Getting a wee annoyed and a quick update

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Jeff D.

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Apr 22, 2006
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My body is like a ticking time bomb, during the day I'm fine and dandy and once I'm ready for bed my intestines roar into action. It's like a race that goes on and on and on. Blah, it's just annoying and messing with my sleep pattern. I know it's due to my intestines narrowing and such which I'm having a dilation for on Wednesday this week so who wants to stay up with me for the fun ride on the BM train.

Luckily my GI agreed to let me go on Miralax treatment instead of the Half Lytely crap, it probably wouldn't have mattered anyways because after a couple glasses of HL I would have just switched to the million times better Miralax.

Anyways, that's what has been going on in my life. Talk to yall later, as I write this from my bathroom.lol
 
Hi Jeff. :)

Sorry to hear you're having a hard time of course, but you're not alone. There are a couple of us awake and having conversations with our Colon Ninjas. :)
 
Haha, thanks. It's not that I'm opposed to going to the bathroom. It's better then when I was first hospitalized after not going for a month and a half. It's just that I'm really tired and I want to sleep...
 
Yep, definitely an inconvenience. I just can't wait for my dilation on Wed to come and hopefully it take for longer then the past ones I've had.
 
I had one that literally lasted al but 2 days. Sometimes they last a few weeks. I had one done surgically that lasted quite a while. Luckily I've learned to take a dose of Miralax whenever I feel backed up so I don't get blockages anymore and that's helped last until this one which won't be surgical. I figure if I can hold off on the amount of dilations I get the better things will be. I'm just waiting a few years as I'm hoping to soon get stem cell injections in my scarred portion of intestine so I can be healed of the scarring.
 
Well hopefully this one lasts a long time for you! I've never had one myself, so I don't know a lot about them.
 
Thanks, my doctor usually uses his hand to pull open the scar tissue as it's only about an inch inside my rectum. It's rather painful but I'm expecting some nice pain meds next week. If I say something weird Wednesday or Thursday just look past it.lol
 
You could wear a daiper to bed! ;)

Just kidding, I hope it works well. Can they do dilations in the small bowel? That's where my narrowing is but I'm pretty sure yours is lower down.

Ha ha and have to say that when i first read your description about how long they lasy, I thought you meant you were having the procedure done for a few weeks!
 
Jeff D. said:
Thanks, my doctor usually uses his hand to pull open the scar tissue as it's only about an inch inside my rectum. It's rather painful but I'm expecting some nice pain meds next week. If I say something weird Wednesday or Thursday just look past it.lol
Click to expand...

You know, that really doesn't sound pleasant. I hope to hear at least one weird thing. :) haha
 
Haha Shaz, no the it's just how long before my scar tissue reforms and annoyes me yet again. My scarring is in the rectum. For you they might be able to take a balloon and open you up that way. I'm just hopeful that in a few years those of us with scar tissue will be able to find relief when they can make stem cells hold off our scar forming cells until we can regrow healthy cells. That way we won't have to worry about scarring.

misscris:I don't know why, maybe it's being sleep deprived but I just busted laughing when I read that.lol
 
Since I'm not very informative in a lot of this information .... What exactly would that do? Keep pain away and avoid resections and such?
 
That would be nice! I don;t actually know if i have scarring at this stage. When I was scanned and initially diagnosed they said it may be tenporary stricturing because of inflammation but they won;t scan me again unless I get really sick so I don;t know if it's still there or not!
My recent problems in the past week or so may indicate it is still there or at least has come back :(
Have fun with the hand up your bum! Urgh!
 
I don't want to get scientific as I really can't think about that right now, I'll be able to write about it better later. But we have cells that create scar tissue. If they can figure out the correct amount of stem cells to give those cells can make the scar tissue forming cells think there are already healthy cells in the area so they do not grow. That means you grow regular epithelial cells instead of scar tissue. It has the possibility to reduce the rate of resections that are due to scarring and it would help to reduce scarring during resections and other surgeries.
 
Shaz, I hope it's just some temporary inflammation and not scarring. Good luck, well I'm going to try and get some sleep finally. It's about 2:30 right now. See ya'll later, hopefully I can actually get to sleep...
 
aw Jeff you poor thing :( i hope you manage to get some sleep! i have just been through 2 nights of total insomnia (tues and wed).. saw every hour through the whole night.. it is horrible. i felt awful, especially the 2nd day and that was New Year's Eve.. had loads to do as we had friends coming round. losing sleep consistently is one of the worst things anyone can go through.

i hope you get a lot of relief from the procedure on wednesday.. thank goodness you don't have to wait too long till then!
 
