You are something special Beth. What you have to deal with would probably make a grown man cry. We are here with you through this journey. Stay strong as you have been💪
I hope one day soon, there's an answer to EDS, I see the many struggles faced by those who have this condition. And I praise and I pray that you hold strong and triumph over your endeavors. You are beautiful, and I Believe it's from the inside, out. I don't know you, just see your story and it makes me realize how trivial the things I whine about, thank you for being a ray of light, you inspire me
Hi Beth, I came across this video of yours as I'm currently looking into IV lines for feeds, etc. I really appreciate you sharing the knowledge that you have and what the experience was like for you. I have GERD and POTS, etc. However I dont actually have all my diagnoses yet. Im worried as my weight is so low and my body wants to reject everything. I'm finding it SO hard for anyone in the medical field to take me seriously but this has actually made me want to advocate for myself again. Sending love and spoons! 🤲🏻❤🥄🌸
❤❤❤your a star I’ve had a line Fitted two months ago and I’ve also got a stoma bag still coming to Tims with it all and until I seen your video I’ve been feeling so alone I think you’re amazing
When I was a student nurse I used to have a few placements in interventional radiology, so I've watched a few people get lines put in. You are quite right, the pain is horrific! The people I've seen have it done were very uncomfortable to the point where it was hard to watch. I'm glad you managed to get through it because it is one of the most painful procedures to go through, especially without sedation xx
Honestly I was quite shocked about not getting sedated but luckily the nurse was soooo nice and kept talking to me throughout it to distract me and they kept making me smile which made it so much better but it was super uncomfortable!! Fingers crossed I don’t need to get that done for a long long time haha xxx
Just watched your latest video. You certainly are brave to have a procedure without sedation. I admire how strong you are being able to live with tubes. I never knew about all this until I watched your videos. Stay safe n I hope you get back home soon. ❤
Do u need gridlock tape for ur line to keep it from being tugged on they r pricey and I had a bunch donated to be ill send u some if u need the and some port pads I have them too u hook to bra and cushions ur port kinda like a tube pad does
I’m so sorry they didn’t sedate you! I’ve had my Hickman for quite some time and it’s been such a great thing for me. I just had to have the lined exchanged and get seated me for that so I’m not understanding why they didn’t give you anything! I’ll keep you in my thoughts. I’m on TPN for 16 hours a day and I’m on LR fluids I get 2 bags of fluids every day plus I get 50mg off IV Benadryl every 6 hours and I get Entyvio every two months but infusion. I have Chrons severely and I only have just about 2 feet of small intestine ( I have no colon, no rectum, almost half of my stomach was removed and only the two feet of small intestine and my bottom is sewn shut). I have a duel lumen Hickman as am and my lines are both rather long as well. I wish you all the best! I hope things get better for you and that you begin to heal. Stay positive and remember this is very important DO NOT SUBMERGE IN WATER! Taking a bath or shower is ok but do not go swimming nor get into water above your waist for it will cause some severe problems, talk to your physician about this! You look great and I’m looking forward to hearing good things about your recovery.
Your hair is still so thick despite how your nutrition has been😱 I lost a lot from malnutrition so mines unfortunately very thin compared to how it used to be. It is growing back but I'm so inpatient, I just want to look like the old me again!☹️
Oh my goodness I understand completely 🥺 I’ve seen what malnutrition can do to people. The strangest thing is, my hair was never really a problem until the last few weeks! Considering now I’m on TPN I thought everything would be fine, but every time I touch my hair or brush it LOADS comes out and I’m sure that it’s getting thinner! I’m going to ask my hairdresser when I next see her what products might help. Have you tried anything to help? :( really hope things start improving for you really really soon xxxx
@@bethgallery1140 wow, that's so unusual! Maybe it's different for everyone but my friend's hair got much thicker from TPN. I did find the Waterman's hair growth shampoo really helpful - it's a tad expensive but it made a huge difference. Once my nutrition picked up my hair really started getting better, but the shampoo really helped. I also used their conditioner too. It made my head tingle as I think it's got caffeine in if I remember correctly, but my partner noticed a huge difference in my hair. Now I just use normal shampoo and focus on using hair masks to keep my hair moist in this cold dry weather xx
@@bethgallery1140 When I was in hospital for a long time last year on loads of medications and just stressed out on a daily basis, I started losing massive amounts of hair all at once and I really started panicking! A doctor explained to me that your hair cycles are supposed to happen not all at the same time, but when you're stressed or your body undergoes a lot at once, it pauses all of the hair function and then when it starts back up again, it's all on the same cycle and you lose all your hair at the exact same time. When they're supposed to be spread out more for shedding. It will resolve itself. Don't worry! I had a few bald spots and they're completely gone now 🙌
I need ur po box to send u bunch stuff I've had sent to me also please start a amazon wishlist so u can post for ppl to get items u need and comfort item
Aww that’s really kind thank you, you don’t need too though 🥰🥰 it’s in my description. A few people have mentioned an Amazon wish list before but at the moment I feel as though I have everything I need and my parents have been great with getting me stuff and helping me with money whilst I’ve been off work xxx
Ima share u again to my 11k subs they r all supportive of our conditions and I've told them bout u and we wanna help u deserve to have ur story out I'd love to do an interview with u and help get ur story out
is the "thing" placed under your skin called port-a-cath ? I had one this morning and they told me my skin was though :) i had this sort of box over my head too and is placed below the collarbone, close neck. You are very inspiring Beth, Thank You.
