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Crohn's Disease Forum » General IBD Discussion » Hospitalized again/ NG for first time


 
03-23-2015, 04:26 AM   #1
Aiyale
 
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Hospitalized again/ NG for first time

Hello! I was recently diagnosed with Crohn's in January and had an 8 day hospital stay in Feb for a bad block but was able to get passed it with just medicine and diet.
I'm currently back in the hospital. I was tapering down on Prednisone and started to flare, went back up to my "safe" dose but it was too late, the flare came on strong. It wasnt the worst one ever, but I was extremely bloated and on Saturday I couldn't keep any food down. I knew something was off when I also started to throw up liquids which had never happened before. By Sunday morning I was severely dehydrated and worried about not being able to keep my meds down if I took them, so I went to the ER to get fluids. I didn't think I was so bad, just dizzy and dehydrated. It happens, right? Wrong. They did a CT And found I'm blocked again, I'm on an IV of 120mg of prednisone, two antibiotics, lots of fluids and for the first time ever an NG tube. the male nurse in the ER who put it in was very gentle (his daughter is my age and also had Crohn's, since I'm a newbie he said I should get used to this) unfortunately I freaked out the first time he put it in and made him take it out and redo it (stupid me). They admitted me and it looks like I'll be here at least another day, if the tube works. I'm surprised, I didn't realize my flare was so bad....the doctors told me the NG is to help take pressure off my stomach and if they can't that I'm going in for surgery. Needless to say, I'm freaking out but trying to stay calm. I didn't realize my flare was so bad...

I have three questions:
1. Has anyone else had what they thought to be a mild flare and in fact is not? How do you know? Should all flares be treated as if they're the worst?

2. The NG tube is really bothering me. It's mostly where it meets the back of my throat, I feel as if I'm constantly choking. Does any one have any advice on dealing with the NG? I've had it in overnight so far... will it get easier?

3. I'm scared of surgery. I want to keep all of my bits as long as possible. Can I tell my doctor I want to wait on surgery until I start Humira? Or is it an emergency that they have to do it now? (Scheduled to start Humira within the next month )

Thanks in advance
03-23-2015, 12:28 PM   #2
The Real MC
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Signs of a flare-up are exactly what you had - dehydration, vomiting, bloating/inflammation. It's a matter of recognizing the warning signs, and they are not the only ones. You did the right thing to go to ER.

I have been on the NG tube twice. It is very uncomfortable and it does not get easier over time. Both times I had to wear it for three days. The less you use your throat - and that includes talking - the better.

The purpose of the NG tube it to idle your digestive system so it can heal. It drains the bile from your digestive system to suspend digestion of food. You should be getting nutrients from IV. The IV prednisone will aid the healing process, but when I was on that high a dosage it took a few weeks after discharge for my body to recover before I could return to work - my muscle motions were screwed up. They'll remove the tube and start you on liquid diet progressing slowly to solids, while monitoring your digestive system. If your piping shows signs of movement and the blockage clears then the NG tube has done its work.

One thing that helped to pass the time with the NG tube was my netbook computer. The hospital has wireless and the netbook was great for surfing the net. A couple of good books to read helps too. I don't watch TV anymore because there is too much junk, not to mention that I don't need to see commercials of pizza and hamburgers with a tube down my throat!

No one likes surgery, but a bad blockage is not to be treated lightly. You are entitled to a second opinion but if it is an emergency then there is a serious reason that should not be questioned.

Good luck!
03-23-2015, 12:37 PM   #3
Aiyale
 
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Thank you!
I recognized the symptoms of the flare but is it awful to say that I thought it wasn't that bad yet? I'm definitely glad I came to the hospital.

Is there anything you found to help the irritation? My throat is on fire and I have stopped talking completely, it hurts that bad.

