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My Colostomy Journey Starts Here.................

colostomy sci quadriplegic



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#1 scott73

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Posted 10 July 2012 - 10:42 PM

Well I'm sure you've read my story from other post but here is a recap. 40 yo Male 23 years with SCI. I'm choosing to have an elective colostomy due to constant stomach pain, constipation, hemmoroids, & a bowel program that has ruled my life since 1989. I am posting the entire process as I go through it so you can be informed if you decide to get it done. I have done ALOT of research on the internet and feel this will change my life for the better and give my freedom/confidence back. I first went talk to my surgeon and he feels like I'm doing the right thing. I wore a bag around for a couple of weeks and found what spot under my jeans would be best. That is really important. So here I go. Feel free to leave comments or just follow me if you want.

We decided to do a COLONOSCOPY on one day and my COLOSTOMY the following day. That way I only had to do the Bowel prep once!


Day one (PREP) - Monday July 9th 2012, Got my prep at my pharmacy. It was called suprep. It came with two little brown bottles and a 16oz cup. I had to pour one bottle in the cup and fill with water to the 16oz line. This first cup had to be drank all at once and TWO more 16oz of WATER CUPS had to be drank within one our. The taste was really not too bad but I wouldn't care if I never had to taste it again. I already don't drink much so it was tough. Stomach started cramping withing 30 minutes. I had already taken off jeans/underwear and was sitting on a towel in my wheelchair. So the cramps were pretty bad on top of all the water I had to put down! After feeling a little chill, I knew it was time. I got on my toilet seat and it didn't take long before things sounded like Dumb & Dumber! High pressurewatery poo coming out and lots of it. So I ended up sitting on toilet for about 4-5 hours. Stomach started feeling better every time I would poo. Finally got done with the first bottle that nite. Yes, there was bottle #2! I went to bed and woke up at 5am the next morning. I had to do the whole process all over again. Yes there was still some poop in there so I'm glad I followed instructions. Got off toilet at 9:30am and my colonoscopy was scheduled at 11:00 am. I wore an adult depends just in case I had a squirt on the way to hospital. All worked out and I'm glad I'm finished with the bowel prep! I've been drinking chicken broth, eating jello and drinking tea. I am really surprised that I'm not really hungry. So here I am home now. Colonoscopy went fine and I am scheduled for colostomy at 8am in the morning. I will post if I have wifi to keep you informed of my progress. Scott

#2 Astack23

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Posted 10 July 2012 - 10:48 PM

thanks for posting scott, will be interested to follow your progress
One must have a strong will to make it.

#3 Tetracyclone

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Posted 11 July 2012 - 12:30 AM

I have been wondering if I can handle the prep as I too should have a colonoscopy. Cannot believe I read this... haha

#4 bongorum

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Posted 11 July 2012 - 12:46 AM

This is a very thoughful thread, which I'm sure will assist many here who may one day find themselves considering travelling that same path. Good luck with your procedure.
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#5 Scottyblaze

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Posted 11 July 2012 - 04:05 AM

Good luck brother, hope everything goes well for you. I will be following your progress.

Smile.  Tomorrow will be worse.


#6 julibugs

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Posted 11 July 2012 - 01:11 PM

Good luck Scott, keep us posted on your progress I hope all is going smoothly for you.
Life is not measured by the breaths we take, but by the moments that take our breath away

#7 scott73

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Posted 13 July 2012 - 10:11 AM

I'm on my iPhone. Recovery going well. Just waiting to pass stool before I go home. I have lots of info to share with you guys but don't want to type it on my phone. Will drink coffee this morning to try to get things going. I miss my bed! Lol. Hopefully will get back to computer today or tomorrow. Scott
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#8 greybeard

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Posted 13 July 2012 - 05:25 PM

Great news Scott. Looking forward to the update. Thanks for sharing.

"Do not go gentle into that good night, Old age should burn and rave at close of day;  Rage, rage against the dying of the light" 

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#9 scott73

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Posted 14 July 2012 - 09:08 PM

Hey guys! Well I'm back home. I actually came home yesterday but was drained and went to bed. Since Monday night, this has been a long week. As I stated in my first post, I chose to do a colonoscopy & colostomy back to back so I didn't have to do two preps. If you chose not to do a colonoscopy first, it may be a little easier.

