Share Facebook


 
05-19-2014, 10:50 AM   #31
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Oh yuck, I'm sorry to hear the high-fiber diet just caused you more trouble. I hope you can get a GI appointment sooner. You mentioned possibly doing bowel rest - are you talking about something like EN? I haven't done EN myself, but I've heard good things, so I hope it works well if that's the route you go. I hope it gives you enough energy to continue working out too!

That's really weird about medication changing your hair color! I've heard that sometimes after chemotherapy, people's hair will grow back a different color/texture (like it'll be curly when it was straight before), but I've never heard of other medications causing hair color changes. That's so odd! I hope your hair goes back to normal once you wean yourself off of that med!

I hope you're feeling better and were able to work out, too. Hang in there!
05-19-2014, 05:12 PM   #32
CrohnsChicago
Super Moderator
 
CrohnsChicago's Avatar
 
Join Date: Aug 2012
Location: Chicago, Illinois

My Support Groups:
Aren't sitz baths the best? lol

I feel for you I struggle with high-fiber diets myself. I just hate the way it makes me feel until I am able to pass. Bleeding is definitely no good though . I hope you can get it all sorted out.

Do you ever find that light exercise helps with your movements. Sometimes after I am done working out it triggers the need for a bowel movement.

I had no clue Effexor changes your hair color! Really freaky. I've never had an anti-depressant or anti-anxiety med do that before nor had I heard of it.

Wishing you improved health. Hope you can get back on track soon!
__________________
Crohn's-Colitis May 2012
Current Meds:
6-MP (100mg) / Asacol (4800mg)
Past Meds:
Prednisone/ Entocort / Flagyl
Current Supplements:
B12 Shot (1cc/mo) / Multivitamin / Vitamin D (1000iu) / Calcium (1200mg) / Omega 3 Fish Oil (4800mg)
Additional Info:
Anemia/Borderline Anemia - whole life
Generalized Anxiety Disorder - 2009 (Cognitive Behavioral Therapy, mindfulness meditation)

05-19-2014, 05:23 PM   #33
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
@Cat: Yeah, and now without the metamucil I'm stuck straining again. Can't win! I need to up my Miralax a little bit, I guess. RE: Bowel rest, though: I think I might have to do EN for a bit, yeah. I feel like I have something internally around the sphincter/rectum on the left side that keeps getting aggravated and cut, and I think that's the only way to let whatever it is... heal. I just worry that if then I switched back from EN, it would just happen again because my constipation problem is still unresolved.

@CC: I actually haven't found that exercise makes a difference at all, which is frustrating because I was hoping it would. I just find I go consistently around 3 - 5PM in the afternoon regardless of what I'm doing, sometimes earlier. It seems more dependent on when I eat than anything else, which makes sense.

And yeah! If you know anyone considering Effexor, definitely warn them. I thought it was this nice, subtle medication but it's actually pretty alarming and supposedly people can get hooked for life on it, too. Very happy to be stopping it.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-19-2014, 05:29 PM   #34
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
I actually worked out today! Sometimes I avoid checking the fitness threads out of guilt until I feel like I have something to contribute, too. Which kind of works as motivation!

I actually had my SO and my mother work out with me today, which was really nice. I was on the treadmill for awhile, doing speedwalking. I need to start doing intervals where I run a little bit, too, but I'm pretty intimidated by it. I might try adding that in next time. Also went on the elliptical briefly, then switched to weights and doing lots of core-strength exercises and stretches because I have absolutely none. We'll see how sore I am tomorrow/tonight. It felt good getting back to it, though!

Now going to ruin it by devouring some delicious ribs tonight.

I also forgot about Victoria Day today (I am a terrible Canadian) so I couldn't call my doctors today or hassle my Humira provider. Tomorrow! I also get my sleep study results (finally) this Thursday, which I'm pretty interested in. Before actually doing my sleep they figured from my interviews/forms that I most likely had insomnia, delayed sleep phase disorder, and restless legs syndrome. Time to get that confirmed, and possibly get better treatment for it!
05-20-2014, 12:18 PM   #35
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
I'm glad to hear you were able to work out! How sore are you feeling today? This may just be me and I may be totally weird, but I actually kind of like feeling sore after a workout. It's hard to describe, but it's like a "good" kind of hurt as opposed to the "bad" kind of hurt that my illnesses inflict upon me? Like, it feels healthy rather than unhealthy if that makes sense. As though I'm healing rather than getting sicker. I'm probably just weird though!

