I had bowel surgery - ILEOCOLECTOMY: CROHN’S DISEASE - Sally Boebally
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- čas přidán 13. 05. 2020
- Around 10 years after my diagnosis of Crohn’s disease I had my first bowel surgery! If you’re thinking of having this surgery hopefully this video helps you :)
My first Crohn’s disease video:
• What is Crohn's Diseas...
Special thank you to Musgrove Park Hospital and their staff for allowing me to film myself over these past 12 months.
USEFUL LINKS:
Crohn's and Colitis UK: www.crohnsandcolitis.org.uk/a...
Another great Crohn's video from Kevin Heimbach: • I HAVE CROHN'S DISEASE...
REACH OUT:
Twitter: @Sallyboeballyy
Instagram: @Sallyboebally - Zábava
Awww Sally, I felt heartbroken when you got upset! You’re brave for showing your story. It’s great to hear about your surgery and experience as someone who doesn’t have Crohn’s and has helped me understand it a bit better. Xxx
Emma Wood thank you for your lovely comment ❤️ I’m glad it helped you understand the illness, hopefully it can help people thinking of having the surgery too 🤞🏼 ☺️ xx
Glad to hear your doing well even after having a hard recovery from your surgery. And congrats to yourself and Robbie on getting married, I hope you have a lovely day ❤😊
Jess thank you! I’ve been so lucky I’ve had a few good months this year so far 😄 thank you!! We are really feeling for the other 2020 brides and grooms at the moment, we’re so lucky we got married when we did! 😱 xx
@@SallyBoebally I'm up for this surgery soon I'm most afraid of the anesthesia how did that fell did you just go to sleep or what ?
This was incredibly helpful, thank you!!!
I just had my surgery a couple of days ago and this video was really informative so thank you for the honesty.
LadyT Mitchell hello, so pleased this video has been helpful to you 😊 best of luck with your recovery - you’ll smash it!
Thanks for sharing. What a story...
We are truly lucky to be in Australia with our amazing Medicare system.
I have UC myself and at the moment have achieved remission through first line medications. All the best to you going forward!
Hey! Though I’m an Aussie I actually live in the UK! The medical care in both Australia and the UK is fabulous.
Glad you’ve been able to control things with medication. Hopefully if you ever need surgery this has helped you feel more at ease about it :)
Thank you for this video. You are a warrior💪🏻
No worries! I hope the video was helpful :)
Thank you for sharing….my first appointment with my surgeon is rapidly approaching to go over the procedure and your video has been illuminating and has calmed my nerves considerably. My circumstance is bit different as I do not have Crohn’s disease but a inoperable polyp on my Ileocecal valve, thus requiring the resection. Thanks again!
Thankyou for sharing this! I had my appointment yesterday to go ahead and book the same op. I’m really scared and your experience put me at ease and I know we are different but I also feel this op will be best option for me aswell. Glad your doing better ❤️✨
Hey! You will know deep down if it’s the right choice for you. This surgery is a real common one and I’m sure your surgeon is super experienced! I found the recovery really manageable - the antibiotics were the worst part! All the best and message me if you need anything :) X
@@SallyBoebally that’s exactly right thanks heaps! I really appreciate it☺️
I was diagnosed with Crohn's in my terminal ileum in 2016 and did well on medications until the beginning of 2021. I'm not having as much luck with medications and there is very early signs of inflammation starting in my colon. With the option of surgery kind of looming, this video helps me a lot because I don't know what to expect with having a resection. We sort of grieve our previous ways of life as we hit these milestones, but it's about continuing on in the best way possible. I sincerely wish you the best of luck with everything. Hopefully we get a cure at some point!
Hello, I’m so glad you have found this video helpful. I can honestly say surgery was the best choice I ever made. I’ve been in clinical remission for 2 years now and am pregnant with my first baby! I totally know what you mean, it’s so unfair sometimes, but it makes us stronger ❤️
I am coming into day 2 post surgery (same surgery) and I have watched your video prior and now post, it’s so helpful both therapeutic and informative. Thank you for putting it all out there.
