Short Bowel Syndrome & High Output Ostomies | Let's Talk IBD
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- čas přidán 18. 05. 2022
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Happy birthday! I've had my ileostomy since 1978 (I was 19) for UC and having been there a long time, I wanted to pass on some knowledge I have acquired:
- You can't really know that you don't have short bowel syndrome, since it can take years for symptoms to manifest. Given the amount of bowel you've had removed, you need to watch very carefully, because today they tell you that you don't have it, but tomorrow they could say you do.
- One symptom that you didn't mention that I have (periodically) is bacterial overgrowth in the bowel. This can cause pain, soreness, diarrhea, nausea, feeling like crap and other things. I have to take a course of antibiotic when this happens.
- This in particular: it can cause kidney damage slowly over time. 15 or 20 years ago I found out that my kidneys each had 50% function, so I'm like somebody with 1 good kidney. I didn't want to lose any more, so I listened very carefully to what the nephrologist had to tell me about lifestyle and diet, and have almost as good a function now as I had then.
So, I asked him why did he think this was happening to me, and he said that, given my history, it was almost certainly a result of short bowel syndrome (something I have never been officially diagnosed with, but I have the symptoms so...). So WATCH THOSE KIDNEYS - make sure you get a good workup at least every year! Staying hydrated turns out to be a big part of this!
Take care!
Jeff, who will be 64 in July
I’ve had stomas since 1977 for Crohns had six resections since then and now have short bowel syndrome roughly 4ft of small bowel left no colon. I’m really struggling to stay hydrated and also have chronic kidney disease due to SBS. My Ileostomy is active watery output all day long I empty my bag up to 24 times a day and 3-4 times during the night I don’t want to lose any more bowel, my Crohns is flaring again the Adalimumab stopped working now going to start Ustekinumab so fingers crossed it puts my Crohns back in remission. Life’s s**t and then some. Stay well IBDrs.
@@chrisarnold4626 I wish you the best, my friend. In some ways I guess I "lucked out" with UC because once your large bowel and rectum go, there's no more possibility of direct intestinal disease. But man those complications! I'm sure you remember in the 70's nobody even heard of autoimmune disease, so hopefully they have better stuff for you now. Two weeks ago I had surgery to remove a kidney stone I'd had for THREE MONTHS due to insurance problems. So, they always find a way to get you.Take care!
@@tumunu hi how are you doing recovering well I hope. Yeah no one had heard of Crohns or Colitis and to even have a stoma people would say what? what do you mean a bag to poo in. Did you have a stoma back then the bags were terrible stick to the skin with a brown gooey stuff think it was called Korya seal if weather was cold it just fell off or if you sweated it just slowly came away from your skin leaks were an every day thing skin was always sore. There was nowhere to turn to for help back then what was a stoma nurse. Thank god for social media, communities, stoma nurses etc. and the bags now are way superior to those bags years ago. Stay well mate.
@@chrisarnold4626 Yes, the march of progress. They were called ET nurses (for 'enterostomal') where I lived. It was from them that I learned how to really take care of the peristomal skin, who were basically screaming "why are *we* being punished?"
Back then, we used a large HARD plastic disk, with a hole in the middle, completely rigid, and cemented it to our skin. With cement. I'm pretty sure the "adhesive remover" was just kerosene in a jar. It had a flange that you'd attach the bag to with a piece of rubber. Think large rubber band, but straight, maybe four inches long. Ah well. Stay healthy, my friend!
OK I know this video is from a year ago and so you probably won’t even see this comment but I was randomly watching your videos cause I looked up a certain subject and you talked about getting a RX for loperamide even though it’s over-the-counter, go through my insurance, they prescribe it all the time! I thank God for your videos! I do have short ball syndrome, and I am up frequently at night and suffer from fatigue due to lack of sleep. So I am very excited to start doing this before I go to bed so I can actually get some rest. Thank you so much for this video.
