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03-02-2015, 01:50 PM   #1441
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Update 3/2/15: I didn't go to the gym on Friday as I felt it was better to continue healing. The good news is, I didn't seem to pass any blood on Friday and I started to feel better.

Saturday we went to the shooting range as planned. It was definitely an experience. I got to shoot I think 5 different guns at targets. I was actually pretty good (thanks, Nintendo's Duck Hunt) and even with the hugest gun, the 44 magnum, I hit 5 out of 6 bullseyes on my first try. I am just not a gun person though and I probably won't ever go target shooting again. Guns make me really nervous and the noise is insane. Even with heavy duty ear protection, I was still flinching at every single gun shot sound. So, I'm glad I tried that once so I can say I did it, and I likely won't ever do it again.

Sunday, I felt pretty good, so hubby and I hit the big gym. It had been awhile! And I'm quite sore today! That's a good thing though. I'm happy to finally be getting back into proper workouts. I did everything except for the abdominals machine - tummy still felt a little bit iffy so I decided to avoid working my abdominals for now. I didn't cough at all so it seems I'm finally 100% over the flu! It only took me 2 months, ha ha.

Today it's actually pretty gorgeous outside - we've had one cold spell after another with -20 wind chills being pretty common, so I haven't gotten outside a lot lately. Today though it's a balmy 25 degrees, sunny, and little/no wind. Sounds ideal for ice skating, so I'm going to head out for a skate soon. My legs are still pretty sore from yesterday so I'm not sure how much skating I'll be able to do, but it'll just be nice to get outside without feeling like I'm being tortured from the cold.

Tomorrow, we're supposed to get a bunch of snow. I'll likely end up helping hubby shovel tomorrow evening once it stops. If I don't end up shoveling (if he's already shoveled before I get home), then I'll do weights using my dumbbells at home. I'd like to go to the gym, but I hate driving in snow, so it seems better to skip driving more than I have to and just work out at home instead.
03-02-2015, 04:22 PM   #1442
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Another quick update for today: I only managed 25 mins of ice skating (I was hoping for at least 30). My legs are just too sore & tired after yesterday, and around 25 mins in they apparently had enough and sort of turned into wobbly baby deer legs, so I stopped. Didn't want to fall so I just couldn't make it to 30 mins. On the plus side, the ice was in beautiful condition and the weather was super nice, perfect for skating! Almost too nice in fact - I got quite sweaty! I guess next time I go skating, I need to wear a lighter jacket if it's sunny & pleasant out.

Also, a weird thing - I have a fitbit and it's been really messing up yesterday & today. It's the fitbit "one" so it has an altimeter for tracking how many flights of stairs I've walked up. Yesterday at the gym, I did 10 mins on the arc trainer to warm up. Afterwards, my fitbit said I had walked up 17 flights of stairs (um, nope!). I had assumed it was just an issue with the fitbit not liking the arc trainer, so I didn't pursue troubleshooting yesterday. But today, I looked at my fitbit after I had walked up one flight of stairs - it said zero. Hmm. So I looked at it again after I had walked up a 2nd flight of stairs - and then it said I had done 6 flights of stairs! Again, nope! I glanced at my fitbit once more after my ice skating session, and now it's saying I've done 21 flights of stairs. Nope, nope, nope! I'm going to try rebooting it tonight and see if that fixes the issue. If not, I'm going to have to contact the fitbit people. Lovely, it's only a couple months old (I got it for xmas). Hopefully a reboot will fix the problem - if not, then the altimeter is seriously messed up. The good thing is, since it's still so new, it's surely got to still be under warranty, so if all else fails hopefully I can get a replacement.
03-03-2015, 09:32 AM   #1443
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Hi, I just thought I'd let you know I've been vicariously enjoying exercise by reading your thread a bit today. And to ask if the bleeding has stopped. I also don't pass blood that often, except that I have a stoma, and it's normal for stomas to bleed a bit, so I understand the feeling of trying to work out if bleeding is a problem or not.
03-03-2015, 12:41 PM   #1444
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Thanks UnX! Sometimes I feel like I'm talking to myself in this thread, so it's nice to know that others are reading it. (Not that I'd stop posting in here even if I was really just talking to myself - it's nice to have a diary of my ups & downs when it comes to my fitness endeavors, so I'm going to keep updating this thread regardless.) Yes, the bleeding has fortunately stopped. I had I think 3 days of intermittent bleeding and crampy pain. My abdomen is still a bit tender, but I'm on the mend - haven't had bleeding at all this week and I am feeling better day by day.

Update 3/3/15: My legs are still pretty sore, although not quite as bad as yesterday. I do want to lift weights today, but I think it'll just be an arms day as my arms aren't sore. The big snowstorm we were supposed to get has already sort of fizzled out and the snow seems to already be melting, so I guess I won't be shoveling snow tonight! So, if I can sneak away during a break at work, I'll hit the gym for a bit of arm work. If not, then I'll use my dumbbells at home tonight to work my arms.