Hey! That’s so good to hear it’s been helpful to you ☺️ that was my hope when I made the video. Always here if you want to chat :) also: my maiden name is Light 🤔
@@SallyBoebally It's much appreciated, and I may take you up on the chat. I am doing pretty well, just still VERY slow moving. My maiden name is also Light! How cool, I don't ever really see our last name around often!
Hlo app thek o after surgary
Thanks for telling your story! I was diagnosed with Chrons last year & today my doctor basically told me that I will be needing surgery to remove 12 cm. I’m happy to finally have surgery tbh & this video has helped me come to terms with it all. Thanks for going over it all!
I’m glad my video has helped :) good luck with your surgery!
Thank you for sharing your story :)
Thank you so much for this video! I’ve been admitted to hospital twice already this year. First time (January - 1,5 weeks) I got diagnosed with Crohn’s disease and second time (February - 1 week) my inflammation and abscesses had gotten worse.
I’ve been back home now for a couple of weeks with 2 types of oral antibiotics. I’m afraid that they’re not doing their job though, because my pain is getting worse again. Having another MRI on Tuesday and then on Thursday I get the results from my doctor. I am a little nervous, because my doctor has already told me that in my case surgery might be necessary. I know that I live in another country and that things could be different here, but your video still gave me an idea of what to expect if I do have to have surgery. So thank you so much for that! Lots of love from the Netherlands! ❤️
Hello! I’m so glad my video helped - you are the exact type of person I made it for ☺️ I’d have the surgery again in a heartbeat if I needed it. Best of luck to you and I hope you get some relief from your symptoms soon ❤️
wow i had the exact surgery 3 months ago i m really hoping my disease don't come back again coz my parents are really terrified because of all the experience i had in the past 6 years and they dont want me to suffer again . I m so happy to see your life is much much better and you are doing great ! :D
how have u been feeling ever since the surgery??
This may be a long shot! I am debating having surgery. Could you message me, I have a few questions and can't seem to find much about this surgery.
Thank you. Our son has Crohn's. He has been on a liquid diet for 2 months now, but still has a stricture. So he will be having surgery soon. He is 13. It has helped me to hear your story. God bless you.
Hi Jodi, I’m glad to hear my video has helped. All the best for your son, he will recover well I’m sure :)
Can you look up Dr Zsofia Clemens on the carnivore diet for Crohns and Ulcerative Colitis. He has real hope with changing his diet.
Wow we have the same situation! My surgery is scheduled 3 weeks from now. I'm kinda of an emotional mess, contemplating whether or not this is the right decision. Thank you so much for sharing your story!
Having this surgery was the best decision I have made... It’s made such a difference to my quality of life! All the best to you and wishing you a speedy recovery (if you go ahead ☺️)
Thank you for this. My wife is about to have this exact procedure and I'm wanting to learn as much as I can now so that I'm prepared to do everything I can!
How lovely that you are wanting to support her :) each case is so individual, but let me know if you have any questions
@@SallyBoebally Thank you!! I do have a question specifically about diet. What kinds of things could you eat during the first 2 months after the surgery?
@@TonyAtkinspdx hi Tony, sorry for the late reply! I was able to eat normally after surgery - no restrictions from the doctors aside from a little and often strategy. I followed a low residue diet before and after the surgery but that was just what worked best for me and wasn’t suggested by my surgeon. I slowly introduced veggies again probably 3 or 4 months post op. Hope that helps - obviously please take your doctors advice as I’m not a medical professional :)
Thank you for sharing 😊 I have Crohn’s Disease too. I got my diagnoses 15 years ago.
CROHNSWITHME SOPHIE hey, I follow you on Instagram! Thanks for watching xx
You are a very brave girl.
Hope you are having more good days. Thank you for sharing your journey. 5 years ago today I left hospital following my surgery. I had 2 strictures a perforated small bowel, sepsis , and an inadvertent stoma when the drain put into an abscess at the point where my bowel was perforated connected with my bowel ( fun times) .
Although the whole saga was , just that , a saga 😉 with the help of my lovely wife, I made a full recovery. Appart from my scars ( I had to give up wearing bikinis ) .