Wednesday July 11th - Got to hospital at 8:00 am. Got prepped and they took me in about 10;00 am. Surgery took 1 hour and 30 minutes. Woke up freezing! Got back to my room and that afternoon was the worse of the whole experience for me. Anesthsia drains your bady. My wife was there with me and it really helped. You really need to have someone there with you the whole time to make the process go easier. Anyway, from about 2pm to 8pm I was really down. Anesthsia must have a depressing affect on me. I'm not used to relying an anyone and I knew I couldn't even get in my wheelchair if I wanted to. The IV felt like a ball and chain. I started to think......what have I done? I thought to myself, "I could be home right now watching tv but I elected to have this done!" I told my wife that. She quickly responded, "yes, you could also be getting ready to spend 4 hours on the toilet again to!" It's pretty much a permanant surgery so I guess I was just second guessing myself. Well, around 8pm, the Anesthsia was wearing off and I started watching tv. I started feeling much better. They heard my bowel sounds wake up also and we were excited about that too. That night around 11pm, I took a zanex and I slept pretty good. The next morning was better. I was really nervous and scared to get up. I had no restrictions with activity so I wanted to get up and move around. You can't leave the hospital before they see a little poop in your bag so moving around helps. Gas comes first. After they see gas in bag, they let you starte eating very soft foods. That helped cause I hadn't ate any type of food since Monday at noon. We went sit out on the balcony on my floor. It was nice. Kinda like a balcony at a hotel in florida. Actually, with the shooting water falls in the parking lot, If you closed your eyes, you could swear you were at a beach. Then it hit both of us. This was actually the first time since we were married that we were away from home so long and didn't have to worry about doing a bowel program. She said,"Can you believe it is all over?" From just considering a colostomy to actually do it and it was done. I had a few visiters from close friends a family that night. I was tired and went to bed but didn't sleep too well. The next morning I planned on getting up and drinking coffee to maybe get something moving. While I was changing in bed, we heard something and finally I poop a tiny bit. They immediately told me I could eat anything I wanted but my appetite was not good yet. I nibbled on a few things. They got papers done and I was discharged at about 2pm Friday morning. I got home about 3:30 and was tired cause I hadn't slept good. So I got in my comfy bed and took a nap with my little 5 year old boy who hugged me the whole time! I woke up a couple hours later, got up and my wife had cooked a gumbo. Still not too hungry, I nibbled a bit. Like clockwork, every night I used to do my bowel program, I was always looking at the clock checking the time. I was doing it again!! Funny, cause now I don't have to worry about it anymore. A couple of friends came over too. Later, I went took a long hot shower. It felt so good. I hadn't showered since Tuesday night. Went to bed and slept like a baby. So here it is Saturday and I'm just taking it easy. Stomach is still bloated from surgery so it hurts a bit. I also have indigestion so that makes it worse. I ate a pancake for breakfast and chicken noodle soup for lunch. Still just have kinda watery poop mixed with a little old blood but that is normal. Still passing gas. Went sit out on our patio this morning with my wife and still saying, "This is too good to be true". The bag goes underneath my jeans and doesn't show. I am long over worrying about how I look in a wheelchair and I will be more than happy to carry around my little bag for the rest of my life to feel this free. Right now, this whole week has been well worth it and I have not one regret!! My wife is an RN so she is helping with the bag changes and dressing me until I feel comfortable enough to bend over and dress myself. I want to give it time to heal. We are already talking about taking a weekend for ourselves and going to New Orleans. I also have Def Leppard tickets for a concert in September!! I really am happy. 100 percent.

Even though I would recommend people with sci to do this, I don't think you should get it done immediately after a sci injury. Why? Well after an accident, You are already dealing with the injury, probably have a foley catherer and adding a colostomy bag on top of that right away would have depressed the hell out of me. I feel only after you have experienced the drooling bowel program for awile and the problems that come with it, you should consider doing this. After 23 years of it ruling my life, I had enough. As others say, I wish I had done it 15-20 years ago. I never really had giving it any thought. Mine was done laparascopic and I only had two small holes in my belly. Amazing. Pictures below show it. Here is a link to another nice article about doing elective colostomies. http://www.newmobili...nal Cord Injury

Please feel free to ask any questions and I hope this helps any of you who are giving this some thought. Michael Scott Lafleur

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#10 Astack23

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Posted 14 July 2012 - 09:21 PM

thanks for posting.
One must have a strong will to make it.