Tomorrow, I'm just going to play it by ear. If my legs are feeling better then I might do yoga or the stationary bike. If I'm still feeling sore, then I'll take a rest day. I hope to lift weights again on Thursday. Friday, it's supposed to be really nice weather again so I hope to go ice skating that day. It's actually supposed to be really nice, like almost 40 degrees F (ice melts at 32 and above) so if the outdoor ice rink is open then I hope to go ice skating again. If the ice is melting too much then I will have to figure something else out! It's weird to say I'm hoping the weather doesn't get too warm, but there does seem to be a narrow window of weather where it's warm enough to ice skate outdoors but cool enough that the ice doesn't start melting - so I hope the weather stays within that window.
03-05-2015, 12:39 PM   #1445
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Update 3/5/15: Well, I spoke too soon. The bleeding came back with a vengeance. Tuesday night I had some painful episodes of d. Wednesday morning I woke up, had another painful bowel movement, and when I looked in the toilet it was just red. It was probably the most blood I've ever passed. I took the day off of work and rested. I'm doing somewhat better today - no blood at least, although all is still not well in tummy land. Ugh. Guess I'm going to rest a bit longer just to be safe, so exercise is off the table for a few more days.

I'm fairly depressed about this. I get depressed when I can't exercise, but I also get depressed when I can't pretend that things are okay. With a chronic illness things are pretty much never okay, but I can put on an act for the world and for myself. I tell myself that normal people have diarrhea sometimes, get nauseous sometimes, so it's okay. But, normal people don't have blood in their stool (especially not copious amounts like yesterday) so I can't lie to myself when that happens. As a result, I get really sad and weepy. I cried most of the day yesterday, it was a pathetic pity party of one. I'm feeling less weepy today, guess I just needed to get that out of my system (it helps that I haven't had any bleeding today). I called in sick to work today too just to be safe - I didn't want to have a bleeding episode nor a crying episode at the office. I'll go back to work tomorrow probably, and I'm hoping to get back to exercise next week at some point. Going to stay out of the gym through the weekend at least to hopefully heal up. I see my GI on Monday, so I'm hoping he'll give me something (my bleeding is usually due to hemorrhoids and/or fissures - it's always bright red) like suppositories or enemas to help with that.
03-05-2015, 02:42 PM   #1446
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Sorry to hear that, Cat. Though I think people without IBD get bleeding from haemorrhoids too, so perhaps you're not so far away from the "normal" illness experiences people sometimes go through. But it's still hard when you're going through them far more often or severely than everyone around you seems to be.
Hopefully your doctor will know what to do about it.

Do you enjoy light forms of exercise, like walking? Maybe there's something that can help you by keeping your body moving but without stressing it too much.
03-05-2015, 08:35 PM   #1447
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I'm sorry to hear that you're having those episodes! I think it's a good idea seeing the GI doc though. Something definitely is not right there and needs to be addressed. You will be in my prayers.
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Suffered badly with Crohn's/Ileitis till diagnosis in 1971and received bowel resection surgery to fix resulting obstruction and perforation the spring of that year. Few symptoms displayed since then, but diagnosed with Celiac Disease about 6 years ago.
Take Asacol occasionally for flare-ups (due mostly to antibiotics), supplements like multi-vitamins, Calcium and OPC-3 in Isotonix form.
03-06-2015, 10:17 AM   #1448
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UnX, yes, I sometimes walk with my dog, and I do some gentle yoga as well (I'm not flexible at all so the more complicated/twisty/bendy yoga is beyond my capabilities!). The weather here is supposed to warm up a bit, so I think I will try to take my dog on a walk this weekend. We live right near the dog park anyway so it's convenient, although there aren't bathrooms nearby which is the one big drawback, so I will only go for a walk if I'm confident that I won't have an issue while we're out. But yes, I do walk pretty regularly with my dog.

Jim, thank you. I see my GI on Monday and I'm definitely going to ask him about the recent bleeding episodes and see if he can do anything to help me in that regard (I'm thinking suppositories or enemas). It's been one thing after another lately - last year in August, I came down with Labyrinthitis and I spent about 3 months dealing with horrendous vertigo. Then I got the flu at xmas and the respiratory symptoms lasted about 2 months. Now the bleeding. It's like my body is doing everything it can lately to prevent me from exercising. It gets really frustrating!
03-06-2015, 10:38 AM   #1449
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I guess I should give a little bit of a positive update because it's not all negative (even though it sometimes feels that way). At my work, for doing a good job we sometimes get to pick out a prize. I had helped out at some big meetings that we had recently, and my boss felt that I did a great job with the meetings, so I earned a prize. I picked a fancy expensive name-brand new blender. My old blender was something that I had paid like $30 for at the hardware store, and it was not great quality, so that's exciting to get a new & better one. I make myself a smoothie for breakfast most mornings (crushed ice, almond milk, protein/vitamin powder, cocoa powder, and a banana) but my old blender wasn't that good so as a result I'd usually end up with chunks of un-blended banana still in my smoothie. I just got my new blender in the mail yesterday and it's way better - I tried it out this morning for the first time, and there were no chunks of banana! Everything was smooth and nice. I didn't have much appetite for solid foods this morning, but I was able to drink my smoothie, and it was blended so nicely. So that's a positive, it's nice to get new things that make life slightly easier.
03-09-2015, 09:58 AM   #1450
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Update 3/9/15: I see my GI this afternoon and I've been writing my list of questions & concerns for him (it's pretty much just a paragraph explaining that I've been bleeding, I'd like blood tests to check for anemia etc, and I'd like something along the lines of suppositories or enemas to help stop the bleeding). I'll update again after my appointment with what he says.