I'm sorry Jeff! Although it is kinda funny that we get to share your intimate (and long) potty time together :O) Thank God for wireless internet and a laptop right?
I hope the dilation goes well and STAYS open for a long time for you. It must be so frustrating. If they give you good meds - just make sure you come back here and share the love with us - we'll get humor from your drug induced conversations I'm sure. Good luck buddy!
 
Thanks guys.

Shantel: I often do my interwebbing from my laptop on the loo. It's a great way to pass the time while I sit here patiently awaiting the fecal contents to ship out of their loving bond with my rectum.

Dingbat: I'm sorry about your total insomnia. It was about 4 in the morning when I finally shipped to bed. I woke up around 10 so I'm getting a decent amount of sleep but I just wished I could get to bed earlier.
 
Hi Jeff D,

I am sorry that you are in such pain, I hope you are feeling much better soon!

:)
 
Thanks, I'm just glad nothing is really hurting. At this point I'm still having mostly solid stool. I just wished it was larger than a #2 pencil and that my stomach would give me a break so I could sleep. I just feel like I can never complelely empty myself, if you know what I mean.
 
Sorry Jeff....Good luck with the dialation. There so many different aspects to this disease. It really is whacked!!! I wonder if it happens at bedtime because you are relaxed more and notice the urgency sensation??
 
Sorry to hear about your recent insomnia, etc. I also usually get my worst symptoms at night--I figure it was probably b/c I don't pay attention to my body during the day while I'm at work or I eat too much for dinner. I notice that eating smaller meals does help, but maybe you've already tried that? Many times I just get awful pain and "urgency" (but not success, if you know what I mean) after I eat a large meal.

Good luck with the procedure--it doesn't sound like fun but if it gives you relief I guess it is worth it, especially if you make sure they give you plenty of pain meds.

I noticed your info says "Bama"-- I'm from Alabama too... ready for the National Championship? Roll tide
 
Thanks guys, IMP I think you hit the nail on the head. I think it's because my body starts to relax and do I start the flow. For me all of my problems are due to my stricture of scar tissue which makes the stool get stuck in me so I get backed up. Then once I'm backed up my body thenn evacuates the stool piece by piece...ugh

UAB I'm definitely making sure I have plenty of pain meds. Last year I had about 7 dilations from Mid-January to April so I'm hoping the same doesn't happen again this year. It's strange when you get used to people shoving equipment up your bum.lol

I live in Bama right now, Athens to be exact, but it's not really my home. I'm originally from New Orleans then moved to Connecticut then to Bama and I am hopefully getting out of here soon. That said I don't really pay attention much to football. I only root for the Saints and LSU. I'm not much of a sports fan though. I didn't even know the National Championship was coming up.lol
 
I'm getting a little nervous. I've made a few trips to the loo so far tonight and I just realized I am on my last roll of TP. I'm a little nervous I'll run out but I guess I can always shower if I have to after each BM...
 
Jeff, sorry but that last post made me laugh!!! :)

Alternatives to TP: paper towels, napkins, kleenex.

YES this has happened to me as well and I now get nervous when I get down to a couple rolls of TP. I buy the huge case from Costco now just so I'm not in danger of getting down to my last roll...lol
 
Hey guys another update. So last night I spent most of my time in the bathroom. I've been having chills all night, D, and a constant back and leg ache. I feel horrible right now. My head hurts. My intestines are twisting up inside of me. Ugh...
 
Nope, I've never had the flu before. I don't have any cough or anything. My achyness is from pushing out stool. I've been dehydrated all night and didn't feel strong enough to grab some water.
 
No, I live with my parents. I started drinking a bunch of water a little bit ago. I just didn't feel very good to walk across the house and get my parents.
 
I'm sorry buddy! You really need to stay hydrated. I know you know that - but Carrie and I are just gonna mother hen you if you don't!! Feel better and take it easy - sounds miserable!
 
Thanks guys for all the support. I've been drinking some water mixed with green tea and pomegranite flavoring. It's hard for me to drink plain water at the moment.
 
Thanks Shaz. I just want to feel better soon. My whole body is aching right now, I just feel all icky if you know what I mean. I feel like even when I'm not in the bathroom that I'm still having to go. Anyways, thanks for all the support ya'll, it's really meant a lot ot me.