And don't worry too much about eating ribs after your workout - it is good to eat something high in protein after a workout, as that helps you build muscle. And if you're not trying to lose weight but rather just get fitter/healthier/more muscle mass/etc, then it's not such a big deal. It is true that even having a small snack after a workout is likely to negate whatever calories you burned during your workout - but like I said, if you're not trying to lose weight then it's not a big deal.

Good luck with your sleep study results! I've never had a sleep study, but I've read about them a little bit - it seems to me that if you already have trouble sleeping in your own bed, then surely sleeping in a new place while hooked up to a zillion wires and sensors would just make sleeping that much more difficult - how do they possibly get reliable results while factoring in the fact that you're not in your own bed and you are hooked up to stuff and probably not particularly comfortable? I can barely sleep in hotels or in my in-laws' guest bedroom, I think I wouldn't sleep a wink if I did a sleep study. But anyway, I hope you get some usable results from your sleep study and can treat whatever issues they confirm!
05-20-2014, 01:00 PM   #36
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
I feel the same way about soreness after a workout! It makes me feel like I did something right and take it as a sign of improvement and it makes me feel really good about myself. I'm super sore today, especially my poor abdomen! I did tons of core stretches yesterday and I'm really feeling it. I can also feel my upper arms a fair bit too from the push-ups and weights I did. I really want to get some strength in my arms because I can't even open a water bottle on my own!

And oh gosh, if I hadn't taken terrible pictures I would post the ones I have of myself all wired up. I had electrodes all glued to my scalp through my hair (which made it feel and smell greasy when it wasn't), an oxygen line for my nose which was to detect my breathing but blocked it in the process, and also more electrodes on my legs and jaw to detect RLS and teeth grinding. Not to mention being hooked up to a circuit board and trying not to pull out the wires! It took me foreeeever to fall asleep, since that's already my problem, and then every time I wanted to go to the washroom I had to ask for a technician to temporarily unhook me. It was exhausting, but I'm glad I did it!
05-20-2014, 03:43 PM   #37
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
You'll get arm strength as long as you keep working at it! I was the same way when I first started working out, I had to have my hubby open jars every time. It took awhile, but I have some nice arm muscles now, and if I find myself struggling with a jar, I don't let him come in to help. I'm like, I got this. So you can totally get some nice arm strength too! Sounds like a very good start so far.
05-22-2014, 10:05 PM   #38
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
Thanks, Cat! That gives me some hope. Yesterday I successfully managed to open a water bottle on my own and my SO was astounded.

Also, I think I need someone to yell at me if I don't post tomorrow about working out! I was so sore from the core exercises I did on Monday that I was still excruciatingly sore yesterday! It even hurt to laugh. Today it's finally faded so I think I'll be able to do some exercise tomorrow. And I think I really need to, because I can see that I'm gaining weight. I need to cut down my portion sizes and stop eating the same junk my SO eats!

I also got my sleep study results today! They were really interesting, actually. It's been confirmed that I absolutely do have Restless Legs Syndrome and Periodic Limb Movement Disorder, and apparently it was much worse than I thought. I constantly move my legs during the day and really can't stop it, and they're so much worse when I'm sitting and laying down, especially when trying to sleep. But apparently it happens in my sleep, too, which I didn't know for sure. The specialist said that according to my test results, my legs moved on average 44 times an hour, and woke me up 22 times an hour! They were just brief wakings, so I don't remember them, but he says that's why I feel so exhausted all the time, and that I have what's called "fragmented" sleep because of it.