It's hard to tell what's setting off the bleeding - if it's food, activity, stress, all of the above, or if it's just random? I think I overdid things activity-wise on Saturday. I decided to walk my dog, but the dog park was still pretty snow-covered so I brought along my snowshoes. Snowshoeing was a bit too much for me, though. I felt very out of breath and exhausted afterwards, like I did too much. I rested for the rest of the day but I did have another bleeding episode after the snowshoeing. Sunday, I made poor food choices (pizza) but no bleeding that day. The weather on Sunday had warmed up quite a bit and most of the snow melted in the dog park, so I walked my dog again but wore my rubber boots instead because the dog park had changed from mostly snow to mostly mud! I had an easier time walking rather than snowshoeing, I didn't feel like I overdid things on Sunday. It was a bit difficult walking in all the mud, and my dog clearly disliked it (she hates water & mud, and she's got very short legs so it's impossible to avoid getting her belly wet & muddy in those conditions). Still, the sun was shining and the weather was warm-ish (almost 50 degrees F) and I'm glad I got outside for a bit.

Today I'm just waiting to see what my GI says, and I'll take it from there. Presuming he gives me something to help get the bleeding under control, I'll see how that goes and then I'll hopefully start to ramp up my exercise from there once I start feeling better. I feel like, if I can just get the bleeding to stop, then I'll be doing pretty well. It's only when I've had episodes with a lot of bleeding that I feel dizzy & light-headed afterwards. If I can just get that to stop, then I'll feel safe enough to go to the gym. I really don't want to push myself to go to the gym, then get dizzy and fall over or pass out while holding a dumbbell or whatever. If I were in the little gym in the basement of my workplace and if I passed out, I'm usually the only person in that gym so that would be a problem - there's no landline phone down there, and my cell phone doesn't get reception in the basement, so there would be no way to get help. If I passed out down there and didn't wake up right away, the lights in that gym are motion-sensitive and turn off after a few minutes if they don't detect motion - so, worst-case scenario, if I had an issue in that gym where I fell/passed out and then the lights turned off, I wouldn't be able to call for help and nobody would find me for awhile. That's a terrifying thought! So I'm going to first see what my GI says, then see how I do on whatever treatment we agree on for the bleeding, then ease back into weight-lifting. I do have a weight bench and some dumbbells at home, so I can work out at home with my hubby keeping an eye on me - that sounds like the safest thing to start with until I get over the light-headedness. I'll start with that and work my way back up to going to the actual gym. Baby steps!
03-09-2015, 03:07 PM   #1451
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Another quick update for today: I just saw my GI and he was a bit concerned about my blood loss. He did a CBC to see if I'm anemic or not. He's going to call me this evening when he gets the results. If I'm anemic then we're going to do a flexi-sig to ascertain the source of the bleeding. Either way, whether I'm anemic or not, he's going to prescribe suppositories to hopefully help heal things up and stop the bleeding. This all sounds good to me and was basically exactly what I wanted so I'm quite satisfied with my appointment. I've never had a flexi-sig before so I'm a bit nervous about the prospect of that (my understanding is, it's just an enema and then they do the scope just to the left colon but it's done in the office with no sedative? If so, eek), but otherwise I'm happy. I'll update again once my GI calls with the results of my bloodwork. In the meantime, I'm going to rest.
03-10-2015, 09:15 AM   #1452
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Update 3/10/15: My GI called me last night and he said the results of my bloodwork were pretty good. My CBC results were a bit lower than my usual, but still within the normal range, so I'm not considered to be anemic. That's good! My GI has prescribed hydrocortisone suppositories. I've taken them before and I'm not a huge fan of them - my main issue is, the instructions say to insert the suppository just before you go to bed. That way, it can work its magic on you all night. The issue I have with that is, it starts working right away including the side effects - taking a steroid just before bed is a surefire way to lay awake half the night. Ugh. It's like a battle between the steroid and the amitriptyline, asleep or awake, who is going to win?? Fortunately I think I only laid awake for about an hour last night, not too bad. (I had some left over from last time so I just used one of those last night and will pick up my new prescription today.)

So, I'm back on steroids, and I haven't really lost the weight from when I was on Entocort yet. My usual healthy weight is around 135 lbs, and I'm currently just above 140, so I don't have a lot to lose, but I'm afraid I'm going to gain even more now that I'm on steroid suppositories. Last time I was on these suppositories, I was on them for 6 weeks, and I gained 6 lbs, so about 1 lb a week. So, I'm just going to try to keep a super close eye on things and try to cut out as much junk food and extra calories as I can. I am thinking a semi-liquid diet to start out with isn't a bad idea either, so today I'm trying a smoothie (crushed ice, almond milk, protein/vitamin powder, cocoa powder, and a banana) for both breakfast and lunch. Dinner will be baked fish (and I'm skipping the tartar sauce). I don't expect to lose weight while on steroid treatment, but if I could just not gain during this time, that'd be nice. So that's my goal, to maintain.

