Ensure and pretty much dismissed me. The only good thing that came out of it was a referral to a Froedtert endocrinologist.

The whole experience was beyond frustrating. I researched Linzess and found that it inhibits the absorption of thyroid medication, therefore I never filled the script. I did their prescribed bowel cleanse and low and behold, it made no difference in how I felt or any of my symptoms. Then I called my local GI doctor and asked him to treat me while we wait for a third opinion at the Mayo clinic in Rochester, Minn.

New treatment

He agreed and referred me to a pain management clinic for my abdominal pain, increased my IV fluids to 2L a day as I was still getting sicker and losing weight rapidly, increased my IV Zofran (nausea medication), and prescribed something called domperidone, or Motilium. It is not FDA approved, so I had to order it from overseas in New Zealand and hope they didn’t confiscate it at customs. They didn’t and it arrived safe and sound last week.

Motilium works by increasing stomach and intestinal parastalsis, thereby allowing your stomach to empty more quickly and food to move through your intestines faster. Many people in my Facebook gastroparesis support group have had amazing luck with this medication and have even gone back to being able to eat regular meals again after some time.

I have been instructed to take 10 mg twice daily. After being on the medication for two weeks, I can slowly start introducing solid food back into my diet and see how my body handles it. It’s been a week and I can already tell my nausea has improved and I’m requiring much less of the IV Zofran to manage it. I’m very encouraged that in a week, I might get to enjoy eating little bites of “safe” foods. (I did cheat and eat a piece of pizza last night and I’m happy to report that it went pretty good so far!). I’m holding on to a lot of hope that this is going to be the answer, because if it isn’t, I’m not really ready to face the reality of a feeding tube or TPN (total parenteral nutrition delivered via IV) at this point in my life.

Endocrinology

I was able to see the Froedtert endocrinologist two weeks ago who explained that my TSH is now at an optimum level, but the two hormones controlled by the thyroid gland – T3 and T4 – were still very low. He took the time to explain to me that if we were to treat those hormones to get them into the upper two-thirds of the therapeutic range, it would make me even sicker. He explained that those hormones regulate how fast you burn calories and told me that essentially, I was quite literally starving to death slowly and we wouldn’t want to do anything to speed up the rate at which I’m burning calories because I need to be conserving all the ones I have so I do not become even more ill.

The specialist also told me that in his 35 years of practice, he has never seen a case of gastroparesis resolve once thyroid hormones are corrected. He assured me that the two were not linked, that it was merely coincidental that I got GP the same time I discovered I was hypothyroid. The bad thing about having low T3 and T4 is that I still have all the hypothyroid symptoms – fatigue, hair loss, etc. – and will until my gastroparesis is treated and I can regain some of the weight I’ve lost. Then, he said, my T3 and T4 would naturally come up to where they need to be for me to feel my best. I left that visit feeling like I learned quite a bit about both my conditions and felt confident in the care he gave me.

The future

So, right now I wait to see if Motilium is going to be the answers to my prayers. Perhaps it will allow me to eat solid food again without being terribly ill and reduce my reliance on IV fluids and medications. That would be absolutely wonderful. I will also continue to wait for the motility specialists at Mayo’s GI clinic to review my case and call me with their suggestions and an appointment this fall. I was told it could be as late as September or October before I got in there. Perhaps they have some additional suggestions as to what would help me get better. I’m open to anything.

There remains no cure for gastroparesis, only symptom management. August is Gastroparesis Awareness Month and you’ll see a bunch of posts and promotions on my Facebook page next month to raise awareness of this rare disorder. I have struggled quite a bit these past few months with coming to terms with having a serious chronic illness that has completely changed my way of life. More on that in an upcoming post…



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