If anyone reading this is headed for surgery just a few things that will make the process a little easier.
1. Take someone you trust to your appointments. Some times there is a lot to take in and your head may not be in the best place to deal with it all.
2. After surgery recover at your own speed. There is not set agenda to recovery.
3. It's OK to have bad days, there will be more good days to come.
4. None of this is your fault. Don't be to hard on yourself when things don't go to plan.
And finally, join a local support group. TBH not many people want to discuss what goes on in the bathroom so finding people with similar experiance to talk to can really help.
Fighting Chrones takes guts. 💜
Thanks for posting this responds!
Thanks! Our 15 yr old son has bowel surgery on Tuesday for his scarred areas. He was diagnosed with Crohn's 15 mos ago. This helps ys see what to expect. Thanks for sharing!
So happy I could help. Good luck to your son, this surgery has made such a positive impact in my life :)
Hey, honestly touched my heart so much watching this, just know your not alone! my sister has the same illness and claims a mobility car (qualified pip) so a benefit like that could help you with getting around or make life a little bit easier for you, stay strong xx
I have had bowel surgery and I know how you feel, sometimes you think you can carry on life as normal and then the pain kicks in not fun! Its great you have recovered so well! I find keeping hydrated and vitamin C levels high have helped with my bowel pain...
Hi Sally I want to thank you for your video. I was diagnosed with Crohn's in 2019 and have been on biologics since. However, my colonoscopy yesterday showed narrowing, scarring, and inflammation in my terminal ileum. They had already put a balloon in the ileocecal valve with my last colonoscopy in 21. My GI wants to do surgery in the same area as you. I'm nervous about it. Plus being away from work for so long. Still, I am also strangely calm 😊. Thank you for your detailed surgery journey. I'm so glad yours was successful and wonderful in the end. I hope to make a sound decision with my own journey. God bless you!
Thank you for the lovely comment :) I hope everything goes well for you :) I am 5 years post op and am soon to become a mum for the second time, the surgery was the best decision for me and I am so grateful I went ahead with it. All the best to you :)
@@SallyBoebally That is fantastic news! Congratulations on being a mom twice now! I hope and pray that my hubby and I can have kids one day.
I went through some of this. Each story is different with so many variations, and it's certainly hard to manage people's (and sometimes your own) expectations of getting better fast and fully. Thanks for the amazing testimonial, I wish there were many more on YT. How are you feeling now?
I hope this helped! Im 2 years post op now and doing really really well. No regrets whatsoever.
@@SallyBoebally I'm absolutely fearing my upcoming colon surgery. I'm deathly afraid of operational and post op complications and my greatest fear aside from that is ending up with a colostomy even though the procedure I am having is a right hemicolectomy.
I am 17 and I am having this surgery soon. Thank you so much for this video. I found myself relating to you entirely. I also felt like surgery would be worst case scenario, and then a few months later I had a flare up and my Dr. decided on surgery. It was so sudden and scary. It’s also my ileum that is narrowing, which i’ve found out is quite common for Crohn’s. Thank you again.
My husband had surgery at 17 an didn't have any flare ups for 15yrs, I really hope you have a good recovery and long period of calm
Do you feel better now after the surgery? I have a 20cm stricture and might need this surgery
@@maxscheel3951 Hi! I have been in recovery since April 11. I am feeling amazing!! I have been able to eat anything I want and my pain has gone away. I am also able to get my infusions every 8 weeks now instead of 4. I used to flare up right before my infusions but I haven’t had a flare since surgery. I will say though, I have more frequent bowel movements. Also, the first month of recovery was rough and very painful. Please do not let that scare you though! It was so worth it. I wish you the best and a fast recovery if you do get this surgery
@@paigo5874 That's so good to hear! I really just want to get it over with but my surgery isn't until August :(
I have crohns disease for 20 years. My gastro referred me to a surgeon because i have stricture in my ilium , jejunum and anal part.I'm scared coz he told me about the high risk after surgery.pls i need you advice
You're very brave for sharing this, thank you! I've had Crohn's Disease for almost 2 years and tried 4 meds and only had short term remission with Humira. I have to get an ileum resection and pelvic abscess drainage within the next few weeks and I'm so nervous and scared, your story made me feel a little at ease and less nervous. Thank you!