I had a bit more blood in my stool last night and things in my tummy still feel pretty unsettled, so I'm still on a short hiatus from going to the gym. Hopefully once the steroids start healing things up, I'll be able to get back to working out properly.
03-11-2015, 02:33 PM   #1453
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When I'm on prednisone, I just up my amitriptyline dose to cancel out the insomnia. Amitriptyline will knock you out whatever steroids you're on if you take enough of it. Though I do have quite a liberal attitude to medication dosages, so I should probably add to check with your doctor first, but the maximum safe amount of amitriptyline is 300mg, so if you're on less than that it may be possible to have more to help you sleep, if you can tolerate any side effects.

I'm sure you know already that you can gain a bit of weight on steroids from water retention, but that's minor and temporary. Anything else is due to increased appetite, so if you keep eating the same, steroids can't make you gain. But given your current weight and attitude towards exercise, I can't imagine weight gain is something you need to worry much about! It'll all even out when you're feeling better.

It's a while since I had a flexible sigmoidoscopy (it's a while since I had a colon!) but if I remember correctly, there was no enema or prep at all (different doctors may have different preparation requirements, but I think I'd remember if I'd had an enema - I remember every time I have had to have an enema!), they're done in the office with no sedation. They feel pretty much like having a digital rectal exam - if you're used to suppositories, it's probably no more uncomfortable than that, the discomfort just lasts a bit longer, and it really is better if you relax and breathe. It might hurt if you've got problems in that part of the bowel so that anything touching is painful, otherwise it shouldn't be too bad.

Last edited by UnXmas; 03-11-2015 at 02:51 PM.
03-11-2015, 05:08 PM   #1454
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I unfortunately don't really have the option of upping my amitriptyline dose. The dose I'm on, 25 mg, is apparently the ideal dose for me for preventing migraines. At one point my GI tried upping my dose, but even at 40 mg the migraines were back within a week or so. The primary reason I'm on ami is because of the migraines - it helping me sleep is lovely but is secondary to that. So I'm pretty much stuck at 25 mg because I'm more miserable with migraines than I am with lack of sleep.

The good news is, I zonked out to sleep last night in spite of the steroid suppository. Slept like a log and feel pretty good today. Guts feel more settled and no blood in the stool so far today (although usually that's been happening in the evenings and it's 4:45 PM here right now so I may still have blood in my stool at some point this evening). So far so good, I'm feeling better today than I have in a bit. I think the steroids are helping.

My GI specifically mentioned enemas when he said we might do a flexi-sig - he didn't even say enema, he said "we'll have you do some enemas" as in plural, so I guess that means I'll have to do several enemas beforehand if I go that route. And honestly, with the bleeding lately I have been having some anal pain (getting the suppository in last night was quite painful, I nearly cried out loud as I was putting it in). So I am expecting the flexi sig to be painful, but it's not like I haven't had things in my backside (colonoscopy scopes, suppositories, an anuscope) in the past and I'm not super anxious about it. Not looking forward to the prospect of it, but not losing sleep over the thought of it either. And hey, a bowel test where I don't have to do prep or drink contrast is a winner in my book!

Oh, and yeah, I honestly am a bit concerned about weight gain on the suppositories. I was only ever on pred for very short periods of time (like 5 days at a time) so I never gained weight from that. Entocort I tend to just gain a little extra weight, I think I ended up with about 6 extra lbs total from being on it for 8ish months. But these hydrocortisone suppositories, the one other time I was on them I didn't change my eating habits and I kept exercising the whole time, but even so I gained 1 lb each week I was on it (6 lbs in 6 weeks). True, that weight did come off rather easily and probably was just fluid retention, but still, it seemed extreme compared to gaining less than 1 lb per month on Entocort. I don't want to head down that 1 lb per week road again so I'm being a bit pre-emptive and trying to cut a few calories just to be sure. I actually still haven't lost that extra bit of Entocort weight from when I was on it in 2014, so I have a few pairs of pants that fit a bit tight already and I don't want that situation to get worse. (I was on Entocort from Feb thru Oct 2014 and gained 2 lbs during that time, and I actually gained about 4 lbs right after coming off of Entocort, I was exercising and trying to get back to my usual weight, but then I got the flu at xmas and couldn't exercise for awhile due to the respiratory symptoms, and now the bleeding is largely preventing me from exercising, so weight loss right now is tough with just exercise so I'm seeing a need to cut a few calories.)