#11 greybeard

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Posted 14 July 2012 - 11:16 PM

Thanks, Scott. Glad you seem to have adapted quickly. Hope you make good use of all those saved "four hour" stints. :D

"Do not go gentle into that good night, Old age should burn and rave at close of day;  Rage, rage against the dying of the light" 

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#12 julibugs

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Posted 15 July 2012 - 10:33 PM

Thanks for sharing Scott, I hope your story will give others an insight into an alternative to being dominated by a long and unpleasant bowel program.
Life is not measured by the breaths we take, but by the moments that take our breath away

#13 MrBump

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Posted 16 July 2012 - 08:30 AM

Since my wife left, I've been thinking about this more. She didn't like the idea of it, my spc freaked her out. So basically I don't have to worry about that now. Couple of q's tho.....

- does it have a constant or strong smell ? I have very sensitive smell and if I smelt it most of the day it'd certainly alter my mood.
- how often do you have to change them ?
- is it mainly liquid or is it semi formed ?
- easy to change with limited finger function (I've had a tt on 1 hand)

Even tho my bowel routine takes only 15-30 mins, I need to rely on people helping and would love not having too and also getting up anytime I want.

Cheers
Failure is not falling down.
Failure is not getting back up.

#14 araitn

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Posted 16 July 2012 - 01:32 PM

Scott, I'm glad the procedure was a success and that you are recovering well. Thanks for posting as it will certainly help anyone considering a colostomy.

#15 Tetracyclone

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Posted 16 July 2012 - 06:56 PM

I share your happiness, Scott.

#16 scott73

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Posted 24 July 2012 - 07:02 PM

Tuesday - July 24th
I am now 13 days post op. Things are going better and better. They have me on Miralax to keep stool soft until I'm fully healed. I can totally change the bag by myself and I'm doing that about twice daily. I did have a couple of rough days when I got home. Appetite was not good and my strength was gone. I did lose weight but I needed to shed a few pounds anyway. My spirits were a little down to because I was not feeling like myself, not eating and was unsure about changing the bag myself. This is a permanant decision and was unsure if I had made the right choice. I don't like relying on anyone. But my appetite is alot better, I'm getting strength back and changing the bag by myself. I DO need help with changing the flange but I don't do that often, about every 5 days and my wife does it for me. If she would ever not be around, my daughter can do it or anyone else I could guide throught it. It's getting easier and easier and has freed up so much time & given me confidence back to go anywhere at any time! I'm dressing myself but need help tying my shoes cause I don't want to lean over that far right now. I also need help undressing in shower cause I don't want to lean down that far until I'm totally healed from surgery. I can't wait until I can mow my grass and excercise again! LOL So to sum it up, I'm still very happy and would not even consider going back to that dreaded bowel program! The following paragraph is how I change my bag.


So we tried the drainable bags at first. I can't get close enough to the toilet to drain it so we would........Take off bag, clean around stoma and put a new bag on. Then, we would drain bag in toilet, rinse it out and hang it to dry in the shower. No matter how much you clean it, even with soap, the old bag would smell really bad. We are now using closed end bags and throwing them away. So now I...........Take out a new bag and put a few drops of M9 deoderizer in it. Line up about 4 flushable baby wipes on counter. I get a freezer ziploc bag open and ready, then wrap a disposable baby bib around flange for in case it leaks or I poop a bit while changing bag. I unhook old bag, put it in ziploc and close it immediately. I clean around stoma and make sure flange is clean with baby wipes. I put on new bag and I'm done. I take off baby bib and throw away if poop got on it. I flush dirty baby wipes in toilet. That's it. It takes me about 10 minutes to do all that myself. 5 minutes if my wife helps. I usually put the ziploc bag into a walmart bag and throw it in my outside trash can. You don't want to leave it in the home. Right now, I have very loose stool taking the Miralax and it smells strong. I don't notice it during the day but at night, if you get under the covers and cover your head, it does have a little smell. This should get a little better over time. I doesn't bother me and my wife does not smell it.

I'll keep you posted on progress....................................

#17 John1967

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Posted 01 August 2012 - 11:17 PM

Scott,
I really appreciate your posting of your colonostomy procedure. I've been contemplating about this issue. I worked every day and it has become a nuisance. I constantly worry about having an accident or am I can go enough in the morning. I also have the sweats with every routine. How are you doing lately?

#18 scott73

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Posted 03 August 2012 - 02:07 AM

Scott,
I really appreciate your posting of your colonostomy procedure. I've been contemplating about this issue. I worked every day and it has become a nuisance. I constantly worry about having an accident or am I can go enough in the morning. I also have the sweats with every routine. How are you doing lately?