HelloItsSaada wow it sounds like you have had a lot to deal with in 2 short years! I’ve had Crohn’s for 10 years so I’ve had a while to come to terms with having surgery! Im glad my video helped. Hopefully you’re able to get some relief after this op xx
I had the exact same surgery
How did it go?
YOUR VIDEO MADE ME CRY. I HAVE TO HAVE HAVE SMALL BOWL SURGERY 10/26/2020. I HAVE A BEGNIG TUMOR IN MY SMALL INTESTINE. IT IS CALLED A SEGMENTIAL RESECTION OF THE SMALL BOWEL. I AM GLAD YOU ARE FEELING BETTER NOW. THEY THOUGHT I HAD CROHNS DISEASE ORIGINALLY. BUT IT IS NOT. THEY FIND THIS OUT. THANK YOU FOR THE VIDEO IT HELPED ME SO MUCH! I'M VERY ANXIOUS AS WELL! GOD BLESS YOU❤❤
@ Eva Woodworth: I'm having a right hemicolectomy because of two large polyps that were found in my colon back in January during a colonoscopy and endoscopy that also led to the diagnosis of a peptic ulcer caused by an J pylori infection. The ulcer has since healed and my H pylori seems to have cleared up following antibiotic treatment. My surgery is scheduled for september 8th,which is this coming wednesday and I am scared as heck about it right now.
I almost feel like a death row sitting there counting down the hours and then the minutes before the scheduled execution right now.
I’m totally shocked how many people suffer like I do with this I to have severe Crohn’s. I have a 2 ft segment that is now blocked pretty much I meet with a surgeon tomorrow and plans for surgery within two weeks. It’s going to be rushed because I can’t pass much and is unbearable pain when my body is trying to . Thank you for the video explained enough I’m having the same surgery.
Good luck I hope it all goes ok for you!
Well day 4 in the hospital had my small bowel ilium surgery done and my experience was hell !!!!! You seemed to be in far less pain I was in agony for 2 plus days before it calmed down a bit . They had to take 64 CM of mine though and the surgery took almost 5 hrs being out . I have similar cuts to yours except one was low on the belt line and higher one like yours and belly button . The hospitals here in the US don’t like to med people up which is fn crazy I’m kinda not happy with the pain end of this, it was that bad that I pray to god I never need to do this again because I don’t no if I could do this again and I have a high pain tolerance ! I have to do injections in my stomach blood thinners for 30 days I still don’t have a appetite and they won’t let me go home until I eat two full meals so I’m hoping next day I’ll feel better and be able to eat . Just wanted to share my experience because I was at ease watching yours , your recovery seemed very doable without tons of pain and my experience was totally opposite with a very well known hospital and a great surgeon I just think the pain med problem here in the us screws people who actually needs the meds there so scared to hand them out easily which is so wrong !!!! God bless wish anyone else going through this the best and I hope this solves my problem and I can actually eat a full meal without blocking up in agony .
Great video to normalise Chrons! I had a suprise diagnosis of fistulating Chrons in late 2020. Within a few months of diagnosis I spent Christmas in hospital having 70cm of bowel removed.
Found this video as I’m yet to have a ‘normal’ bowel movement mainly down to the removal of the valve and it’s very frustrating to live with!
Koi problem 70 cm ileum resection
I had same surgery 6/2018!!! Was diagnosed 3/1/2018 after suffering with symptoms for quite sometime prior!!!Long recovery, but definitely was needed!!! I’m on Remicade every eight weeks (next is on 3/20/21) as well as other daily oral medications!!! So far things are stable and inflammation (crp) has been good!!!
Glad to hear you’re doing okay ☺️ thanks for watching!
How long did the recovery take?
