Something I Hate About These Appointments... (A Visit to My GI Doctor for Crohn's) | Let's Talk IBD
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- เผยแพร่เมื่อ 17 มี.ค. 2023
- I just had my follow up with my gastroenterologist to see how my Crohn's disease was doing! I share about our discussion, including results of previous endoscoscopies, ileoscopies, and MRI's. We talked about the potential of being tested for SIBO (Small Intestinal Bacterial Overgrowth) and future scopes. Going into this appointment, I realized with my unique anatomy (don't miss you one bit colon), the pre-questionnaire really doesn't apply to me much. I wish it was a little bit more specific to each person' care. That would help me to prepare for these appointments better!
All I know is we were both thrilled about my weight gain and I am always happy that colonoscopies aren't part of my routine care anymore. :)
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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
I've had Crohn's for 30+ years. I recently, within a year, changed my diet to eating only beef, bison and lamb. It seems to have helped me maintain muscle and weight. I've also reduced carbs and sugars, mainly with the intention of reducing inflammation. Both seem to have helped my condition immensely.
My sister-in-law has IBD but not from Crohn’s. She’s a celiac which has similar GI symptoms and issues. She has found that eating venison helps if she can’t get bison.
@@mcrchickenluvr I know that Celiac is just as serious. However, it isn't a type of IBD xx
Maggie, I am so glad I discovered your channel. I found you shortly after your wedding. I had a temporary ileostomy for four months in 2019 due to a cancer surgery that involved removing a part of my rectum along with the tumor and then having it reattached. The ileostomy was done so the reattachment could heal. Unfortunately, my cancer has returned for the fourth time and my doctor told me this time I will most likely have to have a permanent colostomy. I’m more anxious about this because at least I have experience with an ileostomy and was prepared for a permanent one down the road. Anyway, I watch you because you are amazingly strong and resilient and have taught me more than any doctor! I am glad you are doing well. Enjoy the rest of your weekend.
I pray you find the best treatments and doctors available! Every one deserves that. ❤
I don’t often comment on videos but your happiness made me smile today. It’s great that your physical symptoms are under control but even better that your state of mind has improved so much.
Me too! It's been a great start to my day :D
It is so very important to feel “heard” especially by your GI for a chronie. I am glad that you have found a GI that listens and understands. ❤
I finally got to go a full year in between scopes this February. I was having to get them done every 6 months for the last 4 years while I figured out a new treatment plan. I've officially hit the "treatment resistant" phase of life with Crohn's so my GI does not waste any time figuring out if my baseline has changed. Super fun. Glad you don't have to do any scopes anytime soon though! And glad you like this GI doc! Change is always a mixed bag when you have a chronic illness.
I totally get the humour part. I also tend to joke about serious things and at the drs office. Just a few months ago I went to an orthopedic surgeon about my knee (and also had surgery) and he was all work and no play, just didn't even react to any of my stupid nervous jokes, but THEN I went to the preop consultation and asked if there's anything I definetly shouldn't do after the surgery and with a completely straight face and without any reaction or change in his tone he said "I wouldn't recommend jumping out a window" and just continued doing his things in the computer. It really cracked me up and i really appreciated his best attempt at humour 😅
I love that you said you are going to speak about - SHINGLES! I’m suffering my 2nd bout since my Ostomy surgery Nov 2023! I’m miserable! Thank you I Love ‘letstalkIBD! 🇦🇺
Hi Maggie. I'm continuing to send love and good thoughts your way. I'm so impressed by how freely you share information that some of us would be more reticent to share about our own journeys on our channels. You're an example to follow; I oughta let go of my own fears about "too much sharing". Of course, you post far more often than I do. You also talked about pre-appt questionaires. I can relate to the frustration insofar as my sight difference prevents me from reading those forms. Some doctor's offices know enough to send me the form via e-mail and giving me a link where I can go to access the forms. Others don't think ahead, and I end up feeling stupid because I simply HATE getting help with things I know I can do on my own, when given the right tools. Anyway, best of everything to you and Zach.
It's funny, after all these years, talking about bowel movements and poo come naturally to me, but it is not a normal conversation. After correctly being told to shut up I realised oh yeah you don't talk about that.
Take us to Ireland with you. To celebrate,I cooked corned beef and cabbage in my instant pot. It turned out really good.
And btw,you know you have a good GI Doc when they give you phenergain. I have had it for years and even had gp's prescribe it for me. It takes me years to use it,but if I need it,it's there.
Hello, and good to hear from you again and Thank you for sharing, My sister and brother-in-law live in Ireland, so yes, if you get there, enjoy your drink .Take care. .
I’m glad you found such a great doctor. These days they seem to be not so common. I’ve been blessed with great doctors lately and it has made a HUGE difference. I’ve got a great gynecologist that is going to do my hysterectomy surgery. Even in just one visit he made me feel so much more comfortable about the surgery itself.
