Hi,
This is not real pleasant subject, so I will just use the word one more time. From now on today diarrhea will be referred to as the d-word. I wanted to use it a couple times so that this might show up on a Goggle search. Many of my readers find this blog through Google, Ask or Right Health. D-word is one of the most frequent problems we have, so I wanted to have a separate post about how Welchol helped me.
Looking at some old posts from September to December, I wrote of being increasingly sick from the d-word. It started at two days a week and increased to daily. That's a very common problem with carcinoid, and I began to despair of ever being well again. I hadn't expected to become housebound so soon. I'm not even 60 years old--I have lots of things to do still! And I know some of you are 70 and sitting there saying the same thing. We want our lives to be full.
In November I had a regular appointment with my cardiologist (Dr. Chen) whom I see about 3 times a year. I told him about my symptoms, and he suggested I use Welchol. We had just gotten my "bad" cholesterol down to 80, and Welchol is used to lower cholesterol. He explained that it is a packet of resin beads that attract cholesterol, and the cholesterol passes out with the feces. It is not a drug that circulates in the blood stream. It also makes people constipated.
I used Welchol daily for the first 30 days. I would start to get d-word, mix the Welchol with water, drink it and wait. About 90 minutes later it seemed to have worked, and I could resume my activities. It would take about the same amount of time for Lomotil to work, and that is a drug that paralyses the intestines. Also, in weeks were I was having d-word daily, I could just use the Welchol in the morning and go out that day. I went through the first box of Welchol in 30 days.
It's February and I still have half of the second box in my home. It's ready in case I need it. I hope Dr. Chen isn't disappointed that I have not kept up using it daily. He wants my bad cholesterol down to 70!
The information on front of the packet is: Sugar free. Welchol (colesevelam HCl) For Oral Suspension. 3.75g. Citrus Flavor. Single-Dose packet. Each packet contains 3.75 grams of colesevelam hydrochloride. Phenylketonurics: CONTAINS PHENYLALANINE 48 MG PER PACKET.
Note: Welchol is gritty. It's not fun to take, but you can dilute it in 1/2 to 1 cup of water. Someone wrote me that you can put it in soda.
UPDATE 12/17/11
I am happy to report that Welchol worked well for me for 13 months. It would stop diarrhea for 10 -24 hours for me. This month, however, I noticed it only worked long enough on a Sunday morning to get me and my passengers to church and back home again. It was effective from about 8:30 am until 12:30 pm, but that was long enough to get to worship. I spent the whole sermon feeling lots of activity in my intestines, and hoping I could get home in time. I did get home, but was disappointed Welchol was not as effective as it had been.
Yesterday I was very ill from carcinoid. I went through three doses of Welchol and two shots (100 micrograms each) of Octreotide Acetate. Basically, I went through two whole cycles of emptying my intestines. The 2 Welchol and the first injection lasted long enough for my daughter to drive me to a doctor's appointment, rest and walk my beagle three blocks. Then shortly before bedtime, I was sick again. I took more Welchol and took the second injection. That was sufficient for me to sleep through the night. I'm still wearing a bathrobe today and sitting around the house.
I have more understanding of the carcinoid patients who talk about the unrelenting d-word. It seems like it will win in the end.
I hope this helps someone.
Sharon
I am 38 and have suffered with IBS since I was about 18. It got to the point where I didn't want to leave my house to go anywhere because I was afraid that I wouldn't be able to find a restroom if my stomach started cramping. There were times that I would stay home. Long trips were impossible or I would have panic attacks while in the car. I took a Home Depot bucket and toilet paper with me everywhere I went. It was also hard to sit in church, a wedding, choir concert, sporting event because I was afraid it would hit and I wouldn't be able to find a bathroom. My husband knew that as soon as we go to where we were going I had to find out where the restroom was. It was normal for me to have diahrrea every day. I tried many many things, lotrinex, lomotel, xanax for when I went on trips, probiatics...you name it - I tried it. Nothing really worked. A lot of my problem was anxiety and nervous stomach. I made it worse by worrying over it, but regardless - it was there and it was a big problem. I read online over a year ago about Welchol. My sister has the same issues with her stomach and she had already tried it and it worked. She only takes it when she needs it. I take a packet every day with about 1/2 cup water and 1/2 cup orange juice. I have found that if I put it in a bottle with a lid and shake it - it dissolves better. I don't have diahrrea every day anymore...hardly ever. I don't have high cholesterol. My Dr. prescribed just for IBS and it works. It's my dream drug. The only time I have diarrhea now is if I'm sick or if I forget to take the Welchol. If I miss it for two days, I have stomach issues so it's an every day thing for me, but it's worth it.
ReplyDeleteI'm glad Welchol worked for you, too. I know what it's like to locate every restroom, and so does my husband. Stay well.
DeleteOi!
ReplyDeleteEu sou brasileira, moro no Sul de meu pais... a visicula em 2002 e fiquei com problema de diarreia frequente, tomei por muitos anos colestiramina em pó....Mas a uns meses atras eu fiquei sem meus remédios aqui no Brasil e tive que importar da alemanha, foi então que uma prima minha que mora nos USA descobriu para mim o Welchol, e ela me mandou só que em comprimidos, e foi maravilhoso para mim tomar esses comprimidos porque me ajudou muito. Só lamento que aqui no meu pais não tem esse medicamento.
Só gostaria de informar voces que podem tomar em tablets, muito mais facil ingerir e de tomar.
Deus abençoe muito a vida de voces.
Hi I have bile acid problem from gallbladder surgery.. So I though yay welchol will work for me since its also a bile binder but its made me worse.. I never ran to the toilet in the AM I do now. I really give up with what to try.. I've tried questran also and colestid it just makes me worse. Does it take awhile to work? I'm only 27 and my life is over I can't take my children on holiday or anything because of this. I feel like a bad mum diarrhea has really got me! :(
ReplyDeleteI am sorry to hear about Welchol not helping you. It does work that day, if it is going to help you.
DeleteI use an injection of Sandostatin (also called Octreotide) to help control the diarrhea. Have you tried doing an elimination diet of one thing at a time to see what foods upset your system?
You will figure this out over time. It is discouraging now, but you will learn better how to control diarrhea, or doctors will come up with a better treatment. Do the little things with your children that you can do. They will learn patience and kindness because of your illness, but it is hard. I have felt bad about my daughter missing out on things, too.