I adore you lol I'm on day 4 of being told I have gastritis and the one where you throat is damaged as well
I'm waiting for the blood test results and tissue results I know it's more ... I've lost 6 pounds in 4 days with so many symptoms thank you for sharing your story :)
Jenica Adkins hello. Thank you for your comment. I’ve had gastritis before, I feel your pain it’s bloody awful isn’t it! I hope you get some relief soon. Always here for a chat if you need it x
Thanks so much 💗
I am having ileocaecal resection in 2 days. My doctor said I will continue Stelara to help keep this disease from coming back too soon. Thank you for your video.
Best of luck with your surgery :) I hope everything goes well for you!
My bf just had the surgery you did but instead of just removing the scar tissue stricture as planned, they removed 23 inches!!! They hadn't seen all the diseased tissue on any of the scans so they had to open up (more than the planned laproscopic). Things went smoothly enough - no stoma, no leakage, but now 2 weeks post-op he is on an injection blood thinner that is giving him HORRIBLE diarrhea. I'm trying to figure out how to reduce the pain in his bum and reduce the diarrhea.... there are so few videos out! Thank you do much for sharing your story!!!!
Hey Vanessa, sorry to hear your bf has been struggling a little. I actually found that it wasn’t the blood thinners that gave me post op upset stomach, it was the fact I was missing my ileum! It took quite a few months for my body to adjust but now I have little to no issues. Your body just needs time to heal. There are medications his doctor can prescribe to assist with those symptoms, but over time I think it should settle hopefully :) all the best to you both!
@@SallyBoebally So this means that even without the ileum one can still have formed stools? I am very keep to hear your asnwer as I will be undergoing the same surgery very soon, and I am trying to predict how much will this surgery change my life. Thanks!
Thank you so much for this video! It has helped me immensely and managed to make me feel like I am not alone after all. I have just had the same procedure 5 but my incision was one big one instead of 3 smaller ones. My stomach is still very swollen but I don’t feel any pain… did. swelling take longer to go down with your surgery too? I can’t seem to find any information about this anywhere…
thank you in advance!
Hello, so glad you have found my video useful! I would say my stomach was swollen for a few weeks atleast, and it was tender for about 5-6 weeks I’d say. I think based on you having a larger incision, that could by why it’s been swollen for a while? If you think it could be an infection, def get in touch with your doctor! Hope that helps :)
@@SallyBoebally thank u so much!! I hope you are doing well btw. Stay blessed 🤍
Hello Sally, I hope all is well right now considering I'm commenting a few months after you posted. I really hope you're feeling 100% and back to your old self. I'D like some insight from your experience on my situation if you don't mind. So I've had crohns disease for about 7 years now and recently I went through a flare-up ( which has only happened once prior to this time) and I went to the hospital to get treated, and found that my lower right small intestine was inflamed. Doctors put me on antibiotics through the I.V for 3 days and then oral antibiotics after I got discharged. For a couple of weeks my symptoms have completely gone away, and then just today they're starting back up. My G.I doctor told me if the inflammation comes back he recommends me doing surgery to get rid of the diseased part of my guy, kind of similar to your situation. Anyways I just wanted to let you know that I'm thankful for you sharing your experience with this surgery and being honest, and giving me confidence to do surgery. Thank you for taking the time out of your day to read my comment, I really appreciate you and wish you good fortune. Lastly, I hope your crohns disease is well manage-able and you can enjoy life to the fullest , as I hope one day I can too. 🙏❤
Hello Ali, so glad to hear my video was useful. I’m really well at the moment thank you for asking. All the best for your surgery!
Thanks for your video. I am not a spring chicken either. I have Crohn's. Was diagnosed 10 years ago at age 47. I had 3.5 feet of my small intestine and 6 inches of the colon. My surgery was open, instead of arthroscopic. I really appreciate your explanation of the procedure. Good bless you.
I had the same of
Hi I had the same 9p as you it was horrendous how are you now
App thek o opraision to bad
@@deeroberts8872 thek o app
I’ve had crohns for 7 years and had to go for surgery last week., it was hard as a 17 year old to process it … I’m feeling alot better now… I’ve been through remicade , humira , Stelara , many others meds but surgery was the last option .
None of those medications worked for you? Did yo continue to have CD flare ups?