Hi I’m Lori K. I’ve recently had surgery & have an Iliostomy, due to neurological conditions in my back and the whole circle around my lower back & stomach/ colon/intestines slowly became paralyzed due to neurological damage from the waist down…. I finally knew I had to have the surgery that I said “NO” to for 17 years and many different GI Doctors, so I didn’t know anything about the surgery or after. By the time I saw my gastroenterologist he said go to hospital now for surgery. I looked 12 months pregnant & hadn’t been eating for around 9-12 months except Hagen Daz coffee ice cream, but I said I need a little time & need to talk to the surgeon first ( about my disease & disability due to it, which is bad enough that I’ve been medically homebound for over 17 yrs… So he called the female surgeon mediately for an emergency appointment. When I went to see her I needed to talk so much about what was wrong with me and what that would mean being in the hospital that I never got to find out anything about the surgery or after the surgery? She normally sent people to an appointment that taught them I guess the things that you should know and I couldn’t do that so I came home really knowing nothing. I couldn’t even change my own bag so I had an in-home nurse every two days for three months and then I was left on my own. I was wondering if you could help me in some direction, and I can tell me what I should be eating when I should be eating they said six meals a day small. So breakfast lunch and dinner and three snacks but all small and I have an eaten anywhere near normal for over 20 years so I don’t know how or when or what that could mean??? So I was hoping you could help me with the knowledge you have of what time of day I should eat and what a meal with it look like or what Emile could or should be with an ileostomy. I became completely dehydrated. Very seriously the first time the other day and the pain was so bad, but even with how bad things are and how often I am in a doctors and short quick tests or whatever the hospital I will not go to the hospital unless there’s a bone sticking out the side of my leg or I need emergency surgery so I am smart enough that I was able to fix the problem myself and I feel much better, but because I don’t know when or how do you eat? let alone what times to eat. I have so much fluid coming out in my bag all day every day, and I have an area where they sewed the stoma that is completely indented and no matter what I do the fluid leaks under that the second I change my bag and of course burned me badly! So I watched a lot of your videos. I am so glad I discovered you. You have given me more information than I ever knew it was information didn’t really nobody has told me taught me anything and I’m alone in the home and can’t leave and I’m disabled enough that I’m speaking that I can’t type, or sit there and try to look things up or whatever like other people can!!!!! it’s just really nice to found you. I’m so sorry for what you go through and what you’ve been through and honestly it scares me but it’s helped a lot. I was hoping I could ask you about the eating part and even if you can just put me in the right direction it’s so weird feeling like I have to ask somebody to teach me how to eat again and to eat with an ileostomy? All they said was the 6 small meals a day & a bit about what not to eat, but not understand I haven’t eaten anywhere near normal for 20 years & I didn’t know how to say I need someone to teach me HOW TO EAT AGAIN, but not 3 regular size meals a day, but 6 small??? Thank you for putting yourself out here on CZcams! I’m soooo greatful!!! Your the only person who mad me “finally” feel somewhat comfortable to change my bag & not shake & tremble & freak out! God bless you for what you do for me & so many people❌❤️❌❤️👍❣️😉❣️👏👏👏❣️ You are in my prayers now🙏❣️😉❣️❣️❣️❣️
You’re so awesome and you’ve been so helpful to my dad and I. He lost a lot of weight and you really inspired us and gave us a lot of info that we didn’t know!
My dad got his colon removed and suffered with complications. His colon was extremely inflamed and he was suffering with ulcerative colitis for 2 years prior. It was very aggressive in his case. Unfortunately, his rectal stump camp apart into his abdomen so they brought it to the surface of his belly by creating a fistula. Then he sprung a leak in his small bowel. It was accidentally created by a heated tool while removing the colon. But while they were in there they fixed another area that was thinning. 3 emergency surgeries in 5 days and we can say our dad is a living miracle! God is good! The surgeons were amazing and my dad even calmed them down during the 3rd surgery. He said ‘find the hole!’ and reassured them that he was confident in them. Also, he had sepsis twice. It was crazy. I slept by his side and on various surfaces in the hospital for 5 weeks lol
His case was definitely not the norm. I think it was something like 4% of people have his first complication. It’s important to stay on top of symptoms and if a doctor isn’t listening to you, then don’t give up. Keep looking for another one or a walk in clinic. His first doctor refused to give him any medicine and then he found a really nice doctor who put him in humira right away!
Anyways, God bless you for all the work you’re doing and we will be praying for you to remain strong and healthy. You are doing a wonderful service for the world! ❤
I’m getting rid of my high output ostomy soon. I can’t wait.
I have a question for you... husband is preparing for an ostomy... When you mention larger overnight bags , how long will the larger bags last you generally? He is concerned about frequency of changing bags during sleep and also during his work. Perhaps you could make a video showing different bag size options and tell us how long they last you/ which you use for different situations/pros and cons etc
Happy Birthday Maggie. Thank you for this information, it helps a lot.
Happy Birthday Maggie! This video was really informative! Hope you had a great night. 🎉🎉💖💖
Right up my alley! Thank you for sharing.
Happy Birthday Maggie and best wishes always!!! 🎂🎈🎁🎈
Happy Birthday Maggie!!!🎂🥳🎈🎉🥂 May God Bless You with many many more!
Happy Birthday, Miss Maggie.🎂
Thank you for sharing your experiences on syndromes and ostomies.