I also definitely have Delayed Sleep Phase Disorder, but the diagnostic tests for it aren't covered by our province's health care. Sleep stuff usually isn't, unfortunately. But it took over an hour, close to two to fall asleep, and even then I was constantly waking up. Apparently from 11PM - 1PM I spent 40% of my time awake. I only started entering a deeper sleep around 3/4AM, and only briefly hit REM around 8/9AM and it didn't last very long. So I basically don't get deep sleep at all and it was mostly all light and not restful. Not to mention much later than a normal persons'.

We're trying to treat the RLS first with Pramipexole, which is also used for Parkinson's. I'm still waiting to get it filled since I have a small local pharmacy that delivers. The specialist also wanted me to go back on my previous sleep medication (zopiclone) to help me get deeper sleeps, but it doesn't help with sleep-onset. I'm hoping the RLS medication will help with that, and then we can try the zopiclone again.

So, interesting things that can hopefully be treated!
05-23-2014, 04:47 PM   #39
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
I probably won't be around the forum much this weekend, so I'll yell at you as a pre-emptive measure - go work out and then tell us about it!

Wow, that is definitely a strong result from your sleep study! 44 leg movements and 22 episodes of waking up per hour?? Goodness, if they can treat that then hopefully you'll feel tons better. I had a similar shocking result from a test for my GERD - I knew I had GERD but didn't know how bad it was, so they stuck an NG tube in me for 24 hours and tested how often I was refluxing, how long each episode was, how high in my throat the reflux got, etc. The results were shocking - I had 48 separate episodes of reflux in 24 hours, and the longest episode was over 5 hours long! About half the episodes reached the top of my throat. There was other stuff in the results that I'm forgetting. But anyway, yeah, I can relate to having an issue but not knowing how bad it is, and then being totally shocked when I find out that it's really really bad! My GERD is better controlled now (it's not perfect but not nearly as hideous as it was), so hopefully your RLS and other sleep issues can be treated better now that you know what's going on, too. Good luck with the new med!
05-23-2014, 05:15 PM   #40
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
Think I'm going to have to do a late-night workout at this rate! I was going to go downstairs and then realized all my stuff was in the wash.

And oh gosh, Cat! Five hours!! That's incredible in the worst way. I'm so glad you've gotten it better controlled now! I get to pick up my new medication tomorrow, so here's hoping it helps!
05-23-2014, 05:19 PM   #41
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
Also: small update for soon-to-be obvious reasons:



I was getting numbness in my left thumb recently when I went on my phone, and last night I started getting that plus pain that radiated down my tendon and had to stop... everything, kind of. Saw the doctor and she checked it out and said I provoked tendinitis in my left hand and told me to wear a brace. Borrowed one from my grandmother and I am now going to have to exile myself from the forum for a little!

Moral of the story: don't play too many video games like I did. (Fire Emblem on my 3DS and checking Tapatalk on my iPhone are the suspected culprits.)
05-27-2014, 10:42 AM   #42
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Oh no, Ocean! How long do you have to wear the brace for? Are you still able to exercise with it on? I hope it heals up soon. Hang in there!
06-01-2014, 05:47 PM   #43
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
Just as long as the pain lasted! I ended up wearing it on-and-off for a bit over a week, and now I only put it on again if I'm playing games or doing something intensive with my hands. I'm just lucky it wasn't my dominant hand.

I also finally worked out again! I was awful and lazy the last week, and need to get better about that. Definitely notice the difference in my workouts already -- I don't have quite the same stamina, though I'll get back to that again soon. Went on the treadmill for awhile today and started to intersperse speed-walking and running a bit, which was exhausting but a good start. Hopefully I can increase the frequency of running and gradually get used to it. Did some push-ups, jumping jacks, and reverse crunches. My core definitely feels a little stronger since I kept up with core stretches during the last week, at least. Now to just get myself to go down to the gym again in two days from now.

I had an incident the other night. That incident was trying prune juice, and it was a horrible mistake. It affected me as badly as colonoscopy prep and basically affected me for close to 24 hours, and it was awful. Please, love yourselves. Don't make the mistake I did. Don't drink prune juice. (It also tastes and looks disgusting.)