I think it’s very similar! There’s loads of different names for them and different types, I think ports are a little different than Hickman lines but think they do the same thing although I might be wrong!
@@bethgallery1140 The chance I have compared to you is that there are no tube going outside of it. Otherwise, Beth, you have my total respect and my total admiration. I can't wait to see a video of you with your James, your adorable parents and brother at home. Merry Christmas to all of you. Alan
TPN is enough fluid/nutrition that my body needs but still using my J to keep my bowel active and putting meds down. Not sure if meds are absorbing but it will be reviewed in jan xxx
I thought somebody else had told me that too but somebody once commented on my Tiktok and said it’s worse for infection 🥺 so would you say to keep the line over the top of your clothes like I did in the video?! It’s soo much more comfortable that way too! Xx
I’m getting one tomorrow and this truly calmed my nerves so much-thank you!!
You are something special Beth. What you have to deal with would probably make a grown man cry. We are here with you through this journey. Stay strong as you have been💪
That’s so kind of you Bill thank you so so much 🥰🥰❤️
I hope one day soon, there's an answer to EDS, I see the many struggles faced by those who have this condition.
And I praise and I pray that you hold strong and triumph over your endeavors.
You are beautiful, and I Believe it's from the inside, out.
I don't know you, just see your story and it makes me realize how trivial the things I whine about, thank you for being a ray of light, you inspire me
Hi Beth, I came across this video of yours as I'm currently looking into IV lines for feeds, etc.
I really appreciate you sharing the knowledge that you have and what the experience was like for you.
I have GERD and POTS, etc. However I dont actually have all my diagnoses yet. Im worried as my weight is so low and my body wants to reject everything.
I'm finding it SO hard for anyone in the medical field to take me seriously but this has actually made me want to advocate for myself again.
Sending love and spoons! 🤲🏻❤🥄🌸
❤❤❤your a star I’ve had a line
Fitted two months ago and I’ve also got a stoma bag still coming to Tims with it all and until I seen your video I’ve been feeling so alone I think you’re amazing
Yes I’m home with my children thank god for the line
When I was a student nurse I used to have a few placements in interventional radiology, so I've watched a few people get lines put in. You are quite right, the pain is horrific! The people I've seen have it done were very uncomfortable to the point where it was hard to watch. I'm glad you managed to get through it because it is one of the most painful procedures to go through, especially without sedation xx
Honestly I was quite shocked about not getting sedated but luckily the nurse was soooo nice and kept talking to me throughout it to distract me and they kept making me smile which made it so much better but it was super uncomfortable!! Fingers crossed I don’t need to get that done for a long long time haha xxx
You’re a lot braver than me! I bawled like a little baby for both my Hickmans lol
Omg girl 😭 it was absolutely not what I expected, much worse and very uncomfortable lol I was just so glad it was over and done with!!
You’re blooming amazing girl! sending love hope you’re enjoying being at home much love ♥️♥️
Thank you so much ❤️❤️❤️
Just watched your latest video. You certainly are brave to have a procedure without sedation. I admire how strong you are being able to live with tubes. I never knew about all this until I watched your videos. Stay safe n I hope you get back home soon. ❤
Aww thank you so much Cathy that’s very kind of you 🥰🥰 I’m actually home now and I’m so relieved! Xxx
Wish I had the confidence to post my stay at salford royal h8,
Do u need gridlock tape for ur line to keep it from being tugged on they r pricey and I had a bunch donated to be ill send u some if u need the and some port pads I have them too u hook to bra and cushions ur port kinda like a tube pad does
Aww thanks so nice of you tysm, my team have just ordered me some! So I will be able to hopefully use them soon!! :)
I’m so sorry they didn’t sedate you! I’ve had my Hickman for quite some time and it’s been such a great thing for me. I just had to have the lined exchanged and get seated me for that so I’m not understanding why they didn’t give you anything! I’ll keep you in my thoughts.