Should I be receiving nutrients via IV? I've only had the NG tube in for 24 hours...How long can I go without receiving anything?
03-23-2015, 12:54 PM   #4
Grant
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I've had NG tubes & it isn't pleasant. But a nurse showed me a technique that involved me taking a sip of water whilst she inserted it & as I swallowed so it went down my throat, that one time it worked a treat.
Obviously no one wants surgery, its a last resort but an obstruction can & has killed people because of bowel perforation. So its the lesser of two ills so too speak.
However some people have had great success with a Colonoscopy featuring a Balloon Dilitation, it all depends on the extent of obstruction & whats causing it. Active Crohns or old scar tissue, myself I've had very little joy & although I'm willing to give it a go & have done many times it usually closes up again within a few weeks if not days.
Crohns flares, the problem is even if you don't think its that bad if the same area has flared time & again then the area becomes damaged, sometimes to the point where only surgery is an option.
Good luck Aiyale
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03-23-2015, 12:57 PM   #5
Cat-a-Tonic
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I agree that NG tubes are pretty awful. I've only ever had one and it was just in for 24 hours, but even so, it was not a fun time and I really feel for you. I unfortunately don't know of anything to help the irritation - the only thing that helped me was having the thing removed. I'm glad they at least put it in gently for you - when I had mine, it was so painful! I broke my nose when I was a kid and it didn't heal right, so I have a crooked nose and probably a deviated septum now. My right nostril is slightly larger than the left, so I asked the nurse to try the right nostril first. Well, apparently that nostril is no good, which I learned the hard way after the nurse tried jamming the NG tube in about 10 times without success. So painful! I had tears running down my face and she finally tried the left nostril and got it in on the first try, thank goodness. That was just a horrible experience. So yes, I'm also in the "I hate NG tubes" club right there with you!

As for not recognizing that the flare was this bad - flare symptoms and flare severity don't always necessarily correlate. You could have milder symptoms but raging inflammation, or horrendous symptoms but relatively mild inflammation. So don't feel bad that you didn't realize it had gotten so bad, it may be that it just truly didn't feel as bad as it was.

If you aren't receiving nutrients via IV, you should ask the doctor about that. At the very least, you should be getting IV hydration (particularly with symptoms like vomiting & diarrhea). If you can't speak due to the NG tube, write the doctor a note.
03-23-2015, 04:19 PM   #6
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NG tubes and I are not friends.
I have had them a couple times, mostly after surgeries. I read somewhere recently that their use is diminishing. I found them of little use as I can only tolerate them for a maximum of about 24 hours. After that, the irritation actually starts to cause bleeds for me. I actually got my surgeon to realise that after one of my surgeries. As for putting them in, I pretty much need to be sedated. Huge gag reflex.
03-23-2015, 04:44 PM   #7
The Real MC
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The 1st time I wore the NG tube I didn't have the gag reflex.

The 2nd time, it was tickling my gag reflex. Had to be careful with movement of the body and the tube.

And drinking water did ease initial insertion. That's the worst part of the whole procedure. It helped to close my eyes.
03-23-2015, 05:24 PM   #8
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Im sorry I have not much advice on your situation. Maybe bitting Fresh ginger root (really small bite needed) if this is allowed to you, I notice this has anasthetic properties when I have sore throat. But ask the staff because I wouldnt want you to aggravate your irritation, as ginger is pretty strong. Basically just want to wish you best of luck for whatever is coming, hopefully a treatment rather than surgery.
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03-23-2015, 05:34 PM   #9
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I'm so sorry to hear about your pains.
I can't offer much advice except on the n-g tube.
My little girl has the disease and feeding tubes are a way of life for us.
I've heard and it was true for Grace that the first 2 days are the hardest to get use to.
After that the discomfort lessens or stops.
Please keep us posted.

We also have a N-G tube support group.
The link is under my avatar.
Please join and ask as many questions as you like.
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03-24-2015, 10:52 AM   #10
UnXmas
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I've had ngs many times. I found that it's a huge relief when they drain the bile from your stomach. I also found them perfectly comfortable after the first hour or so, I wouldn't even be aware they were there, I've had them for a couple of weeks at a time. There's a knack to getting them down, if you learn the right point to swallow it's very quick. Having them taken out is much easier than having them put in, so once it's down you've done the hardest part. I usually take them out myself now, if the nurse in charge lets me.

I'd avoid receiving anything via IV besides fluids if possible. I'm extremely underweight, and have had times when I wondered why they weren't giving me nutrition and calories into my bloodstream when I was on bowel rest. Then the first time I did have TPN, I got a horrendous candida infection, then had a mini stroke due to a complication when my central line was removed. (But a central line is different to a normal IV.) A doctor told me that if you have TPN, it's a question of when, not if, you'll get an infection, as sugar - which feeds bugs - is in contact with your bloodstream and the outside air. I got an infection after about one week of TPN. I've also had sugar solutions given via more simple IVs which are less problematic, but you don't get the nutrients you get with TPN.