Also, I tried the Pramipexole for my RLS and it failed me miserably. It actually made my RLS about a thousand times worse, and made it be accompanied with pain which I don't normally experience. The result was insomnia, so it basically backfired in the worst way possible. Stopped taking it since. Upside: my normal RLS now seems comparatively manageable! I am going to see my neurologist, soon, though. I have an appointment for the 17th, which I'm looking forward to for both my RLS and my migraines.
06-02-2014, 03:09 PM   #44
CrohnsChicago
Super Moderator
 
CrohnsChicago's Avatar
 
Join Date: Aug 2012
Location: Chicago, Illinois

My Support Groups:
Oh my! All of that for video games? I hope you are starting to feel some relief now that you are giving your hands/wrists a break.

Congrats to you for working out even with the brace on. I know you were having trouble getting your workouts going for a little bit there. Glad things are turning around

I didn't even know what was out there to treat RLS. I get RLS pretty bad when on steroids. Any other time it happens and I'm not on meds I know it's triggered by anxiety episodes and I just try to meditate/breathe it out or hit the xanax as a final effort. I personally would take RLS over insomnia for sure. Insomnia has much more harmful effects on the body. I hope the upcoming appointment is helpful to you.
06-02-2014, 03:25 PM   #45
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
My "giving my hands a break" was more trying not to use my left hand, and stubbornly trying to play video games with just my right. But yes, my left hand is feeling almost back to normal now!

And honestly, I don't think there's too many things out there to effectively treat RLS. It's either that it's a Parkinson's medication, or it's something like clonazepam or in the same vein as Xanax. Mine's active all day, which isn't so bad as long as I'm not trying to sleep -- but at night it's pretty miserable and causes insomnia. Clonazepam kind of works for it, but it would make me feel sedated and groggy and awful the next day and wasn't worth it at all. Plus: I built up a resistance to it so quickly it was kind of dangerous to continue! It does get worse with anxiety for me too, though. And thank you!
06-03-2014, 09:03 AM   #46
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
I know it's possible to play video games with just one hand - I have a friend who has a prosthetic hand, and when we were much younger, she got a gameboy and played it all the time. She would just sort of prop it up with her prosthesis and use her good hand to play. She is amazing, she can tie her shoes with one hand, put her hair in a ponytail with one hand, etc. When I first became friends with her, out of curiosity I tried doing those things with one hand but I just couldn't do much of anything.

Ocean, how do you know that your RLS is active during the day? I ask because I'm fidgety most of the day, like I move my legs a lot but I never thought about it being RLS. Sometimes I do get jolted awake and/or have to move my legs when I sleep, but not super frequently (maybe a few times a week?). So I don't know, I'm probably just fidgety?

Good luck with getting to the gym 2x per week - you can do it!
06-05-2014, 12:35 AM   #47
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
Oh gosh! I remember I had a similar experience, except it was that in one of my classes we had a student who was ambidextrous. I remember all of us trying to teach ourselves to use our non-dominant hands... to some extent, it worked, but definitely needs a bit more practice. Has your friend seen some of the amazing controller mods people have made? I can't remember the name of the person who made them, but there was someone who had a professor with one hand and they made a one-handed controller just for them!

And oh gosh, for me it's pretty obvious that my RLS is active. I'm constantly moving my legs, jogging them on the spot, bouncing them in place. I used to just attribute it to my anxiety until my anxiety went away and my leg movements didn't -- plus it's in my family. When I've looked it up it really varies, though. It seems to wax and wane for some people -- it's active for months at a time and then it won't be, but mine never really goes away.

Getting jolted awake may be an indicator of Periodic Limb Movement Disorder, which 80% of people with RLS have (but not all people with PLMD have RLS), and I do too. It specifically only happens while asleep. So that might be something you have! You'll have to ask your hubby to keep an eye out for it. It could even be something as unnoticeable as twitching, though. For a diagnosis they say it usually has to be at least 30 movements a night, and wakings are common for people that have it, though they're not always remembered.

Could also be that you're just fidgety, though. For your sake I hope it is.
06-05-2014, 12:44 AM   #48
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
And I did actually make it to the gym a second time this week! I went on Tuesday, and the gym was thankfully empty again. I ended up blasting Welcome To Night Vale from my iPhone to keep me company, which was odd if not interesting material to work out to.