Jeff
 
I hope you feel better soon Jeff...Aching pains from inflamation hurt worse than any muscle soreness. Does Tylenol help at all???
 
Thanks, I took Tylenol a little while ago and I think it helped me out a bit. I think I may have had a fever all day because I fell asleep around 9-9:30 and woke up around 12 completely covered in sweat. If I wouldn't have known any better I would have thought I took a shower with my shirt on it was that wet. It also had a strange smell, similar to urine but it couldn't have been as it was on my shoulders.
 
My procedure is on Wednesday. I don't think I'm blocked up any more because usually when I'm blocked up I can feel my intestines are hard and at the moment my intestines seem to be soft. I'm just ready to have the anesthesia start pumping through my veins so I can have some good sleep.
 
wow Jeff, that sound awful. Sorry you're going through that, i really hope that your procedure works, and lasts for a reasonable amount of time!
 
Thanks for all of the support guys. I just took 4 tablets of bisocodyl. I'm still going to the bathroom quite often so I can imagine I won't need to take quite as much laxative as I think I'm pretty much done. They told me I couldn't eat today and all I ate yesterday were two pieces of toast with a little bit of butter. I just can't wait for tomorrow so I can eat...I'm starving. I've had a little lemon jello and will have the rest for dinner tonight, yum yum. I'm just working on keeping myself as hydrated as possible.
 
Good luck Jeff...IMO Jell-O Is for wrestling in not eating. I can't eat it anymore, I feel for you....
 
It gags me....I can force it down when I'm prepping. It's all in my head from being on clear liguid diets...Even Gatorade is nasty to me now....I'm just wacked in the head.
 
Yeah In understand what you mean. When I was on flagyl I always popped in a starburst or two and now when I see a starburst I can taste the flagyl.
 
Ugh guys. I've been hit by some pretty bad nausea. I was only able to drink a little of the miralax due to my nausea but I'm already having clear to a slight tinge of yellow so I really don't care about going back for more at the moment.
 
Thank you. I just want tonight to go by much quicker so they can knock me out tomorrow. I actually can't wait for anesthesia and for pain meds. I just want a decent nights sleep again.
 
Thanks guys for all the support. I found out that I'm going to soon need surgery to cut open the scar tissue a bit as my scar tissue has gotten thicker. Also, I found out that I have a blockage of stool so I need to get that out by drinking some more miralax.
 
Aw man - that sucks!!! I'm sorry Jeff - hope you get the blockage cleared soon. Praying the surgery will go ok once you get there.
 
Thanks, yeah I had the same surgery last year. I don't know why they even call it a surgery but since it involves a knife I guess it is in the surgery section.lol The thing that worrie me is that it's one step closer to a colostomy. My colorectal surgeon wants me to get the ostomy if he has to open up my scar tissue more than twice a year and that makes me nervous and also part of the reason I put off my GI dilating me.

I also have to use a steroid suppository every day. Anyways, I'm going to try and rest for a little while.
 
Well Jeff, I hope you have been resting easy. I hope your pain is tolerable. Feel better. I was just wondering how you are doing.:)
 
Thanks guys. As of right now I don't really have any pain but I haven't gone to the bathroom yet. Last night I got about 14 hours of sleep. Right now I'm just having a lot of bloody mucus and nothing much else coming out. Tomorrow I'm going to take a bit of miralax to clear me up and get the rest of the blockage out. My GI said yesterday that I lost a lot of blood while he was opening me up so I didn't want to force a BM today. I'm just ready for my surgical opening to happen so I hopefully won't have to have this happen for a while.
 
Crap so I found out when I got my bone density scan that day that I have osteopenia now too. Great what next. I'm 20 freaking years old and if my older docs didn't put me on the freaking steriods for so long I wouldn't be in this mess. It's not a huge deal or anything but I'm pissed off about my past doctors mistake. My GI wants me to go on high doses of calcium and vitamin D and the exercise. I guess that's it for now. Bye
 
Sorry Jeff - I've been there too. This may sound crazy (as a lot of things my MIL said before she died - but most of them have turned out to be true over time) - but if you aren't feeling like exercising on a particular day (for you bones) you can go out in your garage or any cement surface barefoot and jump up and down 10 to 20 times. Make sure to keep your knees a little bent. She said this helps build bone mass as it stresses your bones. Now, it ain't scientific, but what the heck? If you don't have the energy to do a full work out - that is probably better than nothing.
 