Hi Maggie! I am from Alberta, Canada and although I don't have Crohn's, I do identify when you need to get a new GP(Family doctor) or a new Specialist. In my case I have had Epilepsy for 63 years, this was diagnosed when I was 3 years old. I have good doctors for a Neurologist, stupid doctors and my best and greatest one I had for over 30 years (unfortunately retired). Even if they have the previous doctor's info. They still ask and talk like I don't have a clue as to what I live with every day. I am fortunate to have been controlled with medication 95% of the time and a small 5% of the time I may have a seizure. Of that 5%, .75% of the time is what can cause problems, but any new doctor or Neurologist seem to focus on that part and not on the controlled part. I have enjoyed your videos even though I am not living with your disease, but what you have told in your videos is very informative. Praying for your day to day health. 😊
I am so happy your Dr. visit went well. Fatigue is something I have, and my Dr. just kind of dismisses it. It is so frustrating. I love watching your videos. I miss seeing Zac on them. You have such a supportive husband just like I do. ❤
If you are working outside the home, or even trying to work at home, I have found that the best way to communicate illness to my doctors is to say that you can't work. Somehow, that seems to get their attention. Probably because being really sick is the only thing that would keep them from working.
My son had shingles when he was in kindergarten--he is now 42 and everyone tells me I'm wrong that he had chicken pox. He had chicken pox before he was a year old and shingles when he was 5 1/2. The pediatrician said it looked like shingles but if it crossed the midline it wasn't and to come back in two days. He did his research in the meantime.
I’m really glad your appointment went well and you like this doctor. That can make a huge difference. He sounds great! Youch! Shingles…I had Shings once when I was 62 and hope I never get it again! I hope you keep feeling good! 🙂
I love your videos. I don’t have IBD, but I do have Spina Bifida, which has its own set of challenges. I also have difficulty opening the blister packs for medication. I have recently heard about something called a pill ejector. It’s supposed to push your pills out of the foil packs. Maybe that’s something that could help you. Last point: it’s also on my bucket list to visit Ireland. I’m very Irish as well. ☘️☘️
I'm Irish too🍀
Glad to see that things are better for you.
I’m so glad you had a great appointment!! Must be so refreshing!
Glad your having a good day!! God's grace for thousands more, 👍🙏
So happy you had a nice appointment.
I'm so glad you got the phenergan and your doctor listened and was attentive to your needs. I know this must be a huge relief for you and I am so happy for you 💖
I had shingles when I was in my late 40's. They were on my right ear, and the pain was outrageous! My GI dx'd me with SIBO last fall, and even though some of my symptoms crossed over into SIBO, most were related to other GI issues I've already been dx'd with. She treated me anyway. I've seen zero difference in how I feel.
Very glad you like this new doctor ❤❤❤❤❤❤❤❤
I am driving 200 miles to see a specialist on Tuesday , it will be my first visit with a GI sense my ermergancy surgery. I had a ruptured colon , sepsis and a colostomy with a wound vac in August . I am a retired surgical Tech 45 + years and have some knowledge but I am feeling aprehensive about what to expect.
Best of luck with your appointment! I hope you like the doctor.
So glad you found a good , caring , and compassionate Doctor ! For not having slept , you look good !
I have a question I hope it’s not an inappropriate time ~
I had BB surgery on 2/21/23 this year ( had colostomy 3/7/2022)) my BB had a dehiscence a week ago yesterday while I was in an Acute Stepdown Rehab facility after being in the hospital following my BB surgery … the wound is 6 cm deep and I have the have it packed three times a week … I am in severe pain since this wound occurred … I was wondering if you know of anything I can do to help myself heal ? I have a WOCN , PT and OT , and an ostomy and aide set up to come to my home … I was discharged just yesterday.
I haven’t found anyone else whose gone through a dehiscence with this surgery… I’ve been following you since before I had my colostomy last year and you’ve always been so inspirational and open minded and have helped us like bodied people < 😇 , I was hoping you might know of a site or page where I can go 🙏🏼
I always look forward to your videos and your content is so honest . I appreciate you !!
I absolutely agree with the template idea. I always bring in a brief history of my probs to remind them, and then some bullet points about what I want addressed. They often appreciate this since I have a long file!
Glad the doctor appointment was productive and helpful. I like a doctor who treats me like an adult, listens but keeps "small talk" to a minimum. Definitely make that medical template as an assist to manage those long annoying questionnaires that I also run into frequently.
For OTC loperamide what I do is cut along the sides of the card with nail scissors, just along the plastic to open the little window, then open the paper from there. My hands shake the worse the diarrhea is, and without really sharp scissors I can't get to the pills. I hate those packages!
Maggie sending you love and hugs 💜
Go to Ireland. It was my dream too. My dad was of irish heritage and never got to go. I did have Guinness there and I don’t drink much beer. It was grand. Funny thing was we were in Cork once, in a pub with a lot of locals, we were drinking Guinness and they were drinking American light beer! I think it was Coors. 😂
Great video. Glad your appointment went well🎉. I had my first round of shingles when I was 30 then had it again at 36 (on my face) so not fun. I have since been double vaccinated and (knock on wood) never had it since. Looking forward to seeing your shingles video.