I went on the treadmill but didn't last as long as normal, but it was because I was trying to get myself to run a bit more! I did 1 1/2 minutes of speedwalking (4mph) and then would do 30 seconds of running, and would continue cycling like that. I know it's going to take awhile, but I'm determined to get myself used to running! Otherwise I did my regular stretches: push-ups, lunges (need to do more of those), reverse crunches... My core was still so sore from Sunday that I couldn't do the crunches for long, though. Still managed quite a few of them!

Also tried to focus on some weights for a bit, too. I'm pretty wimpy still so I was working with the 5 pound weights and then switched up to the 8 pound ones after. I think I'm going to continue trying to build myself up to higher weights that way. I'm feeling it in my arms today, though, so I did something right!

Also contemplating getting one of those hand grippers to work on my hand strength. My dad has one but I know I can't borrow it from him since he's a work-out nut and uses all his equipment all the time.

Otherwise, I've been trying to focus on my diet. I've been trying not to eat my SO's junky food anymore, and I've stopped buying snacks for myself. I need to find some healthy replacements for during the day, though, because I do still get hungry... I might try and see if I can make myself some gomaae or maybe some bento sides that I can just snack on without feeling guilty. I really, really enjoy Japanese cooking (despite not eating seafood) so I've been trying to hunt down some recipes and try making more of the cuisine myself!
06-05-2014, 10:15 AM   #49
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Yay, I'm glad to hear you had a good workout! Don't worry about being "wimpy" though. Everybody has to start somewhere, just concentrate on yourself and don't worry about labels or stuff like that. As long as you keep going with it, you'll improve your strength. I started out totally "wimpy" too, I had pretty much zero muscle mass and had to build myself up almost totally from scratch.

On that subject, if you still think of yourself as "wimpy", change that around and think of yourself as super-intelligent instead. I read an article in the news recently, the gist of it was that scientists now think that perhaps we evolved to be less strong than the other great apes because the development of our complex brains took metabolic priority over the development of our muscles. So as a species, we're smart but naturally rather wimpy!

I don't know a lot about Japanese cooking, but I imagine that it's fairly limited if you don't do any seafood! Do you do seaweed/nori? And I would imagine you'd use a lot of rice, miso, and tofu - but I can't think what other ingredients would be options for you. Eggs? I'm not much of a cook so it'll be interesting to hear what you come up with!
06-05-2014, 03:52 PM   #50
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
Huh, that's pretty interesting about that article! I guess we're all a bunch of wimps, then. I definitely feel like I've been improving since I started working out, though! Just noticing little things, like opening bottles easier, or not having as much difficulty lifting weights or my own body-weight.

And no, I don't do nori, actually! I've tried it a few times, but even if I pull it off of onigiri I can still taste it and it still bugs me. I wasn't raised with seafood (my grandmother was allergic to it), and even now it's still really off-putting to me. But yes -- lots of rice, miso, tofu, egg... I've been trying to learn how to make more vegetable dishes, to start! I picked up ingredients for gomaae today (green beans to blanch) for a healthy snack and/or side with dinner, as well as some purple sweet potatoes for daigaku imo, which I made the other day and it was delicious. I had it once years ago at a Japanese restaurant, so I was so excited when I found a recipe for it. It's practically candy, but has the illusion of being healthy!

Honestly, I've only ever really baked before, so this is the first time I'm really getting into cooking! I usually just leave that to my SO. But I'm much more open to trying things than he is (and eating healthier things), and so it's up to me. What I've learned so far is that baking is great training for cooking, though not the other way around. (My poor SO struggles to help me with baking, haha.) I'm slowly learning how to handle meat, though. I honestly had no idea how to work with it or what cuts were good outside of what a recipe told me, so I'm learning.
06-05-2014, 04:02 PM   #51
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
Worked out today again! I'm trying to keep up with a schedule of working out every other day, and now that I'm falling back into the habit it feels easier. Tried to extend my treadmill time by doing ten minutes of some good speed-walking, then started to integrate my speed-walk/run intervals again. Running is slowly feeling a little better, a little more natural, but I definitely can't keep it up too long!