Any kind of resistance...Get those elatic bands and veg. out on the couch. You can do arm and leg exercises with it.
 
I had to go run some errands with my dad but I'm going to keep a strict training regime now. I'm goin to go with thiings similar to bootcamp and get back to my Parkour roots. Everyday, since it's butt cold outside, I'm going to run in place, do pushups, core strength exercises, and stretching. Later on when my garage unthaws I'm going to start lifting weights and building small obstacle courses that train my upper body. When spring comes I'm going to go back to the mountains to train running and jumping over rocks as well as climbing and such. I'm going to nick this osteopenia in the butt so hard.
 
Weight bearing exercise is the best way to build bone density. Since I was once in the moving business, I had plenty of that. Now I do not do as much lifting, but i try compensate with other manual labor.

You also need Magnesium in addition to D-3 and Calcium. Magnesium is a pretty important mineral for anyone.

Good Luck with the training.

Dan
 
Yeah, but lifting is pretty much impossible right now. It's 22 degrees in my garage right now so I'm pretty much only able to do body weight exercises. I'm going to do more than just pushups and running in place, I have a lot of versions of each. Once I build my pushups back to 50 per set I'm going to work on burpees and then progress to harder versions of burpees. I figure if I do 100 pushups every other day for a week I can go up to 200 after and keep going. I've done this same thing before so it's not a real big deal. Once you can do 100 pushups 200 doesn't take much longer and doesn't hurt me anymore. When it gets warmer I'm going to take my jumping trainers and jump rope with those as well as work on my vertical and broad jump. I just can't wait for it to warm up.
 
Jeff D. said:
Yeah, but lifting is pretty much impossible right now. It's 22 degrees in my garage right now so I'm pretty much only able to do body weight exercises. I'm going to do more than just pushups and running in place, I have a lot of versions of each. Once I build my pushups back to 50 per set I'm going to work on burpees and then progress to harder versions of burpees. I figure if I do 100 pushups every other day for a week I can go up to 200 after and keep going. I've done this same thing before so it's not a real big deal. Once you can do 100 pushups 200 doesn't take much longer and doesn't hurt me anymore. When it gets warmer I'm going to take my jumping trainers and jump rope with those as well as work on my vertical and broad jump. I just can't wait for it to warm up.
Click to expand...

Jeff, Hiya bud so sorry you have had such a lousy week. Sometimes it amazes me the variety of symptoms and trials that we all have. I hope that you are feeling much better real soon.

What in the world is a burpee my friend? Are those also called diamond pushups? are these the ones where you form your index and thumbs into a diamond shape. I used to be able to do the one armed ones but am definitely not there yet.
 
Last week or so has been awful for me too Jeff, I hope this smooths out and comes to closure man.
 
Sorry for that Jeff. Sounds awful. I just had dilation the other day (Jan 4th) and it was my first. I was sedated and much to my suprise wasn't in a ton of pain. They did the rectum and (to answer your questions shaz) the area where the small and large intestine join. Haven't noticed any changes so far :(
 
Hey Jeff, you are going through alot, and I understand what you are going through. I have been on Prednisone many times and knock on wood, I am okay. I should be taking more vitamin D and calcium but I am a prone to kidney stones... trade off one for the other. I do know exercise keeps your bones strong and you will do it , I know your determination. I have never had a dilation either...we all have our own areas that Crohns has affected us. Hugs!
 
Crazycanuck, this time my dilation hasn't hurt nearly as much as they have in the past and supposedly this has been the most closed I've ever been. I'm just waiting for my surgery consult.

Pen, I just wished I could motivate myself. I've always had a problem doing things on my own, if I didn't have Crohn's I probably would have done really well in boot camp as I take direction really well. Me and my dad decided we are going to start working out together so that's a good thing for me and motivation. I'm going to try my hardest to do everything I need to do and get better.
 
That's a great attitude Jeff.:) I am sorry you are facing this, but I have no doubt you will triumph.
 
crazycanuck said:
Sorry for that Jeff. Sounds awful. I just had dilation the other day (Jan 4th) and it was my first. I was sedated and much to my suprise wasn't in a ton of pain. They did the rectum and (to answer your questions shaz) the area where the small and large intestine join. Haven't noticed any changes so far :(
Click to expand...

Yikes! How do they get into the small intestine? I wonder because I am feeling some narrowing symptoms there again and am hoping that worst case scenario means they give it a bit of a stretch as opposed to surgery in the near future.
 
