Do I Still Flare After Surgery for Crohn's Disease? | Let's Talk IBD

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?

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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

[LetsTalkIBD]

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[bethnancy]

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

[MrsJulieannG]

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 😊❤

[AusNetFan]

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.

[DaniiHipp]

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!!

[garsu]

Know that feeling of wanting to blend but I never have and at my age now I know it is a gift to reach out to others and help … You are an Angel to so many❤

[mylifewithhirschsprungdise]

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

[judibeth]

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 ❤

[cherylmillard]

Visibility should be your choice, as someone with chronic pain.

[marikotrue]

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.

[pjs]

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.

[frittiesnz]

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! 😊

[JamesBaker-xxjd]

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

[Sandgee]

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.

[karendeakin]

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

[nadinecooper]

Yas. Scar tissue. I have bloating and cramping still sometimes as well. Not to mention the anxiety that you will have strictures!!

[KymPossible]

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?

[catloverKD]

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.

[SandraMiller-eidl]

Thank-you so much for the link for electrolyte site😊

[jennifersnell]

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.