Do I Still Flare After Surgery for Crohn's Disease? | Let's Talk IBD
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- Опубликовано: 5 сен 2024
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While surgery can be very helpful to calm down Crohn's disease and other forms of Inflammatory Bowel Disease, it isn't a cure all! I wish it was, though! In this video, I talk about how the lines get blurred when it comes to flaring and how I personally find it hard to tell if I'm experiencing a Crohn's disease flare. Do you experience this?
For 𝐛𝐮𝐬𝐢𝐧𝐞𝐬𝐬 & 𝐜𝐨𝐥𝐥𝐚𝐛𝐨𝐫𝐚𝐭𝐢𝐨𝐧 requests ONLY, please reach out at maggie@redefined-agency.com!
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*This video is not meant to diagnose or treat any illness or condition. This is for entertainment purposes and to get you thinking! Please ALWAYS refer to your physician for medical care.
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Hi, I'm Maggie and I have Crohn's disease. I am thrilled to be here sharing my personal experiences with Inflammatory Bowel Disease as well as living with an ostomy. I'm proud to share a little bit from a clinical experience as well, having worked as a GI pediatric nurse and ostomy telehealth nurse. I am so glad you are here. ♥ #ostomy #ibd #chronicillness
Join us LIVE on Sunday, July 2nd at 4PM EST here! ruclips.net/user/live5LwtklTBBQU
Also, here is the link to the electrolytes I use! amzn.to/3PxpwNq
(If you use this link and purchase, I get a small commission which means... more Nuun!)
I may forget. Even with the "rung bell", I do not always get notified. I will catch the replay no matter how my memory and my iPhone behaves. ❤
Iv been hunting for the right electrolytes for so long, iv tried so many thank you for the link. I really struggle to store nutrients and I'm so fed up being severly deficient in one thing then the next... Like vitamin D in a heat wave 😂😂 Thank you! Your videos somehow make me push on x
They should have an option to add a symbol or identification on the ticket (concerts, games - football, soccer, baseball - graduations, etc) for individuals with a visible or invisible illness. That way, when it’s presented at the entrance, you don’t have to worry about telling a bunch of workers. It would just show you have some medical needs and make it easier
As much as I’d love to keep my invisible disability invisible at events, it’s proven to be hazardous…. I have a central line and run TPN and potassium infusions. I’ve been to a few events this year and I’ve had a situation where one worker checked my bag upon the entrance and forgot to tag my bag as “checked,” every bag got this tag, and because she forgot another worker grabbed my bag off of me and attempted to say it needed to be checked. This bag is literally attached to my heart technically….. I now have a big red tag on my bag that makes it known as medical supplies and that it cannot be separated from my body.
You have every right not to want to tell the whole airport you have medical supplies. My heart goes out to you. You are just precious and lovely and carry yourself with such style and grace.
I hope you feel better and yes, it is so easy for chores to pile up.
Julieann 😊❤
I was one of those who suggested wrist bands for Hershey Stadium events. Events (concerts, conventions, museums) I have attended always have lines for people with backpacks and lines for people without backpacks. That is all any event needs. My disability is also invisible. I am fortunate in that my situation does not require additional equipment. However I frequently take elevators and only do stairs (with a death grip on bannisters) when forced by circumstances. Several times I have had to announce my disability aloud to people who felt they had to chat at the top of stairs next to the bannister. Definitely contact Hershey Stadium before going there again. At least send several emails to as many stadium departments as applicable detailing the experience. An event attendee who has paid for their tickets, paid for parking and will be paying for food and merch should be treated far better than was done at that Hershey Stadium concert.
I have fibromyalgia I hate having to go into disabled line but I know I just can’t stand in usual long line! Then when I’m in the line for disabled everyone looks at me as if I’m confused and in wrong place as I’m not in a wheelchair! Invisible illness really is difficult at times
I had this exact experience waiting for the disabled restroom at the concert!
I feel the same way I have mild cerebral palsy and I can walk ect
I think I am lucky in that I always know when a flair is happening or beginning. I get sores in my mouth and within a day or so I am down for the count. I have learned to cut back on foods and up my electrolytes and fluid. I have avoided the hospital many times because I knew what was happening.
Maggie. Do you realize how precious you are? I don't know if it's me but just seeing your sunny smiley face makes me feel warm inside. My deepest 🤗 to you. Still hanging in there for your continued health. Zak is perfect for you. Please take care.
I totally understood when you said sometimes you want to be invisible. From a person who has a medical condition and a learning disability. Also a youtube channel..i know the feeling of bein invisible sometimes
Hi Maggie! I had a colonoscopy 2 weeks ago and it put me into a huge Crohn’s and Ankylosing Spondylitis flare which never happened before. Sometimes these autoimmune diseases are very random. I love hearing your experiences. You have a calming voice and you “get it.” Sending love to you and Zak ❤
What medication you are on
I have just been diagnosed with IBD and been suffering so much. Watching your videos have helped me so much. I never have related to anyone this much before!!