I went on the elliptical for a little bit after that -- I need to figure out how to adjust the stupid seat on the bike we have in our gym so I can use that, too. It's much too high for me -- even if I stand I still bump against it which is uncomfortable. So I'll look into that next time.

Did jumping jacks, hamstring stretches, lunges, push-ups and more reverse crunches. I need to try doing normal crunches, but really need someone to hold my toes! Thinking of grabbing one of the heavier weights next time and putting those over my feet so I can try it.

I finished up the workout with some weights -- did more of the 5-pound ones which are starting to feel weightless, and used the 8-pound weights for a bit. I dared to try the 12-pound ones but they're definitely still out of my league for a little while, but still tried to do some reps with them. One day!

All-in-all: the workout felt really good today! I caught up on Welcome To Night Vale, so I'm going to have to find some more podcast material soon. I'm actually going to one of their live-shows when they're here in my city soon, which I'm super excited about.

Also! I applied for a job, which I'm still really giddy about. My last one was before I really got sick, and was at a magazine where I helped edit and fact-check articles. This job I applied for is at a local publishing house! Even on its website it's charmingly quirky, and sounds like it would be a perfect environment for me. There's a few things they asked for that I'm not quite qualified for, but oh man if they take me up on an interview and hire me I will definitely try my absolute best to learn them. The position is basically helping out the publisher and editors and doing some administrative work, so it sounds pretty ideal for me!
06-06-2014, 09:19 AM   #52
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
That's fantastic that you're working out every other day! That is quite a lot to start off with though, so if you feel burned out or too sore or whatever, don't feel bad about taking an extra rest day here and there. It sounds like things are going well though so I applaud your efforts! What are your fitness goals right now, are you going to train to run a race or are you just generally trying to get stronger and healthier? (Or both, or something else?)

Good luck with the potential job! That sounds awesome and it sounds like you have experience in that field, so hopefully you're a shoo-in to get the job.

That sweet potato recipe you posted, in the photo it looks like the potatoes have skins on them and they have sesame seeds on top? Do you modify the recipe to remove the skins & seeds, or are those okay for you? (I cannot do skins nor seeds, that picture just looked like pain to me!) Other than the skins & seeds though, it sounds yummy.
06-06-2014, 12:49 PM   #53
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
Thank you! And my current fitness goals are to lose a bit of weight, and tone up my upper body and maybe my legs. Also just general health! There's actually the Gutsy Walk for IBD tomorrow that I wanted to participate in with my mother, though that's up in the air at the moment because she's unsure of her schedule.

For the sweet potato recipe: the skins are optional, and when I made it I peeled them all off since my body doesn't like those very much. The seeds didn't bother me so I did those, but you make a gomashio with them which is essentially toasting them in a bit of salt water so they're little bursts of salt when you eat. You can probably substitute for a sea salt very easily! And it really is yummy -- you could honestly eat it as a dessert, or just a great snack.
06-06-2014, 01:21 PM   #54
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
How much weight are you looking to lose? I'm somewhat similar - Entocort is making me HUNGRY and I've gained a few lbs and my stomach wasn't flat to begin with (I swear, I totally have 6-pack abs underneath this little layer of flab!). So I would like to lose a bit of weight as well, but I'm thinking in my case it probably won't feasibly happen until I'm off the Entocort fully. I'm on 3 mg now and the closer I get to remission, the better my appetite gets. Which is good because it means I'm getting healthy, but not so good for my waistline!

You probably already know this, but I've heard a statistic that weight loss is approximately 70% diet and 30% exercise - so for that goal, it's good that you're looking into healthy snacks as diet will play a bigger role. Getting into shape will certainly help too (muscle has a higher metabolic burn rate than fat) but diet is really the key.