I guess I should give an exercise update. I haven't done any. On any days where I'm having bleeding and/or just not feeling great, I'm opting to rest. So far that's been every day this week, although today I'm doing fairly well. I told myself that if I have a good day with no blood, then I should make the most of it. So I'm thinking I'm going to do some gentle exercise tonight - I'm leaning towards yoga. I have a 30 minute yoga program set up in my Wii Fit, it's just the right balance of being a bit challenging but not being crazy or anything. It shouldn't make things worse at any rate. It's things like the sun salutation, the warrior pose, etc - nothing that contorts me into a pretzel (not that I could anyway, I'm ridiculously un-flexible). So I think I'll do some yoga tonight, and assess how I'm feeling tomorrow and go from there. If tomorrow I'm still feeling okay, then I might just sneak to the gym for some weights (I'll avoid the abdominals machine so that hopefully my guts don't get angry).
03-12-2015, 08:43 AM   #1455
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Update 3/12/15: I didn't end up doing yoga. I got home and my guts started grumbling and I felt a bit run-down, so I rested instead. Had more blood in my stool just before bed. Slept okay but woke up feeling fairly bad. Guts are not happy, I feel exhausted, I'm slightly more pale today than I've been and I'm so cold. I'm wearing a sweater and a scarf, I have a little heater pointed right at me, and I have a mug of hot tea, but I'm still freezing and can't seem to warm up. I'm not sure if I'm just having an "off" day or if this is a flare thing (I haven't had night sweats or getting up in the night to go or even much nausea so if it's a flare, it's giving me some abnormal symptoms - I do get chills in a flare though so who knows).

I'm a bit concerned that I'm slipping into anemia. On Monday when I had my bloodwork done, my CBC was still within the normal range, but it was lower than my normal - lower than what I've typically been at in the past. And I've had blood in my stool at least once per day since then, so maybe I'm just on a downhill slide towards anemia and the paleness & coldness are due to that? I'm not sure. My GI had said to call him about 10 days to 2 weeks after starting the steroid suppositories, so I'll be calling him next week. At this point I'm guessing we'll do the flexi sig since I'm still bleeding, and today I sure don't feel like I'm getting better - feels like the opposite. I really need to get this figured out so I will request the flexi sig unless I make a miraculous recovery in the next few days.

So, I guess once again it's a rest day. Getting really frustrated with my body.
03-16-2015, 09:28 AM   #1456
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Update 3/16/15: Not much to report. I had 2 or 3 days with no bleeding, but then the bleeding came back last night. My anus HURTS today and I seem to now have a few external hemorrhoids to go with the internal ones. Ugh. Going to call my GI in a couple days and schedule the flexi sig. It's definitely yet another rest day and I'm frustrated and depressed.

I'm once again doing a liquid diet for most of today (smoothies for lunch & dinner, something solid but low-res for dinner). I can lessen the bleeding & pain by doing that, and I have a few lbs to spare anyway so I guess that's a win-win although honestly right now nothing feels like a win. I'm quite bummed out that this has continued happening in spite of the steroid suppositories. And of course when I get depressed, my anti-depressant of choice is exercise, but I can't work out right now which depresses me even more. Sorry, just having a little pity party for myself over here. I've been throwing myself a lot of pity parties lately. I feel kind of pathetic.
03-17-2015, 04:09 AM   #1457
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Not pathetic, just sick. I hope things improve for you soon.
03-18-2015, 09:29 AM   #1458
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Thank you, UnX. It's been 10 days on the steroid suppositories without much improvement, so I emailed my GI this morning letting him know that and requesting that he schedule the flexi-sig for me. I also finally broke down and told my boss about the bleeding - it's been a real struggle to get through work some days, so I felt like she needed to know what's going on and why I'm struggling. Her response? "You're too young to be going through this!" Ugh, that old chestnut. Also, really? I mean, I told her I'm bleeding and she said I'm too young - does she think there's an appropriate age at which it's acceptable for a person to start rectally bleeding??

I had to go out yesterday and purchase some items for an upcoming work event, and it seems that even just walking around stores now is not doing good things for me. I went to 7 or 8 stores, and I think in the 2nd store, my anus started hurting quite a bit. I just had to walk slowly and carefully through the rest of the stores. It was fairly miserable. So now it's even a struggle just to go shopping, great. Being able to properly exercise again just seems to get further and further out of my grasp. I'm not happy about that.

So, right now I'm just waiting to hear back from my GI's office about when I can have the flexi-sig. Hopefully soon. In the meantime I'm still resting and just trying to do what I can to feel better (got some stronger hemorrhoid cream for my backside, and have been doing Epsom salt baths most evenings).
03-18-2015, 11:12 AM   #1459
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I had an appointment at an osteoporosis clinic this morning - even the posters on the walls and the stacks of patient information leaflets they had everywhere seemed to imply I should be old. But an appropriate age for rectal bleeding? Maybe she just meant you're too young to be dealing with chronic health problems, which is kind of true. Lots of young people do have health problems, but enough of a majority don't for ill health to be considered mainly something that happens with old age. Good luck with the sigmoidoscopy.
03-19-2015, 04:42 PM   #1460
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Yeah, I'm pretty sure she meant I'm too young to have so many health problems, but the way she phrased it made it sound like she was saying I'm too young for rectal bleeding. At any rate, neither one of those is a helpful comment, really. Okay, I'm young-ish (35) and I have health problems - those are the facts. Telling me I'm too young for health problems isn't exactly going to make them go away and doesn't really make me feel better, either. I have an aunt who is a nurse who once also told me "You're too young for this." I was like, um, you're in the medical field, do you not have a more supportive or less generic thing to say to me than that? She surely sees people of every age in the hospital where she works. Plus, her own daughter (my cousin) has fairly bad health too - she's had 4 or 5 miscarriages at this point and all sorts of things like stress fractures, ovarian cysts, possible celiac, etc. She's in the ER more frequently than I am! So anyway, I guess I just don't get that comment. I feel like saying to people, "I'm young and I'm sick, deal with it!" Maybe I should have that printed on a t-shirt.