Edit: I'm not sure if this would be relevant to the discomfort you're getting from the NG, but I've had a couple of occasions when the nurse wasn't sure she'd got the NG in the correct position, so they did an X ray to confirm (mine always were). I think this was related to how far it had gone down and it's position low down, but maybe they can check it's placed correctly in your throat somehow? It may be worth asking.

Reading through this thread it seems I'm in a minority as an NG fan. I actually made them delay taking out my NG on a couple of occasions because I was so scared of the pain returning. I'm not, however, a fan of NG feeding - my stomach can't take NG feed and I lost weight on it because I couldn't digest it, and had so much stoma output I had to switch to bigger bags while being fed by NG.

Last edited by UnXmas; 03-24-2015 at 11:21 AM.
03-24-2015, 11:28 AM   #11
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As for putting them in, I pretty much need to be sedated. Huge gag reflex.
Maybe this is why I don't mind them. I don't seem to have a gag reflex. I almost never vomit. When I had post-surgical ileus (which was one of the times I had an NG and the incredible pain in my stomach was just instantly relieved), they missed the diagnosis at first because I wasn't vomiting. Vomiting is a classic sign of ileus, but I didn't. I didn't vomit when I had a small bowel obstruction either. I haven't vomited for years and years despite having every other digestive symptom under the sun.
03-24-2015, 11:30 AM   #12
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Am I right in thinking there is a difference in tube size for ng when related to suction and feeding. My son has never required an ng tube for suction, only for feeding. The size of that tube was 6fr(he was 17 at the time) so basically the size of a spaghetti noodle. I get the impression the ng tubes used for suction are much larger?
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03-24-2015, 12:51 PM   #13
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Am I right in thinking there is a difference in tube size for ng when related to suction and feeding. My son has never required an ng tube for suction, only for feeding. The size of that tube was 6fr(he was 17 at the time) so basically the size of a spaghetti noodle. I get the impression the ng tubes used for suction are much larger?
The one I have in is about the size of a drinking straw. I'm not sure what the actual "size" is but that helps give you a visual. It does get taper into a much larger tube outside of the body as it drains, but the one inside (and I even looked in the back of my throat to make sure) is all about the size of a straw. I was told that they do have a child's size and next time I should ask for that since I'm having such a difficult time with this one. (But that it would stay in longer because it sucks less gunk up at a time....)
03-24-2015, 02:31 PM   #14
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Am I right in thinking there is a difference in tube size for ng when related to suction and feeding. My son has never required an ng tube for suction, only for feeding. The size of that tube was 6fr(he was 17 at the time) so basically the size of a spaghetti noodle. I get the impression the ng tubes used for suction are much larger?
I can't say I've noticed a difference or found either easier to swallow than the other.
03-24-2015, 04:16 PM   #15
Layla
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I had an ng tube for 4 days with my last blockage and I'm no fan! It was very helpful draining stomach contents though.
They gave me a numbing spray for the back of my throat and that really helped. Maybe you could ask for that?
03-24-2015, 04:42 PM   #16
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Yeah, wow a drinking straw is much larger than a spaghetti noodle! So sorry! And yes C's was for feeding so as long as he was able to get all his formula in overnight feedings size wasn't important. We asked for the 6fr since it was only the size of a spaghetti noodle and he knew it would be easier for him to insert and remove easch day for feedings.
03-24-2015, 06:32 PM   #17
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Yes, NG tubes for drainage are a bigger diameter than for feeding. A little more uncomfortable to insert youself in my experience but not always more uncomfortable to have down because although they are roughly drinking straw size they can be quite soft and flexible.

For me the general rule has been that they either quickly become more comfortable (within hours or sometimes overnight) or they stay uncomfortable because the tube has been inserted in a position that causes irritation and once the irritation is there it stays uncomfortable even if the tube is repositioned. Actually I think I might be better to say that disomfort has gone away with time for me but a sore throat hasn't.

I had a very painful drainage NG once after surgery and like you had a really sore throat and could barely speak. It turns out that as I had been inserting it and trying not to vomit (sorry tmi), the nurse who was being my eyes since I didn't have a mirror to hand had miscounted the marks and told me to keep feeding it further when I needed to stop and with more tube length inside it was pressing against the side of my throat. The trouble was once I was able to check for myself a couple of hours had passed and although I then adjusted it to be better my throat was so sore that it never stopped hurting.