I might try making those sweet potato snacks - I have sea salt at home, and I'm often low in potassium so I try to eat sweet potatoes anyway. It's good to know it can be made without the skins & seeds! Thanks!
06-06-2014, 02:08 PM   #55
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
Post-flare my weight seemed to settle and stick at an underweight 114 pounds; now I'm around 135, which I don't like. Ideally I'd like to get back to the 125 range. It was stable at 114 for almost a year, and then in the last month I put weight on all at once! And oh gosh, how long are most people on entocort? It seems like it has a very slow taper.

And yeah, before I pretty much controlled my weight purely with portion control! Now I'm doing that plus trying to eat healthier, and the exercise. So hoping I'll be successful.

Let me know if you make it! Also a tip is to try and use purple sweet potatoes if you can, because the regular ones can get a bit mushy since they have more water.
06-06-2014, 02:10 PM   #56
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
So, somewhat troubling development: since Monday I've been getting really odd tingling in my arms and sometimes when I move my head, but it isn't persistent. The best way I can describe it is like a burst of white noise. It's gotten much worse today -- now it's with every movement I make with my body, and it may be peripheral neuropathy related to hypothyroid, which I've been suspecting for some time (especially since autoimmune thyroid issues are something my grandmother has). Currently waiting for my GP to call me back about it because I'm pretty worried about it.
06-06-2014, 02:52 PM   #57
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Oh gosh, I hope your GP can figure out what this new symptom is and treat it! It sounds worrying and I hope it's nothing major and easily treatable. Hang in there! Keep me posted on what your GP says, worried for you!

As for the weight thing - how tall are you? I'm 5'8" and I'm currently at 139, so within the healthy BMI range but still a bit high for me. I'm normally in the low/mid 130s so I've just put on a few lbs, nothing huge, but it's a bit embarassing when my Wii Fit is saying things like, "You gained 1.1 lbs since last week! Now try to think about the cause of your weight gain." And I'm yelling at the stupid thing, it's Entocort!

I think the typical Entocort taper is 12 weeks - 6 weeks at 9 mg, and then 6 weeks at 6 mg, then done (it is safe to go from 6 mg to nothing, although some doctors will have the patient take a 3 mg dose for awhile too). My experience has been different, my GI kind of tailors my tapers to my specific needs. When I was on it a few years ago, I spent 7 months total on it - 3 months at 9 mg and 4 months at 6 mg. It took that long to get me into remission. This time around, I started taking it in February I think, so it's been roughly 4 months so far. I started at a low dose this time since this flare has been milder, I started at 3 mg to see if that'd do the trick. After a couple months I was still having some symptoms, so I got my dose bumped up to 6 mg and I stayed at that dose for close to 2 months. I've just recently tapered back down to 3 mg without trouble and I'm feeling pretty well these days, so hopefully just a short time longer on 3 mg and then I can stop taking the icky stuff. I do have to say, I only got the recurrent hideous migraines when I was on 6 mg - now that I'm back on 3 mg, my head feels better too. So it's not so bad, it's just that I'm hungry all the time lately!

I'm going to look for purple sweet potatoes at the farmer's market, thanks for that tip! I'm sure I've bought purple potatoes there in the past so I'm hopeful that I can find purple sweet potatoes too.
06-07-2014, 06:08 PM   #58
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
GP had no idea what it was, but I've figured it out. I stopped my antidepressant (Effexor) on Thursday, and I looked it up and other people online were all complaining about "electric shock" sensations throughout their body. Fish oil supplements apparently help with it, but it's also a bit better today. I also had a freak side-effect where it turned my red hair to brown, but it's slowly coming back in red. Basically: don't let anyone ever take Effexor. It is a terrible, terrible medication.

For height: I'm 5'5"! My doctor says that 130 is apparently the "ideal" for my height, but I always take that with a grain of salt. I don't particularly like how this weight looks on me. I'm an hourglass naturally, but I have a super long torso and then average-length legs -- so when I gain weight I really notice it in my thighs, which is mostly what's bugging me right now.

And oh gosh! I would be yelling at the Wii Fit too if I were you. I was actually avoiding logging my weight altogether with the Fitbit. Apparently some of my weight gain may have been caused by the Effexor, though? Or at least that's what I'm hoping. Right now I'm not sure what to think of my weight because I've always heard muscle weighs more than fat? (And I am noticing that I'm getting muscle in my arms! Very excited.)