Still no exercise happening today. Had a very painful bowel movement this morning with lots of blood. That was a depressing way to start the day (the bloody stools tend to happen most often at the end of the day, just before bedtime - I take the steroid suppositories last thing before bed, so theoretically they work their magic while I sleep and my guts should be relatively okay when I wake up, but that was not the case today). I thought about calling in sick, but most of the office is out at an offsite meeting so they were counting on me to hold down the fort. So, I went to work even though I wasn't feeling so great. To cheer myself up, I did some shopping. I saw that one of my favorite local thrift shops was having a sale today - sometimes they do a $2 pants day, and I absolutely love $2 pants day (if I'm lucky, I can score really nice high-end designer brands for only $2 per pair!). And today happened to be a $2 pants day, it had been a couple months since the last one and I was very excited about it. So I went to the thrift store on my lunch break, and they happened to have some really nice workout pants in my size. I ended up with 3 pairs, all are like new condition. 2 of them are Nike and I forget what the other one was. They all fit perfectly. So, whenever I'm able to work out again, I have some very nice new workout pants for a grand total of $6. That makes me happy, but sad too. I love buying new workout clothes, but it depresses me when I can't use them right away. Still, I will be very happy when I do get a chance to finally wear them. I'm looking forward to that day.
03-20-2015, 05:24 AM   #1461
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I don't find that kind of age comment annoying, the ones that annoy me are ones that fail to recognise that young, ill people exist. E.g. one time when I was at uni a guy was going on about politics and complaining that one party was promising to put more money into the NHS, and he said they were only doing it because most people who vote for them (and who vote in general) are old. I.e. that young people don't get sick and don't need the NHS. That kind of comment annoys me. (The guy who said it later asked me out and got very angry when I refused to be his girlfriend. He asked me to an "all you can eat" restaurant, because obviously eating a massive meal is just the kind of thing I like to do.... how do some people decide they want someone as their partner when they don't know one thing about them?!)

Shopping is one of my mood boosters too, though it's online shopping for me. Even if I was well enough for going to actual shops, I live in the middle of nowhere, so online shopping is far more practical. I hope you get to try out your new things soon. I think I remember a while back reading posts where you said bleeding isn't a symptom you suffer from; is the bleeding new or am I misremembering? Do you think it's haemorrhoids or Crohn's causing the bleeding? Before I had an ileostomy I used to get internal haemorrhoids and they can cause a scary amount of blood for something so relatively harmless, and if it were haemorrhoids it might explain why the steroids aren't working well.

Last edited by UnXmas; 03-20-2015 at 08:45 AM.
03-20-2015, 09:05 AM   #1462
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That's correct, I'm not usually a bleeder. I first got sick in 2009 but I only started bleeding in 2013 - I didn't bleed at all for the first 3 or 4 years of my illness. In spring of 2013, they stopped making regular Asacol (the one where you take 6 tablets a day). Asacol had been my maintenance med, and I had been in remission and doing fine on it, I had been in remission for 2 years thanks to Asacol. But when they stopped making it in the US (the patent was up and they could no longer make buckets of money from it), my GI put me on Asacol HD instead as they do still make that here. But it turned out that I can't digest those two huge pills a day, they were passing through me undigested, so I was essentially getting no medicine and I entered a mild flare at that time. Shortly after that is when the bleeding started. It was sporadic - like one episode of bleeding every 3ish weeks, and it often seemed to happen after a bicycle ride for some odd reason. I had a colonoscopy in Aug 2013 and that determined that the bleeding was caused by internal hemorrhoids.

I was still in a mild flare, and in Feb 2014 I convinced my GI to put me back on Entocort in an effort to achieve remission again. I was on Entocort from Feb to Oct 2014. I didn't bleed at all from Feb '14 until Feb '15. A year of no blood and I felt like I was getting back into remission. Then, about a month ago I stupidly ate something that was whole grain and really high in fiber. That just seemed to set everything off and that's when I started bleeding in earnest. The past few weeks, I've had bleeding like never before - it's almost every single day and sometimes multiple times per day. I'm still guessing it's hemorrhoids and/or a fissure - the blood is always bright red and my anal/rectal area feels quite painful (it feels like really bad hemorrhoids). I definitely have external hemmies which are quite painful, and I presume I still have or again have internal ones which are the culprit for the bleeding. My guts are a bit unsettled too and last night I had a wicked episode of nausea, so it could be a bit of a flare going on as well. I'm really hoping it's just horrendous hemmies, and maybe my GI could do something about them (band them?) during the flexi-sig (which I'm still waiting for a call back on, I left another message with my GI's office this morning).