Jeff D. said:
Crazycanuck, this time my dilation hasn't hurt nearly as much as they have in the past and supposedly this has been the most closed I've ever been. I'm just waiting for my surgery consult.

Pen, I just wished I could motivate myself. I've always had a problem doing things on my own, if I didn't have Crohn's I probably would have done really well in boot camp as I take direction really well. Me and my dad decided we are going to start working out together so that's a good thing for me and motivation. I'm going to try my hardest to do everything I need to do and get better.
Click to expand...

I am so proud of you! I too need to get back to my exercises, no good excuse for not but I know that having a firm tummy helps the digestion as well. My motivation comes from my hubby, it is my best supporter and encourages me to get better. I am glad your dad is helping you out. Both of you can listen to Time stand still and enjoy your workout. :)
 
Since I use and follow some of these more innovative treatments, that are not generally known or used, I thought I would throw this out there.

applying electrodes to a treatment area of the body and supplying to the electrodes an alternating current stimulation signal having a generally symmetrical sine waveform and an amplitude of about 10 volts peak-to-peak at a frequency of about 60 KHz to cause a current to flow substantially continuously in a body region affected or likely to be affected by osteoporosis to thereby inhibit rarefication of bone mass.

http://www.google.com/patents?vid=USPAT4467808


And some more cryptic info:

The preventive effect on bone loss of 50-Hz, 1-mT electromagnetic field in ovariectomized rats

JournalJournal of Bone and Mineral Metabolism PublisherSpringer Japan ISSN0914-8779 (Print) 1435-5604 (Online) IssueVolume 20, Number 6 / November, 2002 DOI10.1007/s007740200050 Pages345-349 Subject CollectionMedicine SpringerLink DateFriday, November 01, 2002 Add to marked items
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The preventive effect on bone loss of 50-Hz, 1-mT electromagnetic field in ovariectomized rats
Cemil Sert1, Denı. Mustafa2, M. Zahir Düz3, Feyzan Akşen4 and Abdurrahman Kaya4
(1)  Department of Biophysics, Medical School, Harran University, 63300, Yenişehir Kampüsü Şanlıurfa, Turkey, TR (2)  Department of Anatomy, Medical School, Harran University, Şanlıurfa, Turkey, TR (3)  Department of Chemistry, School of Art and Sciences, Dicle University, Campus, 21280, Diyarbakır, Turkey, TR (4)  Department of Biophysics, Medical School, Dicle University, Campus, 21280, Diyarbakır, Turkey, TR Abstract.   Osteoporosis is a common health problem, especially in the elderly and in women after menopause. Although there are some treatment methods, they impose serious side effects. Recently, the use of an electromagnetic field (EMF) has been a promising candidate for better treatment of osteoporosis. In the present study, we investigated the preventive effects of low-frequency (50 Hz), low-intensity (1 mT), and long-term (6 weeks) EMF on bone loss in ovariectomized rats. We used 18 female albino Wistar rats (8 unexposed and 10 exposed) to assess the effect of EMF. We examined the mineralization and the morphology of the tibia in control and EMF-exposed rats. The cortical thickness of the tibia was increased in EMF-exposed rats (P < 0.002). The levels of Na and K in the tibia were significantly increased in rats exposed to EMF (P < 0.001; P < 0.002, respectively). We also observed an increased blood alkaline phosphatase (ALP) level after EMF exposure (P < 0.05). No significant differences in the levels of Ca, Mg, Li, or creatine were found between the exposed and unexposed groups. Our data support the notion that an EMF may prove to be an effective treatment method for osteoporosis and other abnormalities related to bone loss.
Key words ALP - bone mineralization - creatine - EMF - ovariectomized rats
Receivd: June 27, 2001 / Accepted: June 28, 2002
 
Thanks guys for the motivation and Pen maybe we will play Time Stand Still.lol

DBergy: I haven't been able to read the link you posted but can I use a Tens machine as the electrical device or is there another thing I would need to use. Thanks
 
The TENS unit would have to put out the same frequency and close to the same voltage. I do not know what they actually use, but it is probably not the same.

I would guess there are several frequency generators that can duplicate this output.
There are hundreds of different types.

I have a couple that can produce both frequencies, but I would have to check on the amplitude, I am guessing that is not as important.

Dan
 
Thanks, I was just wondering. I don't have much money and I have a TENS unit at my house already. I think exercise is probably the most important thing right now so that's what I'm going to do most right now.
 

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