Visibility should be your choice, as someone with chronic pain.
I understand how you feel,I had a stroke way back in my mid 30’s and fortunately for me ( if you can call it that )it just affected my short-term memory and left me incontintent , I do my best to keep it on the DL; but I still get the side-eye when I go thru a security check point with my supplies
Yas. Scar tissue. I have bloating and cramping still sometimes as well. Not to mention the anxiety that you will have strictures!!
I think that they might have said that because, if security does not know the exceptions like a bigger bag for medical supplies, then why have those guidelines. I am a little shocked that security did not even think to ask and just blurt out no. Though if they have never delt with that before, I can see why they did it so poorly.
Thank-you so much for the link for electrolyte site😊
Thank you so much for posting this Maggie. Hearing blow by blow how is feels for you when you go downhill was so affirming and I'm sure there are so many of us that relate. Coming to terms with often not being able to pinpoint the exact reason we are feeling so generally unwell is hard. I don't feel so alone or weak when I hear you going through the same things as I do. I really appreciate your openness and honesty! Keep em coming! 😊
I have an autoimmune disease and similar issues when I have a flair. I also think I may have IBS or something similar because my BM give me all kinds of issues and before I was on a biologic my life revolves around knowing where there was a restroom. The exhaustion, pain and nausea during a flair.
Glad you are feeling better ❤
I am sorry that you were ill and so glad that you are feeling better. I am having to remind family and friends that there is no cure yet for Crohn’s. Treatment, new medications and surgeries can help relieve symptoms or problems caused by Crohn’s, but will not cure it. Even in medically induced remission, it does not mean that you are cured, just that you may not have as many symptoms. At 55 I was diagnosed with mild/moderate Crohn’s in the fall of 2020 and have moderate/severe now. I have an ileostomy as of fall 2021 due to having a fistula from my bowel to my bladder and will be having my first big abdominal surgery later this month. (Bowel resection to remove the fistula, full hysterectomy due to adhesions from fistula and Crohn’s, fix bladder, move stoma and fix large parastomal hernia). I am having to repeat to family and friends that this will help me with some issues, but I will not be cured or returned to pre-Crohn’s life. Do they ever finally understand that a chronic condition is lifelong?
I have what you have. But I'm 72 and dealing. Had nausea, stomach ache, felt weak last 2 days. Also diarrhea during night. Where do you get your electrolyte packets. I feel I need some. I do dehydrate easily. Also retired nurse. God bless you and Zac!
Sometimes you look just like Princess of Wales, Catherine Middleton !!
That sounds awful! Do you get a lot of gas? It can present as extreme fatigue, stomach pain and sometimes even headaches. Gas seems to end up being part of most of the times I'm not feeling well with my ileo. Same surgery situation as yours. OTC Simethicone or gasx have been a lifesaver for this!
Also, have you tried liquid iv? Nuun is pretty good, but at least for me liquid IV seems more effective. Just in case you want some other options to feel better! I'm glad you're getting real IV fluids soon makes such a difference! Thank you for having this channel. Hope you feel even better soon ❤
Happy Father's Day, Miss Maggie.
Anyway, I think sometimes it could feel uncomfortable with flare after surgey or wound...
Identification or symbols could be made as medical needs in advance.
Thanks for sharing. Take care
I wouldn’t want to separate line for people with disabilities either know I have a very physically obvious disability as well as a couple of invisible ones. When I am out at events, I like to be not having to think about being a person living with issues as much as I can. I also shout about my disability on the Internet, but it’s my choice when and where I choose to do that. Sometimes I just like to have a time off
Separate lines or identifying medical needs/disability is a form of segregation/othering. Even for me, who uses a wheelchair, I don't like separate seating that is suitable for the size of a wheelchair, which I actually need, because then it becomes "the space for me" and others see it as not for them unless they are with me. It sucks and takes away from the experience. It also enables people to treat us badly or at the very least differently. For those interested do a little research on ugly laws because it was very much illegal at one point in history for those with disabilities to be seen in public.
Your makeup is perfect. Xx
Hi Maggi, just thought I would share my experience with dealing with Crohn's, I get that same stomach pain too, It feels like a dull achy pain, I told my doctor he ran some tests and found there is inflammation in the lining of my stomach from something I ate and go on a very plain diet until it settles down, can't take anymore meds as I am already on imran and infliximab, hope you are feeling better ❤
Is there such a thing as too much electrolytes? How would you know if you overdid it on those? Not looking for medical advice, just curious.
I’ve lived with lupus since 14 and have RA, sclerderma Hashimotos, pulmonary fibrosis. People think you look pretty good for someone whose sick. They should only know the pain and feeling so sick you pray to die. When in a flare life is so difficult. I love your eye shadow and would love to know what it is
I have been through hell with pain. Sending hugs and love.