Happy, Happy Birthday, Maggie! I hope that you had a wonderful birthday!
Happy birthday Maggie. God bless you.
Happy Birthday Maggie! Hope you’ve had a great day!
Happy Birthday Maggie!
Happy Birthday Maggie! Hope you had a great day!!
🎉🎂🎈
Wishing you a Happy Birthday! May you a have wonderful year! 🎂🎈🎉🌻
Happy birthday! This is a great video! As a dietitian and graduate nurse, I love learning from patients! I believe that health care providers can provide better care by listening to the stories of patients and people who live with an illness. Thank you for sharing your experience
Happy Birthday! Thank you for the video. After several resections and gall bladder surgery I started getting kidney stones yearly, I now have to have hydration infusions along with Mg.
Living day to day for the rest of your life with such a serious disability is more than amazing on your part.
I had way less sickness with open heart surgery and I got so depressed and my recovery was extremely hard and I didnt feel like living. I dont know how you stay so positive like you do. You are such a beautiful soul. So strong and so brave.
Happy Birthday Maggie. I’ve also had to contend with much higher ileostomy output - very watery - for no particular reason. Anyhow my surgeon has prescribed BOTH loperamide AND Lomotil to be taken prior to meals. I’ve been on these meds for 5 years and they are a lifesaver.
Happy birthday Maggie; have a wonderful day. This was a great video, thank you. As a fellow ostomate who has struggled with gastroparesis for years, it’s always interesting to me to hear about those with the opposite problem. Neither is better or worse, but it’s interesting to me to compare the two and see how we cope with diet, medication, and surgical intervention as necessary. I’ve also struggled to gain weight and have used central line TPN at various points in my life. I’ve been on IV antibiotics for months, and everyone assumed I’d have issues with liquid output as a result, but nope. I still struggle with the gastroparesis. I don’t think most people understand just how complicated the digestive system is and how easily it can be disturbed, which can lead to catastrophic results.
Happy belated birthday. Hope all is well. That book is a lifesaver. I got my mom a book as well when my brother moved back home. And he has a pic line as well. He has had up and downs with having to have tpn and an ileostomy. Right now we are on the up side and I say we , when he goes through it, we all involved go through it with him. With him being so young having these complications after a stroke at 28 its heart breaking. He's very tough, having open heart surgery the day after being born. I try to learn as much as I can to be there for him.
Are you doing well? Prayers for good health and love
Happy Birthday, Maggie!
Happy happy birthday Maggie!!
Happy Birthday, Maggie! As a pediatrician I find really helpful all your "insider" comments on SBS and just EVERYTHING else😍. Some years ago I read that carrot soup would really help with dehidration from diarrhea (kind of counter intuitive for me at least), and I just can't remember the exact explanation, but it even was a cultural thing in some countries and was found to be scientifically correct. If I can find some information I'll link it. Greetings from Argentina and thank you as always.
So insightful! Thank you very much! 😃👍 Hope your birthday was super great! 🎂🥳🇺🇸
Hope you guys are doing ok. No videos posted in 2 weeks. Maybe you're on a relaxing vacation! ❤
I was wondering the same thing, as miss the uploads
I hope she is okay. It has been a month.
Great info. Thank you.
Happy Birthday Maggie!!!
Thank you for your advice it will help me manage my crohns😊
Love your videos. I have short bowl syndrome because of colorectal cancer. I use that same high output ileostomy bag. What Has helped my watery stool is OPIUM TINCTURE. It works great.
Happy Birthday dear Maggie. A big kiss to you and your family. 🖐🖐 from Italy.
Happy Birthday!
Happy Birthday Maggie!! Hi Zak!!
An excellent video Maggie. I have mentioned before that after many years of digestive problems I was finally diagnosed with Ulcerative Colitis at age 54. Thankfully I have been in remission for most of that time (I am 65 now and have a daughter a little older than you and a 29 year old son). Although I continue with a low dose Mezalazine tablet daily I believe my whole food plant based diet has also been of benefit. When I was looking to eat more plant foods I moved to plant milks, soya yoghurts and vegan cheese. I am also a big fan of potatoes and I wonder if you would consider investing in an air fryer so that you can make your own French fries but with reduced oil. Thanks again and sending best wishes from the UK. PS Happy Birthday for yesterday!