So do ask them to check the position but a small adjustment may not stop the sore throat, or it may already be positioned correctly and is unfortunately causing you irritation

Like you I needed the NG tube to do it's job at that point so I was allowed to suck throat sweets containing a little anesthetic to numb my throat a little but the anesthetic spray sounds like it could help.

It is horrible when it hurts (and this is coming from someone who doesn't mind NG tubes at all these days) but if you need it then you need it and I hope that you can make the sore throat a bit more bearable and that the NG helps the blockage.

Whenever I pull an NG tube that's causing any throat or ear pain it always goes away really quickly so that's a good thing.

About flares, as others have said it can be really hard to tell what your body is doing and to judge how bad symptoms are and what they mean. You are not alone in that and in addition you are really new to all of this so definitely don't feel bad about not being sure. You did well to go to the hopsital

You don't need to worry about needing IV nutrition yet and *fingers crossed* hopefully the blockage will resolve before it becomes necessary. If you do need surgery, I definitely understand being scared and reluctant to agree. It's natural to be apprehensive. Ask your doctors what kind of surgery they think they would need to do, because then maybe you can get some more info from people here about what to expect. Surgery can help a lot and it may be that you have scar tissue causing narrowing as others have said and if you have inflammation on top of that in those narrowed sections, that might explain the recurrent blockages. Surgery would get rid of those narrowings and should mean that you aren't in and out of the hospital with obstructions.

What are your inflammatory markers (ESR, CRP) like right now? Also where in you bowel is the disease located?
03-25-2015, 06:57 AM   #18
UnXmas
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Yeah, wow a drinking straw is much larger than a spaghetti noodle! So sorry! And yes C's was for feeding so as long as he was able to get all his formula in overnight feedings size wasn't important. We asked for the 6fr since it was only the size of a spaghetti noodle and he knew it would be easier for him to insert and remove easch day for feedings.
He inserted it each day? When I had NG feeding I kept the tube in all the time, and a nurse connected it up each evening, I was fed overnight, then disconnected each morning, and I just taped the short tube coming out of my nose to my face to keep it out the way during the daytime.
03-25-2015, 07:16 AM   #19
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UnXmas he was given that choice as well. He had feeding for over 3 months(supplental for weight gain) so he chose self insertion/removal daily. He could choose to not change it out each day himself but usually did unless it was the weekend.


Edit to add: we had a training session with a nurse but there are some great vids on YouTube of kids showing how they insert and those were very helpful as well.
03-25-2015, 08:53 AM   #20
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UnXmas he was given that choice as well. He had feeding for over 3 months(supplental for weight gain) so he chose self insertion/removal daily. He could choose to not change it out each day himself but usually did unless it was the weekend.


Edit to add: we had a training session with a nurse but there are some great vids on YouTube of kids showing how they insert and those were very helpful as well.
He's braver than I am; I don't mind taking them out but I think I would have been too worried about getting it in the wrong position to put them in myself. All my NG tubes have been when I've been an in-patient in hospital anyway, so I guess that's why no one suggested an alternative for me. I do remember someone on this forum posting a link to a YouTube video of a kid putting in her own NG tube. This was a long time ago, before I'd had my first NG, and they posted the link to show how easy it was, but I couldn't watch the video without feeling faint and it confirmed my belief that I'd never be able to tolerate having anything inserted into my stomach via my nose.... I changed my mind completely when I actually had one! My first one was to drain my stomach, and when the pain eased, I loved having an NG. I wish I could say the same about things being inserted into my bladder. With that I used to faint every time. After having several catheters I'm not so bad now, but I still get woozy.
03-25-2015, 09:56 AM   #21
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UnXmas, if supplemental overnight feeding is something that you think might help you then I think inserting your own NG tube is well worth trying. For me it was a much less frightening and uncomfortable experience than having a nurse insert it - which I hated.

I felt so much better being in control of the rate the tube was advanced and getting the feedback from my body so I could adjust as needed. And it's nice to know that you can take it out and reinsert when you want.

As to getting it in the right place you measure the length of tube to feed in and when it looks like you have that in the right place, you test for stomach contents with litmus paper (or that's how I was taught to do it). It quickly becomes something that you just do and don't worry about.
03-25-2015, 09:57 AM   #22
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Thanks everyone for your advice! Just want to take a minute to update you on my progress:
I'm still in the hospital but no longer have the NG () After 24 hours it was rubbing my throat raw and sucking up a lot of blood, Doc said it was not serious but took it out just in case. I've been keeping down liquids and they have me on 40 mg steriods injections 4x a day, as well as flagyl and cepro for antibiotics. I'm not responding as quickly as they would like to the meds and I'm still pretty swollen and inflammed. I have had 2 BM since I've been here, one on Monday and one yesterday, both were diarrhea. We're waiting to see what happens now.