Glad that your appointment went well. Although I trust my GI doctor and the appointments are ok I still hate those appointments. I do not feel this way about other Dr. Appointments. Oh well…Take care of yourself….❤
Glad everything went well at your appointment. As a person with MS I hate going to the doctors never know what they want to go through next.
I send you strength as I understand a lot about MS. My eldest sister had it.
@@marynamurray9385 thank you, the best to your sister too, I went 53 year's without knowing I had it. Sometimes I wish I never found out I did.
Anxious to hear what. new doctors sags. I see a new oncologist Gastro 500. Miles away.
Hello Maggie and I am so pleased that you are doing well.
I was diagnosed with UC thirteen years ago and I gradually changed my diet to whole food plant based meaning I excluded meat, eggs, dairy and fish. I did this in the belief that all plant foods are anti inflammatory but animal foods are pro inflammatory.
I have been in remission for about ten years and my only medication is a low dose non steroidal anti inflammatory tablet.
It seems that adding meat to your diet has helped you and perhaps the pro inflammatory nature of animal products is less problematic than previously thought?
I hope you continue to do well and I look forward to your updates.
Take care and sending best wishes from the UK.
Ya need a sense of humor and sometimes, a laugh from the absurdity that we can experience. If not, things get too hard to deal with. I was a body part early on to my initial proctologists until one day I was so sad and sick and angry and called one of them A$$hle. I got my sense of self back realizing I what I called a man who deals with butts all day. I take my health seriously but I know I have to use humor for most things. Glad everything is doing well, Maggie. 👍
How are you feeling today ❤️
@LetsTalkIBD
*_Maggie! You're famous!_*
So, I responded to the link in your video description and I requested a sample. Then they actually called me the very next day! The gentleman that I spoke with was absolutely lovely, just as you said, and he answered all of my questions-- in a lovely accent, too-- and then said that the samples would be on the way.
At the end of our call he asked me where I'd heard about _Ostoform._ Naturally, I told him that _"there is a sweetheart of a TH-camr (and other platforms) _*_@LetsTalkIBD_*_ who has shared and demonstrated exactly how the product works, how to use it/place it, and how to request free samples."_ He promptly replied, *_"we really love Maggie here at Ostoform, as well!"_* I didn't tell him your name, but he immediately knew who you were. I'm sure that there are many other companies who know your name, too, so I shouldn't have been surprised. I firmly believe that there countless of us random people who feel like you are a trusted and true friend.
So, the product. I was totally sold on trying the appliance because hopefully it will save me from one of the biggest problems that happens with my Ostomy on occasion, even after all these years, and I was so excited when I received the samples in about 5 days. So far, so good, and I'm loving it. Hopefully my insurance will cover them since I forgot to ask what they may cost out of pocket before I even tried them.
Thank you so much Maggie for sharing this product, and also sharing so much information that even an "old pro" such as myself is finding out new things about my body, my relationships, and even some techniques that I didn't even know that I wasn't doing efficiently, and most importantly, how to not feel so horribly alone. Bless you Maggie, and of course Zak as well. ~Peace!
Thank you for this video, can I ask you some more questions?😔🙏
So, here's a question you may or may not have had before.. but you mentioned "Gas" and I thought to myself, how does a person in your situation actually "pass gas", other than belching. Ignore if too personal, lol.
Through the ostomy. It just fills up with gas, instead of fecal matter.
What @kristiKoll said! The bag fills with air like a balloon and you have to let it out the same as you do any other output. Gas is one of the worst enemies of an ostomy though so ostomates are encouraged to try to mitigate it by avoiding foods that cause more gas.
Can you provide feedback to the practice to see if they can develop an ostomy specific form so that you can answer relevant questions. Even if you developed one your self and proposed working with them on this might benefit them and you.
As one with UC and full set of GI tract stuffs. I need the BM questions, you, not so much as what constitutes output is different.
What makes phenergan one of those medications?
Go girl 👧 🌹☺
Hey Maggie! 😊 I have a question, I’m in north GA and I’ve been really trying to find a GI that really knows about IBD . I have crohns, I just feel like my current GI ‘s are not really listening…. If anyone knows of a good GI this way would be great! And any GI switching tips would be appreciated. ❤
Were you nice to six months from now Maggie?
Hi Maggie.I saw your video last week.I remember you having nausea but no vomiting, just the dry heaves.
Did I miss that vlog?
In the vlog I had mentioned I vomited once, but since I didn't have much to throw up, it was mostly just wretching!
@LetsTalkIBD thanks Maggie, thought I may have missed it.
☀️
I’ve never had my doctor recommend a scope. I’ve had my Ostomy for 5 years. Is it something I should enquire about?
I think it is reasonable to ask, but the reason I have gotten frequent scopes is because of my disease, not my ostomy!
They had three doctors looking at it and could not diagnose what I had
I had shingles when I was 9 years old and they didn't know what it was
Can you share your doctor