Wishing you a Happy Birthday Maggie, thank you so much for this video as it relates to me, as I have a high output fistula, and i have a short bowel, had operation in 2019, and for over a year, no fistula, put on weight, had my life back, and then it started up again, in 2021,cand lost weight, limited to what I can eat, everything goes in my ostomy bag, don't have a ostomy, but have the bag set up, so this information is going to be a life saver for me, so, so grateful to you, plus I love food, but hate anything sweet, love savoury, salty foods live, take pink himalayan salt, hydration is a big problem, will try this as I go to the bathroom as normal, must try and order book, as I'm in Ireland 🇮🇪, hope this improves my situation
Happy birthday, Maggie
Happy birthday Maggie 🎉🎊💐
Been a while since I have seen anything from y’all! I am praying you are fine and just busy or taking a break from filming!❤️
Happy birthday!!!! I hope you had a great birthday.
Happy birthday! ❤️ 🎂🥳🎉
Happy belated birthday!!! 💕
I knocked on wood for you, Mrs Maggie. Thank you for the informative video.
I hope you had a great birthday Maggie xxx
Happy birthday! 🎂🎉❤️🎈🎈😸
Happy birthday to you! 🎉🎂🎁🎊🎈
This is a fantastic resource! As a person not yet diagnosed with IBD I find this valuable to help me stay healthier and hopefully not have any bowel removed 🤞I would really really like to eat broccoli and spinach again someday 🐨
Happy birthday girly
Hi Maggie, like I mentioned before, I was diagnosed with an Ulcerative Colitis in October 2009. I'm still on Asacol 800 mg 2 times a day. I'm in remission for 8 years now.
Happy birthday!
Happy belated birthday Maggie
Happy birthday Maggie
Happy Birthday 🎂 🥳 🎉 🎈 🎁 🎊 ❤
Happy birthday 🎈
This was a great video, thank you! Fascinating that French fries don’t bother you but fried fish does. I would have thought results would be related to something being fried, but apparently not. Very interesting. Hope you & Zack are ok and just having some time to enjoy the farm :)
Happy Birthday
Seconded!
You said in this video that SBS is pretty common; however, SBS is considered a rare disease.
Most informative video I’ve ever seen, I have an ileostomy + 2 small bowel resections (Crohn’s & Colitis) I’m dealing again with adhesions that are now causing enough concern that I require a 3rd resection very soon.
I have very high watery output 1700mls daily, Im taking 60mg sustained release morphine that has little effect on my output. I’m wearing the exact pouch (coloplast high output pouch) which I have to wear all the time. Due to the length of time I’ve had my ileo I’ve lots of experience looking after my skin looking skin around my stoma. I’m in UK so unsure if I can get hold of these hydrations products
I’ve an appointment with a dietician next week due to recent hospital admission (obstruction + NG Tube) I’m to be put on Elemental diet so obviously worried. My doctor told me I don’t require IV B12 as I’ve had my stoma for 23yrs. Saw a consultant & is very concerned. I just wish I could talk to a person such as yourself because you absolutely know what your talking about. Thank you, Adele 🇬🇧 x
Hope all is ok 🙏🏻
You have covered well Maggie happy birthday from me and my family in newzeAland
Happy birthday.
Great information thank you 🤩🤩🤩🤩🤩💖💖💖💖
I hope your ok!
Sending Love and Light ~ ♥️✨🌟✨🙏🏼
Yay!! You love science!!
I've had my ileostomy for about six months and the biggest game changer for me was switching from regular loperamide to instant loperamide. Also introducing more soluble fiber, for me it was porridge oats with oat or rice milk.
I had no idea that there is an instant loperamide! I take the regular one 2-3 times/day as a maintenance dose because of all the surgeries and resections I've had. Some days even the maintenance dose just isn't enough.
Before my ileostomy I was taking 8 regular ones per day, so there may be a bit of leeway, speak to your dr though.
After my ileostomy I found that I would see the loperamide capsule in my ostomy bag. So my consultant changed my prescription. The only downside is they are more expensive if you have to purchase them yourself.
Instant loperamide I’ve never heard of it, I’m on 7 capsules 4 times a day and they still aren’t doing anything, I will be asking about instant loperamide next time I see Gastro specialist thanks for bringing it to our attention
Happy birthday hope u had a great day
I’ve always been warned about short bowel syndrome. I have crohns and had a lot of small intestines removed twice. Then I had this weird flare up and a structure fixed to see if it would help. After that surgery, I was left with going to bathroom alot and incontence. I’m 35, and always have to be close to a bathroom. Now GI is saying it most likely short bowel because my Crohn’s is under control. I’m a hard one to keep in remission and being in remission but having so many BMs and other symptoms is so disappointing that it’s now something else. Now we are in talk of a ostomy. I’m ready to live again!
Happy Birthday and hoping the day was a good one and wishing You many Many more years ....... ⚛️☮️ 🎉 🌏
Happy Birthday, Maggie! Hope you have a terrific day!