At my last visit before I got here (Friday) my GI was starting the ball rolling on Humira, they said they would really like me to start before I leave the hospital. The sooner I do the better chance I have of avoiding surgery. No word yet on how much longer I will be here or how soon I can start the Humira.

I'm not sure what my levels are right now, Im having blood drawn 2x a day and just last night (at one am!) my IV rejected. it took 3 nurses 4 sticks (and 3 blown veins that are now HUGE purple and black bruises) to finally get another IV going.

I'm trying to stay positive but on top of every thing I just received really bad personal news and I'm trying to not stress about it. I just want to get better and go home.

I will update you as soon as I hear more, thank you all so much for your kind words and support.
03-25-2015, 10:06 AM   #23
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Thanks for updating! Sorry to hear that you have had bad news. It is really hard dealing with life and Crohn's.

Starting Humira quickly sounds good and it's good that you're able to keep liquids down. I hope that the meds do their job and you start feeling better soon!
03-25-2015, 12:04 PM   #24
UnXmas
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UnXmas, if supplemental overnight feeding is something that you think might help you then I think inserting your own NG tube is well worth trying. For me it was a much less frightening and uncomfortable experience than having a nurse insert it - which I hated.

I felt so much better being in control of the rate the tube was advanced and getting the feedback from my body so I could adjust as needed. And it's nice to know that you can take it out and reinsert when you want.

As to getting it in the right place you measure the length of tube to feed in and when it looks like you have that in the right place, you test for stomach contents with litmus paper (or that's how I was taught to do it). It quickly becomes something that you just do and don't worry about.
I have had overnight NG feeding while in hospital, my digestive system just couldn't tolerate the feed, it went through me to fast to digest it properly, so I wouldn't want it again regardless of who put the tubes in.
03-25-2015, 12:10 PM   #25
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Humira has worked wonders for my kiddo
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03-25-2015, 12:16 PM   #26
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Aiyale - keep going. When I've been in hospital and desperate to get home, I concentrated just on that: as far as I was able, I put other things out of my mind, and just thought about the signs that I was getting better and closer to the point of being discharged. Keeping down liquids and taking new medications are signs that you're progressing. And if you do have a setback, you just go on to looking for the next sign, no matter how small it may seem. It could be getting to have a conversation with your doctor or having a solid bowel movement or an improvement in your blood tests or your first mouthful of solid food - anything that shows you that things can change for the better.

I hope you'll get home soon.
03-26-2015, 12:45 PM   #27
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I MADE IT TO SOLID FOOD! I'm so happy! (soft, low residue, low fiber, but oh so delicious food)

They think I might be able to go home tomorrow. Bad news is that I'm still in a ridiculous amount of pain and the inflammation is really high, but the doctors said at this point there is nothing they can do until we start Humira. So I just have to be extremely vigilant of any sign of a block and stay on soft foods, but hopefully this is my last visit. Does anyone have any advice on how to safely bridge this gap between going home and starting Humira? The last thing I want to do is be back here in a few weeks!

P.S. I will still be on prednisone during this time, but as I've recently learned it's not fool proof and I can still get a block. I also think I will have to finish the flagyl too.
03-26-2015, 01:30 PM   #28
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That's great that you're able to eat some solid food! I have at times with sub-acute obstructions gone on either a liquid diet (EEN) or a mainly liquid diet - lots of soups, smoothies, sometimes ice cream and supplement drinks (Fortisip, Ensure, Boost).

EEN would also help with inflammation whereas soft foods or a partial liquid diet won't but will still help with the pain from the narrowing and reduce the chance of you ending up back in hospital.
03-26-2015, 04:08 PM   #29
The Real MC
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While you are in the hospital, ask to speak to a dietician about bland diet. The goal of the bland diet is to eat foods that do not irritate the digestive tract or generate gas. The more you stay on it, the less likely you may develop inflammation and/or blockage. Not as restrictive as a liquid diet.

Glad to hear you are improving.
03-30-2015, 08:51 AM   #30
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I'm home!
Thank you all so much for your advice and support during this last week, it means so much to me.
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Crohn's Disease Forum » General IBD Discussion » Hospitalized again/ NG for first time
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