Things are going great! My appetite is back. It's blending in with my everyday life. I forget it's there. My stool has firmed up and I take miralax every night to keep it from being too hard. My body seems to have fallen into a routine where I poo everyday somewhere between 10am and 1pm. I change the bag around 2pm everyday and again before bedtime if I have a little in there. The smell has settled down and I don't smell it at all. I have a routine when I change the bag and it's so easy. Honestly wish I would have done it 20 years ago. So much freedom and no worries. My Dr. has released me to do anything I was doing before but I still will wait another 3-4 weeks before working out. My strength is almost all back. I'm not getting too tired in the afternoons and don't take naps anymore. I truly am happy with my decision. Glad to help! Scott

Edited by scott73, 03 August 2012 - 02:08 AM.


#19 knj777

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Posted 04 August 2012 - 12:01 AM

Hi Scott, thanks for sharing your story. My fiance, Jay is C5/C6 complete. Since late last year, he's had alot of diarreah, stomach pains, bloody stools, ETC. We all thought it could be C-Diff, colitus, Crohns disease, colon cancer, you-name-it, we thought of it
After 10 months of diet changes, MRI's, colonoscopy, CT scans, blood tests, it all shows nothing is wrong. We are very frustrated with this. So I brought up the colostomy bag to Jay. He didnt like the idea. He's been injured since 1986. He's only had problems since last year, so he's relly hesitant about this. I understand his hesitation, because we could give this more time to see if we can really find out what is wrong. I am going to have him read our post, so he can see what it is like afterwards. So thanks for posting your story.
Life is good....

#20 John1967

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Posted 05 August 2012 - 03:50 PM

Scott,
thanks for the reply. It seems like no one would consider the procedure unless they have significant issues. Which makes sense. I guess it's a matter of getting used to the idea and proceeding with consultation with the doctors. Thank you for your reply

#21 Tetracyclone

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Posted 05 August 2012 - 03:53 PM

Hi Scott, thanks for sharing your story. My fiance, Jay is C5/C6 complete. Since late last year, he's had alot of diarreah, stomach pains, bloody stools, ETC. We all thought it could be C-Diff, colitus, Crohns disease, colon cancer, you-name-it, we thought of it
After 10 months of diet changes, MRI's, colonoscopy, CT scans, blood tests, it all shows nothing is wrong. We are very frustrated with this. So I brought up the colostomy bag to Jay. He didnt like the idea. He's been injured since 1986. He's only had problems since last year, so he's relly hesitant about this. I understand his hesitation, because we could give this more time to see if we can really find out what is wrong. I am going to have him read our post, so he can see what it is like afterwards. So thanks for posting your story.


Has he tried probiotics? Was there antibiotics treatments within the last few years? Sometimes that will lead to this sort of change.

#22 scott73

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Posted 05 August 2012 - 06:53 PM

Hi Scott, thanks for sharing your story. My fiance, Jay is C5/C6 complete. Since late last year, he's had alot of diarreah, stomach pains, bloody stools, ETC. We all thought it could be C-Diff, colitus, Crohns disease, colon cancer, you-name-it, we thought of it
After 10 months of diet changes, MRI's, colonoscopy, CT scans, blood tests, it all shows nothing is wrong. We are very frustrated with this. So I brought up the colostomy bag to Jay. He didnt like the idea. He's been injured since 1986. He's only had problems since last year, so he's relly hesitant about this. I understand his hesitation, because we could give this more time to see if we can really find out what is wrong. I am going to have him read our post, so he can see what it is like afterwards. So thanks for posting your story.


I didn't have trouble with diarreah. I did have stomach pain though. Over the years I was scoped twice to look in my stomach. Had an ulcer one time. It could be alot of things. I have indigestion, probably gas pains too. I take aciphex meds for my stomach. A colostomy may or may not help with stomach pain. I did not do my colostomy because of it. I did it so I don't have to do bowel programs anymore and to give me freedom back. I am so enjoying life more now. I only have to change the bag once or twice a day. My wife changes my flange about every 4-5 days.