So yeah, long story short, I definitely am not typically a bleeder and in the past my sporadic bleeding has been due to hemmies. This bleeding every day thing is new to me and I really don't like it, so I hope the flexi-sig happens soon so that I can know exactly what's going on and what we can do about it.

I had another bad episode of blood last night - that's 2 bad episodes yesterday. I'm afraid the bleeding seems to be getting worse rather than better. I'm also worried about an upcoming event. A week from tomorrow, I have to help out at a work event that is 2 hours away - I have to help set up, wear a fancy dress, help hand out awards, help with taking photos, basically I have to be on my feet for the whole evening and it's not optional. At this point, I'm not sure how I'm going to do it. It sounds exhausting and at times I'm getting light-headed, so there's a risk that I may actually pass out in a fancy dress in front of a lot of my colleagues. Sheesh, how awful would that be! My hubby will be there with me at least, so I'll have someone there who knows what's going on. I'm still really dreading it, though. I'm dreading the supposedly-fun work event more than I'm dreading the flexi-sig, ha ha!

I love online shopping too. I buy most of my jewelry online. (I tend to buy cheap but pretty costume jewelry from China - I know, it's not the best quality, but it's within my budget and it usually is really pretty and I get a lot of compliments on my jewelry.) And wow, how awful that some loser asked you out to an all you can eat restaurant! I'm glad you turned him down, he sounds absolutely clueless. It would have been kind of funny though to go and eat like 5 pieces of rice and then say you're full. He'd still have had to pay for your meal even if you had done that! Ha ha. Maybe then he'd at least think a bit harder about where to take a date to eat.
03-21-2015, 05:54 PM   #1463
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Keep an eye on the iron levels with the bleeding.
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Diagnosed since 1990
Current Medications: None currently. Was on Imuran (150mg/day) and 5-ASA (3000 mg/day) as maintenance meds prior to surgery
Surgeries: Left hemicolectomy 2014.
03-23-2015, 10:28 AM   #1464
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Thanks Hawkeye. I did have bloodwork done 2 weeks ago when I saw my GI, and I can request more bloodwork when I have the flexi-sig. We're definitely keeping an eye on what my blood is doing.

Speaking of the flexi-sig, my GI got in touch with me on Saturday morning (I swear he's never not working) and he said he will order the flexi-sig. Of course, it was right after I heard from my GI that I started to feel better. I don't believe I passed any blood all weekend long. I feel generally less woozy (less like I'm going to pass out), more energetic, and less crummy. It's only been 2 days so I'm not sure yet if I'm actually on the mend. Still, it'd be really nice if this no bleeding thing continues! If I could have the energy to get through the big fancy work event on Saturday, that would be wonderful. So, I'm trying to eat safe foods and still rest a lot just to keep this upswing going.

The downside of this, of course, is that if I'm feeling very well and the bleeding stops on its own, then I may as well just cancel the flexi-sig. I know, that's not a huge downside, but it would be nice to know for sure what caused the bleeding and how to treat it if it happens again. Maybe this feeling good is due to the steroid suppositories finally kicking in? I've been on them 2 weeks as of today. Maybe they just finally started working their magic?

I think, if I'm still feeling reasonably well after the big work event, then I will start exercising again after that. That's my goal right now. I need to get through this week first as I'm basically working 7 days straight (my normal Mon-Fri work week, the big event on Saturday, and then cleaning up & going home Sunday). I'm taking a couple days off next week to recuperate, so I'll be able to properly rest if needed. But, on Monday if I'm feeling okay, I think I will try a brief workout and see how it goes. If it goes okay then I'll start to ramp things up to my usual intensity and length of time. I don't want to push myself too much too soon and start bleeding all over again, but if I can make it through this whole week with minimal/no bleeding, then I think (hope) I'll be in the clear to start doing some workouts again. I'm already getting excited about it! Now I just need this week to be over with!
03-23-2015, 03:17 PM   #1465
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Wouldn't it be worth having the flexi sig anyway since it may still show the cause of the bleeding even though the bleeding had stopped?
03-24-2015, 09:18 AM   #1466
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Yes, it probably still would be worthwhile - well, depending on how soon I can have it. My GI said he ordered the test but I haven't gotten a call yet to schedule it. I'm hoping he put me down as urgent so that I can have it in a matter of days/weeks, rather than months. I had an experience recently with my GP, I had gone to him because of lingering vertigo (I had labyrinthitis for about 3 months from Aug - Nov 2014) and he wrote me a referral for a special type of physical therapy for labyrinthitis. But the waiting list was so long, I think it was 2 months long, and by the time my appointment came around I just cancelled it because I had recovered on my own and didn't have vertigo anymore. So I'm kind of worried this will be another one of those situations, but I guess I'm getting ahead of myself and I should just wait for the phone call to schedule it and go from there.
03-26-2015, 08:54 AM   #1467
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Update 3/26/15: I still haven't done a proper workout lately, but yesterday I tried to sneak a bit of fitness into my everyday life. I moved around some big heavy boxes at work, I walked around a lot, and on my lunch break I did some shopping and bought some heavy things (like 6 lbs of Epsom salt for baths) and carried that all around the store, etc. By the end of the work day, my stomach was not super happy, so that's quite discouraging. (Fortunately though an Epsom salt bath in the evening made me feel better, so I guess that's the silver lining - although I still can't tell if that stuff is actually doing me some good or if it's just a placebo effect, or if a hot bath without any salt would have also made me feel better, etc.) I am feeling okay today, so at least I'm not paying for it the next day. Still, I had hoped that increasing my activity every so slightly wouldn't be a big deal, but my body clearly didn't like it. That's not good. I haven't bled for 5 days and counting so I feel like I must be healing, I guess the process is just going slower than I would like. I was hoping to try to get back into working out next week after I recover from the big work event on Saturday, but now I am not sure if that's wise. It's frustrating, but I am healing and that's not nothing, I just have to be more patient I guess.
03-27-2015, 10:25 AM   #1468
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Update 3/27/15: Finally got my flexi sig scheduled! It's on April 7th, so about 10 days away. And a rather interesting turn of events, the nurse on the phone said I could have sedation for it. My GI hadn't mentioned anything about sedation, so I figured I'd just have to deal with being scoped with no sedation and no pain meds. Nope, it sounds like I can have my usual colonoscopy combo of versed & fentanyl! So I'm leaning towards having the sedation. My hubby is off that day and he can drive me, and it sounds like I can get the full day off of work myself. (I've been toying with the idea of not having sedation and going back to work after the flexi sig, but I think I'm going to play it safe and probably will take the sedation and have the full day off.) This is a relief because the rectal pain has been quite bad today. I'm still not 100% sure I'm going for the sedation, but that's definitely the direction I'm leaning towards.