So happy you’re feeling better, Crohn’s really sucks. I just shared my story with my subs, I too found there wasn’t much recent information available on YT when I was researching. I have had 3 Crohn’s surgeries, February 2019 I had my entire colon removed.
Thanks for watching my video! There really isn’t much info is there, well done for sharing your story! We are both warriors 💪🏼
I was diagnosed crohn it's Vry painfull plz help me n share ur medicines
This is worse case scenario for me for having my appendix out. What has your diet and bowel movements been like since having surgery? Any nutrient deficiencies?
Thanks for sharing I am sure I will be in surgery one day but today is the first colonoscopy for me hopefully they will say it's not that bad...but we all know that's probably not going to happen
Stay positive! Nothing is negative, once your doctors know what the problem is they will be able to treat it and make you feel better. Good luck!
As someone who had their ileocecal valve and some intestines removed at birth due to a malrotation of my intestines that ruptured, as well as having numerous surgeries since then for stricturing of my intestines from scar tissue… my best advice for everyone is to fast often because fasting is great for reducing inflammation, stick to foods that are easy on your body, and drink lots of water! Tea is good too 😉
I had my surgery 2 years ago. I was scared but im glad i did it. Never felt better.
Hlo
How are you feeling now?
@@Tylerf962 honestly i feel great. I have my occasional day where i dont feel the best but other than that im still in remission and taking my meds everyday
Thanks for sharing. I recently also had a bowel resection for Crohn’s disease at 19 years old but in recovery I took a rough detour and was diagnosed with another rare condition called superior mesanteric artery syndrome caused by muscle wasting and severe malnutrition which I can thank Crohns for
I had a stomach ulcer caused by an H pylori infection last august and got diagnosed via endoscopy in january of this year and during that procedure is when they found polyps in my colon during a colonoscopy. The polyps are too big to remove with the scope so I have to have surgery to remove the effected area of the colon and connect the remainder of my colon to the small intestine this coming wednesday.
What were the signs of this and how do they know u have this
I had to have my large bowel removed last year so I have an ilyostomy and I hate it. It did , however, save my life as it’d was an emergency .
Do you have undigested food in stools during the disease period
Do you find any nausea with certain foods or any constipation after this? I got a diseased part of my bowel out also I’m 3 weeks post op and find myself constipation and sensitive to some foods.
Hello, no I was the other way and has diarrhea - everyone is so different though! If you’re concerned def speak to your doctor. I was sensitive to food before and after my operation, and it took several months to reintroduce certain foods. I hope this helps :)
Ty for ur video my daughter is about to have surgery as we speak we are into the emergency room,she has a perforation I guess this is like the same thing u had
Hi Amanda, sorry to hear your daughter isn’t well. I didn’t have my surgery because of a perforation but I’m sure there are a few different reasons people have it done. Wishing her a speedy recovery xx
Hey, thanks for the video. Just fine from an appointment where they have suggested surgery (same section as you). Did they say you might need a temporary stoma at any point?
Hello! Not in my case no but obviously it depends on the reason for your surgery. I know there is a small chance you might need a stoma if there are complications with this kind of bowel surgery.
@@SallyBoebally thanks the reply. I haven't had any details yet. Still hoping I won't need surgery but certainly want to avoid a stoma.
Great vid. Have Crohn’s disease for 21 years. Last 3 years been on stelara and for 2 years been on double dose (4 weekly). Was wanting to go back to 8 weekly. Gi did ultrasound and I still have about 5cm of mild disease that’s not responded to stelara as it’s the old part of intestine that’s had it for 21 years. Was told lap bowel resection so will see what happens.
Great video though and hope your still ok.
I just keep getting a feeling that even though mines mild that somethings not right and now I’m starting to wonder if my esophaguel Crohn’s will flare soon as I get lots of cramps in upper tummy and gord and just feeling like something stuck in back of throat again which is weird. Am on day 11 of low FODMAP low fat and low sugar diets and may even do some ensure plus as I feel somethings not right at all. They want to do scopes in 2 weeks time so see how I go.
Best of luck with it all
Diana Peter sorry to hear you have had some trouble. Hopefully my video made you feel more at ease about surgery if you do have it :)
Sally Boebally sure did. I love to be prepared. Thank you
Thank you for making this video. If I may ask - how long did you need off work to recover?