I’m on TPN for 16 hours a day and I’m on LR fluids I get 2 bags of fluids every day plus I get 50mg off IV Benadryl every 6 hours and I get Entyvio every two months but infusion. I have Chrons severely and I only have just about 2 feet of small intestine ( I have no colon, no rectum, almost half of my stomach was removed and only the two feet of small intestine and my bottom is sewn shut).
I have a duel lumen Hickman as am and my lines are both rather long as well.
I wish you all the best! I hope things get better for you and that you begin to heal. Stay positive and remember this is very important
DO NOT SUBMERGE IN WATER! Taking a bath or shower is ok but do not go swimming nor get into water above your waist for it will cause some severe problems, talk to your physician about this!
You look great and I’m looking forward to hearing good things about your recovery.
Girl mine itched too girl it's normal
Omg super itchy!!!!
Your hair is still so thick despite how your nutrition has been😱 I lost a lot from malnutrition so mines unfortunately very thin compared to how it used to be. It is growing back but I'm so inpatient, I just want to look like the old me again!☹️
Oh my goodness I understand completely 🥺 I’ve seen what malnutrition can do to people. The strangest thing is, my hair was never really a problem until the last few weeks! Considering now I’m on TPN I thought everything would be fine, but every time I touch my hair or brush it LOADS comes out and I’m sure that it’s getting thinner! I’m going to ask my hairdresser when I next see her what products might help. Have you tried anything to help? :( really hope things start improving for you really really soon xxxx
@@bethgallery1140 wow, that's so unusual! Maybe it's different for everyone but my friend's hair got much thicker from TPN. I did find the Waterman's hair growth shampoo really helpful - it's a tad expensive but it made a huge difference. Once my nutrition picked up my hair really started getting better, but the shampoo really helped. I also used their conditioner too. It made my head tingle as I think it's got caffeine in if I remember correctly, but my partner noticed a huge difference in my hair. Now I just use normal shampoo and focus on using hair masks to keep my hair moist in this cold dry weather xx
@@bethgallery1140 When I was in hospital for a long time last year on loads of medications and just stressed out on a daily basis, I started losing massive amounts of hair all at once and I really started panicking! A doctor explained to me that your hair cycles are supposed to happen not all at the same time, but when you're stressed or your body undergoes a lot at once, it pauses all of the hair function and then when it starts back up again, it's all on the same cycle and you lose all your hair at the exact same time. When they're supposed to be spread out more for shedding. It will resolve itself. Don't worry! I had a few bald spots and they're completely gone now 🙌
Inspirational ❤
I need ur po box to send u bunch stuff I've had sent to me also please start a amazon wishlist so u can post for ppl to get items u need and comfort item
Aww that’s really kind thank you, you don’t need too though 🥰🥰 it’s in my description. A few people have mentioned an Amazon wish list before but at the moment I feel as though I have everything I need and my parents have been great with getting me stuff and helping me with money whilst I’ve been off work xxx
Ima share u again to my 11k subs they r all supportive of our conditions and I've told them bout u and we wanna help u deserve to have ur story out I'd love to do an interview with u and help get ur story out
That’s so nice of you thank you so much 🥺🥺❤️❤️
is the "thing" placed under your skin called port-a-cath ?
I had one this morning and they told me my skin was though :) i had this sort of box over my head too and is placed below the collarbone, close neck.
You are very inspiring Beth, Thank You.
I think it’s very similar! There’s loads of different names for them and different types, I think ports are a little different than Hickman lines but think they do the same thing although I might be wrong!
@@bethgallery1140 The chance I have compared to you is that there are no tube going outside of it. Otherwise, Beth, you have my total respect and my total admiration. I can't wait to see a video of you with your James, your adorable parents and brother at home. Merry Christmas to all of you. Alan
Will you still run your fluids through your j June or is tpn anough fluid to maintain your symptoms and keep you stable?
TPN is enough fluid/nutrition that my body needs but still using my J to keep my bowel active and putting meds down. Not sure if meds are absorbing but it will be reviewed in jan xxx
Hi, are you home now?
Yes 😭😭❤️❤️❤️
One little tip I got told was to keep the line out of your clothes to keep it away from your tubes to prevent infection xx
I thought somebody else had told me that too but somebody once commented on my Tiktok and said it’s worse for infection 🥺 so would you say to keep the line over the top of your clothes like I did in the video?! It’s soo much more comfortable that way too! Xx