Still not sure about when I'll be able to return to exercise. I feel very run-down and yucky today. Not sure how I'm going to get through the work event tomorrow. It's going to suck. At this point, I may just wait until after the flexi-sig to get back into working out. Or alternatively, maybe I'll go on some bike rides just before the flexi sig and try to really piss off my hemorrhoids and get them bleeding like crazy just before the flexi sig so my GI can see the full effect of what's going on in there. (I probably won't do that as it sounds kind of awful, but if it gets me a good result from this test...)
03-31-2015, 04:37 PM   #1469
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Update 3/31/15: I survived the work banquet! It was stressful and I was on my feet most of the day which was exhausting (I'm used to sitting at a desk for 8 hours a day, my job is typically not very active). It was also fun though and the food was delicious and I had a good time, it didn't really feel like work, and most importantly my body didn't punish me too much the next day. (Even though I ate salad with dinner!!)

Sunday was mainly a travel day, we had to go pick up our dog (my mom was watching her while we were out of town) and it was a long drive home so that was also rather exhausting. On Monday, I had taken the day off of work because I figured I'd need a full rest day to recover. I actually felt pretty good though on Monday, so we did a lot of stuff around the house. We had some old cabinets in our basement from our kitchen remodel, so we dragged all those out to the yard and broke them down into boards, removed nails & screws, etc. That was like 90 mins of physical labor - I was hitting cabinets with a hammer and removing nails from boards, etc. It was basically a workout in itself, and I feel pretty good today so that's really encouraging! I have a bit of muscle soreness but my guts are pretty good.

So, I'm going to do a short workout tonight to keep this going. Since yesterday was so intense, I'm going easier with things tonight. I have a 30 min Jane Fonda workout DVD and it says it's low-impact, so I'm going to give that a try. If I'm still feeling okay tomorrow then I'll take it from there!

I do have a flexi-sig in a week, though. I haven't bled in something like a week now and I've been feeling better. But I kind of feel like I have to make things worse again so that I'll get a worthwhile result from the flexi-sig. So although I'm super jazzed that I'm doing better, I also feel like I need to purposely sabotage myself and make myself bleed again. Ugh. I just have to be worse for a week, after the flexi-sig then I can continue feeling better again. But still, I guess I need to increase my fiber intake for a few days as that's what set of the bleeding in the first place (specifically, frosted mini wheats - I don't want to go there again and set off another month's worth of bleeding, so I am going to make myself eat something slightly less fibrous - still haven't figured out what just yet). Wish me luck because I feel like either way, I'm going to need it!
04-01-2015, 09:37 AM   #1470
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Update 4/1/15: I did the Jane Fonda 30 min "beginner" workout last night. Holy cow, that's maybe not so much for beginners! The pace was very fast and at times I couldn't keep up. Also, Jane apparently thinks that beginners are ridiculously flexible. I am ridiculously un-flexible. I cannot touch my toes, I cannot do the splits (I can't even get remotely close!). Some of the exercises required those things, so I sort of sucked at those parts. She also had a long section on hip exercises, and I had to skip some of those as my arthritis just doesn't allow for a lot of hip exercise. I did end up in a bit of hip pain last night from what I did do, so I'm glad I skipped some of it. My hips feel mostly okay this morning, so at least I didn't overdo things too terribly much. But yeah, I figured the "beginner" workout would be, you know, aimed at beginners. Not so much!

I'm thinking of taking it easier today since yesterday's workout ended up being more intense than I had thought it would be. It's really nice out and I think I will walk my dog this evening. Tomorrow, if I'm feeling up to it, I'm going to do weights.
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