Ok. Not try to be a pest... But it's been 4 weeks since last video. Hope Maggie is ok. And hope Zak is ok. Miss you guys!!! ❤
Happy Birthday Maggie! We share a birth month! Mine is the 20th!
Happy Birthday Maggie🎂🌸🙌🏼🎊❤️
Happy birthday
French fries are one of my favorite things to eat when I don't feel like eating and they sit well with me too! Other fried foods, definitely not, but fries are always good.
Video is unlisted btw
Four weeks now. Worried. 🙏🙏🙏🇿🇦
miss you...hope all is well♡
Happy Birthday. Hope you enjoyed a great day. 🎂. My sister has crohns and gastroparesis. She is removing her feeding tube against medical advice. Consistently losing weight since 2/22. Is this common? She has trouble keeping food down as not digesting quick enough. It’s so sad but after 22 years and so many hospitalizations - think what she is done anyone else suffer with the two diseases and dehydration. Yesterday she went back to fluids once weekly in her new port as previous one became septic last month. So sad. Wishing all good health
So hard for your sister, and you too, hope her doctors are trying to do something, to improve things, she will be in my prayers wishing you all the best
I have very water output and everything goes through me really fast, and I use imodium just learned of it in the past 8 or 9 months when I started this new Job and I have always had watery output so love finding it. Also even with the watery output and food moving through me fast I'm still really overweight haha
Hi Maggie. I wish I’d seen this video earlier. I’m having practically everything you have mentioned. I have an ileostomy and an ileal conduit that drains both of my kidneys. So I have 2 stomas on my tummy. I also have short small bowel syndrome. I originally had my stoma done in 2001 but had a major surgery that went wrong in 2017 were I lost a lot of my small bowel. I then lost weight and a lot of it. I went down from 10.7 stone to 5.5 stone. I was admitted to hospital had a Hickman put in and was started on TPN 24 hours a day 7 days a week for 6 months (in hospital) the the last 2 months I was able to have a break. Now I also have to have 2 litres of IV fluids over 12 hours 3 times a week and TPN 2 times a week. I also have kidney failure so my electrolytes are monitored very carefully. It’s very difficult to manage all of this. It definitely is a challenge
Oh man roasted delicata squash dipped in a creamy sauce is so yummy!
Hope all is well.. Miss your videos.
happy birthday
happy bithday it actually was mine too haha xxx
I hope you are doing ok. I saw you haven't been on here or instagram!
I love nuun. What is your fave flavor.
Can't find any link to the book you mentioned about short bowel, need, book badly, please put link
Happy birthday Maggie!
I have a question for you. I have Neuroendocrine Cancer of the stomach. A little higher up from you. We're discussing a total gastrectomy. Lately we are doing further testing since my tumors are very small, and I may actually have an additional condition, Zollinger-ellison syndrome in which case I get other fun treatments. The gastrectomy comes with a list of problems, one of which is dumping syndrome. Is that similar to short bowel? As is common with all gastric NETs, diarrhea is a constant companion. I haven't been able to get a good answer to how similar is dumping to regular diarrhea. I know it's not the same neck of the woods, so to speak, but I guess I'm a rare bird so I ask whoever I can. Hope you have a wonderful birthday!!!
Happy belated birthday!! Sorry for being so stupid but I have a question I want to learn more about this because I have a grandchild that has a stoma! Do they collect both and urine at the same time in one stoma or how does that work? Would you please share or let me know where I can go for more information I would really appreciate it! My grandchild may end up living with me and I need to know as much as I can about stomas and awesome reasons and all that!
Hi Maggie
I am hoping that you are ok , with not hearing anything from you in a while, i am just worried that you are not feeling very well and you are taking some time off until you are back fighting fit . Or you are on holiday taking a well earned break from filming , anyway i hope you are ok and will be back soon . Here's thinking of you both 💓
what about low out put?
Maggie...your birthday is the 18th of May? Mine too!
Are you guys ok? No video in a while. Hope everything is fine. God Bless
Just wanted to wish you a very happy 29th Birthday
Hi! Where have you been? I haven’t seen you on Utube or FB for weeks. Are you okay? Hope all is well.
If I’m in the mood for cookies and have a like cause I just feel like binging, I have a lot of output. With SB does sugar cause a lot of output?
Would the addition of a resin such as cholestyramine help?
I switch between cholestyramine and colestopol (powder/pill) and it does help with slowing down output and thickening it up, but I still have terrible nutrition deficiencies and chronic dehydration because I have had a lot of my small and large intestines removed.