I personally avoid large gathering even though I don't have medical condition that I need to carry supplies just an county boy don't like crowds or driving in large city or freeways
In all reality, you are doing very well given the whole picture. Just curious have you tried IVIG (intravenous Immunoglobulins) infusions for your crohn's ? Can you take a portions of the electrolyte's every day ? You are such an inspiration !!!!
I have not! And I take usually one tablet of Nuun in a glass of water every day, but increase it based on how my ostomy acts!
Do you have a favorite flavor of the Nuun tablets? When I'm having a POTS flare, I need to do a high intake of salt. I've been using the Liquid IV, but I wanted to branch out if Nuun has good flavors. I'm glad to hear you are on the mend!!
I really like Triberry, orange, citrus fruit, and pink lemonade! Those are probably my favorites!
Thanks, Maggie!!
@@LetsTalkIBDma'am which position to sleep in with this I have this disease for 3 months😢 I just lay on my back facing up it flare up more
I am paralyzed as well with gbs 😢
I agree with you. My invisible illness is not something I want people to know about. I just wanna be me.
Hi Maggie my friend Rachael has chrons disease
I have gastroparesis and get very severe bloating. My abdomen hurts constantly. It’s quite frustrating. I can’t take the medication for it because I have several neurological disorders. I have been dealing with digestive issues since I was 22. I’m in my mid 50’s. I’m done and want it all removed. My GI says that’s not the answer.
Try vegan diet. It can't hurt and could significantly help.
I had a pyloroplasty for my gastroparesis and it significantly helped the bloating and a lot of it
🤔 I wonder if it would ever be possible to transplant the gut from one person to another or if they could grow a small bowel right through to the rectum in a lab. They are advancing so fast with this sort of thing makes me wonder if some scientist might one day look into this.
To have " normal" bowels would be absolutely wonderful.
Can I have some more info regarding the electrolytes supplements?
Do you have to take them all the time or just when you decide to stop eating for a while?
And do you feel something if you have low electrolytes? So do you know it when you need them?
Sorry if I asked too many Qs 😅
I drink them nearly every day, but usually just a glass a day! If ramp it up if I notice my output increasing - usually I feel tired, thirsty, dry mouth, and have a headache!
@@LetsTalkIBD
Interesting..
I've had an ileostomy for 5 years now due to Crohn's and no one mentioned this to me ever nor did I have any of the symptoms you mentioned
I'm gonna have to discuss this with my doctor..
Anyways.. A lot of the stuff you mention is so relatable to me.. I was diagnosed in 2011 and had a total proctocolectomy with a permanent ileostomy in 2018 after all meds have failed.. So "No colon but I keep rolling 😂"
Thank you so much Maggie for sharing your stories.. you are awesome ! keep inspiring 👍🏼
I know when I start to flare my skin gets rashy and a recent MRI showed either a stricture or active crohns
I just wanted to suggest you just try meditation session..will help u so much
Hi,Maggie, To what extent do you feel that your ostomy is part of YOU? There are times when you use the plural "we", and it isn't clear who's being referred to. Dave
Hmmm usually I see "we" if I'm talking about Zak and I, but maybe I've started saying it for Leroy and myself as well!
What is the brand of electrolytes do you use? Please
They're Nuun Hydration tablets. They dissolve in water. I use the ones that have some extra vitamins in them in addition to the electrolytes.
There isn't any poss way for me to budget in ANY electrolyte drinks, considering I drink a gallon and a half plus of water on a regular day and two and a half on active/hot/sweaty day. $2 a pack 😅😂😢 multipled by each 16oz of liquid. Yeah.... my fruit smoothies and ensures run me $250 a month alone. That isn't including any prebiotic, vitamins, ect. Like.... wtf lol... guess I'll just work with my pomegranate, cranberry, beat, salt, and water mixture will have to do.
Isn't that too much water? A gallon and a half would dilute all your water soluble vitamins. You probably need electrolytes tested! Deficiencies in electrolytes can cause extreme thirst, which makes it worse.
@mygirldarby well it's not to much for my individual circumstances and when conditions appropriate act consume even more liquid. I only have a stomach and small intestine like all people with ileostomy. Remember, the small intestine may be on a 22 ft long and an inch wide at most on the outside diameter. My stomach and small intestine is the only place my body holds water. So yes when it's 90° out and I have to mow the lawn, do vigorous house work, or any other strenuous activity my body absolutely drains what moisture there is through my stomach or small intestine. Side note, I rarely ever drink straight water without it being supplemented
Small bowel resection can cure chrons???
Medication is better than surgery??
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I really miss you
Maybe it was too much noon
Why did my comment and question disappear 😢
I'm sorry! I checked the filtered comments from RUclips and don't see it there, either!
It was quite lengthy. About my experience with Crohn's and my ostomy. 😢 I am 67 yrs old and lost my husband of 38 yrs last year. Now I have no one so thought I'd reach out to you. I guess it wasn't meant to be. Thank you for responding to me. Have a wonderful day, Maggie. 💜
🌼☀️
Maybe you need to wear ankle weights to keep your weight up there.