#23 scott73

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Posted 11 August 2012 - 10:29 PM

Well, 33 days post op and I'm loving my colostomy if that sounds possible! I really am. Back to my old self, working, cutting grass and all. Changing my bag mostly once a day. It seems to be active from 10am to about 2pm. I change the bag and usually am good till the next day. Wife changes flange every 5-6 days. So easy, so fast. Freedom at last, Freedom at last, Freedom at last!!!!! My wife does miss me cleaning the toilet after my bowel programs though! LOL. My butt does not miss that toilet though!!!!

#24 greybeard

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Posted 12 August 2012 - 12:01 AM

Pleased to hear you are doing well.

"Do not go gentle into that good night, Old age should burn and rave at close of day;  Rage, rage against the dying of the light" 

[Dylan Thomas]


#25 scaldedcat

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Posted 12 August 2012 - 03:44 AM

Happy for you Scott, best thing I have had done since my accident. I remember the two years of accidents in bed, with my fiancee replacing sheets at two in the morining, me getting cleaned up and in the shower. My lowest points, I literally didn't want to go on. Now, no accidents, no bowel therapy, the best. Congratulations on your successful change of lifestyle.

#26 KK*

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Posted 22 August 2012 - 03:09 AM

Scott, Thank you so much for posting this. I have to have a urinary bipass so I asked my surgeon to include a colostomy simultaneously, he agreed.so, i now have surgeons coordinating their schedules and then I will go in for surgery.I read this post today for the first time and most of my worries/concerns are gone. I do wonder though, are there noises when gas passes or u have a BM? I am in meetings alot so this is something i need to be prepared for if so. What about leakage? Any other negatives i should expect?

#27 scott73

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Posted 23 August 2012 - 05:46 PM

Scott, Thank you so much for posting this. I have to have a urinary bipass so I asked my surgeon to include a colostomy simultaneously, he agreed.so, i now have surgeons coordinating their schedules and then I will go in for surgery.I read this post today for the first time and most of my worries/concerns are gone. I do wonder though, are there noises when gas passes or u have a BM? I am in meetings alot so this is something i need to be prepared for if so. What about leakage? Any other negatives i should expect?


I'm sure people are different but I rarely hear mine. The first month it will make a few noises but it will settle down. I have meetings too, I'm a home designer. I started putting on a little music in the room just incase. Never had any leakage. If you prepare your skin right before sticking on the flange, you should have no problems. My post prepared you on what you will go through. When you get back home, email me and I'll help you with your routine and what supplies I find works best for me. Stick a flange on and wear a bag now. You need to find what place works best for you. Mine is pretty low. Stays under my jeans. Put a mushed up banana in there to act like stool. I'm so used to mine already. I forget about it most of the time. SOOOOOOOOOOO much more freedom & no worries about accidents. I'm glad your doing it two years post injury instead of 23 years like me!! You will come to appreciate it.

#28 hisgirl0703

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Posted 23 August 2012 - 10:09 PM

Okay, Does a colostomy help with hemoriods? My bf does not have a colostomy.. he does his BR in the morning before work.. But he does have problems with accidents and ofcourse the ongoing issueswith hemoriods...

#29 Tetracyclone

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Posted 24 August 2012 - 12:54 AM

Okay, Does a colostomy help with hemoriods? My bf does not have a colostomy.. he does his BR in the morning before work.. But he does have problems with accidents and ofcourse the ongoing issueswith hemoriods...

An ordinary BP will agrevate hemorrhoids because of the digital stimulation. As to accidents there is a lot of advice related to this in the bowel and bladder section of the forum.

http://www.apparelyz...-bladder-bowel/

#30 jjbeck

jjbeck

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Posted 22 September 2012 - 02:58 AM

I am a C4/C-5 quadriplegic. I have been injured since October 14, 2000. I do my bowel routine every morning. The “program” usually takes 3 ½ hours to 4 ½ hours per day. Every evening I drink 4 ounces of prune juice, drink benefiber, and take polyethylene glycol and stools softeners, just to help prepare me so I can go to the bathroom the next morning. Every day of my life for the past 12 years this “program” has ruled my life. I didn’t have any problems with hemorrhoids until the past couple of years. (I actually discovered this site while checking for something to do about them.) I have considered the colonoscopy a couple of times but my nurse and my wife usually talk me out of it. Nobody, except those of us who live this life knows how a bowel routine can rule your life! We have to watch what we eat, live our lives feeling like we could have a “accident” almost anytime, especially when we go to bed at night. I have let my “program” rule and run my life to the point that I have considered suicide.

Scott, thank you so much for your post. I go to bed tonight and pray that I make the right decision for me.
Thank you, Jim


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