Stomach Issues, Gee, Wonder Why:Let me start by stating that, I take a lot of pills. Its not a big deal and all of them are very important. I take vitamins, oral antibiotics, some oral steriods, pills for acid reflux, pills for arthritis, and then enzymes every time I eat. But lots of people don't realize how crucial those pills are to me (well, to us CFers)
I take 5-6 enzymes with meals and 3-4 with snacks (so 30 enzymes, and 10 other random pills a day). I have been good about taking them. I hate that Cystic Fibrosis affects my digestive system so much. If I can't digest anything, I won't have the nutrients I need to keep healthy, or be able to digest the food to keep weight on.
Over the years, the enzymes have gotten better and help us absorb more. I've been on Pancreas, Creon, and now have been on Zenpep for the last couples years. I love my Zenpep (read the RX list for Zenpep here) However, the enzymes weren't effective enough when I was little to gain weight, I needed the G-tube Stomach Feeding Tube. I went from 40 lbs to 95 lbs that year (8th grade-freshmen year). However, now I can digest a lot better. I still have stomach issues, but I'm not sruggling nearly as much to keep the weight on in the last month. I haven't worked too hard (in comparison to before) And I'm staying above 106 lbs.!!!!!! YAY!!!!! Yep, someone who actually wants to gain weight... Yes, I have tricks: Read About How I Gain Weight & Get Recipes here!
I've been keeping up with taking my Probiotic Pill and drinking my kefir smoothie at least every other day, I take my enzymes... And I haven't even been drinking extra ensures or doing my stomach feeding for the last month! I really think the Probiotics are helping me with the bacteria balance in my intestines and colon. Which helps from keeping my colon inflammed (which flippin hurts), so glad for Probiotics. And I'm keeping my weight on and doing so much better.If this keeps up, I hope to get my tube out in a few month (once this clinical trial I'm in is over.)
I've worked hard in the past few years to stay above 100. I struggled to be above 95 in college. At once point I was low 80s, I quickly fixed that. But...to see the difference of 5 years:
5 yrs ago
Now! So much Healthier!
So, That is about 15 lbs difference, and I'm so much more healthy now. I don't tan, that is just my skin color. Its amazing what all my new vitamins and meds have done for me!
Here's My Funny Share About My Tummy Troubles Though:
So silly me, I came to visit my Sister (pictured above with me) for a few days before Christmas. I got here on Sunday and I'm driving back to my hometown to meet my boyfriend (pictured on right with me) to do Christmas Eve/day. So here I am.. for 3 full days and we were in a hurry. I didn't refill my travel enzyme container I keep in my purse before leaving mom's house. So I literally left all but 3 lil enzymes at home. So I have 3 pills ( which isn't enough for even 1 snack) and 3 days... So I ration the pills. 1 pill a day and take it with my worst to digest meal. Oh boy. I can tell you- don't skip enzymes... Besides the obvious Bathroom issues, my stomach has been hurting a lot. We are trying to eat easy to digest food, etc. But ugh... However, even though my stomach has been bothering me, I've had a lot of fun with my sister. We have finished our Christmas Shopping, went for lunch, got manicures, and hung at her apartment! Today, is our "finish our tasks" day, she finishes cleaning before heading to mom and dad's for break, and I finish the tutus I'm making Andrew's nieces for Christmas!
Oh, Any other CFers have horrible luck opening their cayston? I seriously slice my fingers/ thumbs a lot!!!
Dear (insert name of person who decided to put cayston powder in a metalic sealed bottle):
I'd prefer it in a vial like the rest of the nebulizers I do, I'm a lil klutsy, and bad with sharp objects. Adding a metal seal to a product where some of the people who have to open them have blood clotting issues, wouldn't be my first choice. (reference: my fingers and thumbs)
But Thank You for the wonderful new meds my lungs enjoy them a lot more than my fingers.
Love.
Me
I can't imagine living off one enzyme a day! I take the same dosage of Zenpep as you and so I can only imagine your pain.
ReplyDeleteAs for Cayston, I have yet to cut myself (knock on wood), but I often break off the metal tab so I can't open the vial unless I try to pry it off with a knife.
If I used a knife I'd cut my finger off. lol. I thought about tweezers, but I'm too lazy to walk into the other room to get them. And yeah, its been interesting without enzymes. Tomorrow I will get them though! YAY!
DeleteMy daughter is at her first year of college and before she heads out she asked me to pop her cayston vials b/c sometimes they aren't "pre-started"! I literally have to take a sharp knife to pry them partially open so it will be easier for her when she's at school. Seems to me the pharm company would have figured this out by now - maybe nobody has made them aware of this, hmmm. I think we are barking up the wrong tree (ever hear that expression?). I enjoy reading your blog and thank you for that. I've tried to get my daughter to read some blogs, just so she can see other young ladies who are handling their lives with CF, but I think with college, keeping up with CF treatments and yes, her social life she hasn't had time. I just want her to get through the next 4 years healthy! 1 semester down, so far so good :)
ReplyDeleteI think I might write to the company. I have cut my self more than once on them. I'm glad you like my blog, thanks for reading! I didn't read blogs or know much about many other CFers until mid 20s. School, CF, and Social Life kept me too busy too! I didn't start blogging until after I already had my Bach. degree. And btw if pre-pop her Cayston for her, obviously you are a caring mom (my mom would do it too if I asked) and that is key to her staying healthy. Supportive Parents make a huge difference. So thankyou for being a great mother, (like mine)- we CFers need the extra help sometimes! :-) I'm sure she will do great! Thanks for sharing!
DeleteHi Cheriz! Just discovered your blog and am eating up your posts--I have similiar issues as you do with the weight gain, and even though my PFTs aren't as awesome as yours I working hard to do a 5K this year and hold steady where I am!
ReplyDeleteAnyhoo, yes I have trouble with the Cayston sometimes with my tiny fingers. I've found twisting the metal cap (even though sometimes it's really hard to do) will pop open the ones that missed getting pre-cut open, so you can peel off the metal part. But even then, yes I do struggle with it sometimes. It's inconvenient for sure!
Hello!
ReplyDeleteWelcome, glad you found my blog! Congrats on working towards a 5K! It was tough when I first started to walk/jog. I was around 38% lung function. But I did it. More walking than jogging, but I worked myself up. I still can't full out jog a mile, but I finished the 5k walk/jogging. I think it did a lot for my lung function, considering I ended up at 60%.
Its always nice to meet another CFer with similar problems, helps make us (or me,anyway) a little less weird..LOL. And yeah, Cayston is flippin tough. I'll try twisting it next time.Thanks! Thanks for reading and can't wait to get to know you! Welcome :-)