Oh wow! That's so long in comparison to being on prednisone, though it being milder must balance that out. (Minus the migraines, anyway.) I'm glad to hear that they're getting better, though! Hopefully the hunger will start to subside, too.
06-07-2014, 06:17 PM   #59
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
Worked out today again despite weird tingling! It wasn't anything too notable; did my regular stretches as well as going on the treadmill and elliptical. I also finally figured out how to adjust the bike seat, so I was on there for awhile as well! I don't last on there too long, so I'm thinking I might try that to start the next time I work out when I'm not as tired.

5-pound weights really are feeling like nothing now -- noticed there's some seven-pounders that I hadn't noticed before that look like they're from a different set, so may try those next time in addition to the 8-pound ones. I still really can't deal with the 12-pound weights! I wish there was an in-between in our gym but no such luck.

Noticed that there was a sauna area (two of them!) that I'd never been to before -- asked Mom about it and she said that they're actually going to get rid of the saunas, make the change rooms smaller and then try to make the gym areas themselves bigger if not join them into one big gym, which sounds cool. That way we'd hopefully get some more equipment, too!

Definitely noticing that my stamina is getting better... when I was out the other day I ended up jogging/running for a bit without any problems, which would have really winded me before. It's nice to just notice little improvements.

I have an appointment on Monday with my GI -- just a regular thing. He's likely going to talk about getting me on Methotrexate, since he had mentioned that previously. I absolutely want to make sure that my fistula stays closed, so if he thinks it will help with that on top of my Humira I'll gladly go on it (with folic acid), but I wanted to ask him about oral vs injection and which one is likely to have less side-effects. I really don't want to lose my hair again like I did with Imuran!

Also wanted to ask him about my continued constipation problems and about any further testing for that, so we'll see what he says. I just want to get it solved already!
06-07-2014, 09:33 PM   #60
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Yeah, my GI says it's safe to be on Entocort for up to 9 months in his opinion. Since I'm still technically undiagnosed (it's IBD, just not sure which one!), he feels more comfortable with putting me on Entocort. He said if he put me on pred, he'd only be comfortable with me being on it for a few weeks, but with Entocort a few months is no problem.

I'm glad you figured out the cause of the tingling! That sounds like a horrible medication! I'm glad that your hair is recovering, too. Oh, and as for hair loss - when I was first on Entocort a few years ago, my hair started falling out and someone on the forum recommended I try biotin. It's a b-vitamin and I was told that I need to take at least 3,000 mcg daily to have an effect on hair loss. I found pills that were 5,000 mcg, and they worked. I've been taking biotin ever since, and no hair loss at all on this round of Entocort. So just something to look into if you experience hair loss again from medication! It doesn't work for everyone, but definitely worth a try at least.

Yes, muscle weighs more than fat so the number on the scale is not as important as how you look & feel! When I was first ill, I had lost about 20 lbs over the course of a year. Then I was on Entocort the first time, and I gained back like 25 lbs and it all came back as icky fat and much of it settled around my midsection. Once I was off Entocort, my weight settled at around 135 which is normal for me, but I felt flabby. Then I started working out, and gradually the flab shifted into muscle. My weight in lbs didn't change though, although I could tell in the mirror that my body looked far different and I liked it much better after I had been working out and put on muscle. So, your weight might not shift a whole lot, but I promise, what you see in the mirror will!

It sounds like you're already making some good improvements in the gym, with having more stamina and moving up to heavier weights. You'll get up to those 12 lb weights, just keep at it! I remember the stationary bike being difficult when I first started out, too. The lowest level of resistance on the bike seemed tough and I could only ride it for like 2 minutes before I got totally winded. Now I can ride for an hour on a hill program - it's tough, but it doesn't feel impossible. So just keep working at it and you'll get there, with the heavier weights and the bike and whatever else you want to do!
Reply

Thread Tools


All times are GMT -5. The time now is 06:23 AM.
Copyright 2006-2017 Crohnsforum.com