Hello! I had 2 full months off work, and then on month 3 I did a phased return to work (starting off 2 days and easing my way up to a full week). It’s really important to take it easy and take enough time off to recover 🙏🏼
@@SallyBoebally -- thank you so much for replying! I was told 2 weeks off work for the same surgery as you - doesn't seem like a long time to recover? I hope you are doing well now!!
I have just had the same surgery I’m on day 4, how long did it take for you to start feeling normal again and the bloating and feeling sick to go away, I still struggle to eat how long did that last for you x
Hello, so sorry for the late reply. Everyone is different, I started eating a day or so after surgery but the antibiotics I took did make me feel a little bit sick.
Thanks for sharing your story. How are you now? I had my ileum & ascending colon (the bit of colon the ileum joins on to) removed. It was due to something called an intussusception. Did they preserve your ileocacal valve do you know? They took mine away because the whole area was necrotic by the time they eventually took me back to theatre & diagnosed the issue. The lack of ileocaecal valve is causing the bacteria to backtrack into the remaining small bowel, which they can't fix because there is no valve to separate the small & large bowel. This is causing various deficiencies & nutrient inbalances, a lot of bloating & discomfort, hairloss, skin problems, kidney & liver problems, & I'm really underweight. My surgery was almost 20 years ago, but my health has only really started to suffer majorly in the last 6 years or so. I haven't been anle to find anything on youtube about not having an ileocaecal valve, but your video popped up in the search.
Hello, thanks for your comment. I’m not too sure about the valve I’m sorry, though I imagine since your surgery was some time ago that maybe they might do thing different these days? It may be different depending on what the surgery is for also. I’m really well thank you, thanks to my surgery and to a biologic medication I take. Have you spoken to a gastro specialist to see if there is something they can do to help with your issue? All the best.
I will be getting this exact same surgery but to remove the pre-cancerous tumor instead. If you don’t mind me asking, do you still have some diarrhea these years later? Also, did you have issues with your B12 levels after or with absorption of other vitamins? Hope you are still feeling well🙏🏼
Hello, thanks for the comment. I am doing really well, thank you. It’s hard to answer your questions as I still have crohns disease as the surgery isn’t curative. In saying that, I’d say any surgery related bowel upset was resolved within 12 months (I know that sounds a bit scary, but it did resolve so that’s positive! The body does adjust). I have 3 monthly b12 injections but again that was prior to my surgery and a crohns related thing. I believe a lot of people do supplement b12 after this surgery though. All the best to you :)
@@SallyBoebally thank you so much for your response! I’m so glad to hear you’re doing well. Also, thank you for the info. It really helps me have a possible idea of what to expect.
My name is Sally and I was diagnosed with Crohn’s 1 year ago. I’m sure I’ve had it a lot longer than that as it took a while to diagnose it. I started meds. last year (Stelara), but something isn’t right. So….another colonoscopy this Friday to see if anything is amiss. Argh! Currently dealing with a flare up. , which sucks.
You’re videos are wonderful and helpful. They give me a lot of hope. You are a true warrior! Thanks.❤
I had an ileocolectomy when I was 14, not from Chron’s but from internal trauma from a car accident. Just searching for info... thanks!
Interesting! Hope you’re doing okay :)
Getting this exact surgery tomorrow, colorectal surgeon said if worse comes to worse he’s gonna give me a bag. I hope to god it’s something he can fix with few complications.
Hello. I believe there is always a chance they might need to give you an ileostomy if there were any complications, but hopefully they’re able to avoid it if possible. If you do get one there is a lot of great support online, and also they are often reversible. I presume your doctor will go down that road only if necessary. Good luck for tomorrow!
@@SallyBoebally thank you 🙏🏽🥹
Hello Sally I had this surgery in 2020 sept as a result of a bad perforated appendix. The surgeon said I don’t have crohns but who knows. I had pains for up to a year before all hell broke loose. Now almost 1.5 years later, I still have bad bowel days where I get random diarrhea and urgency which is not fun and I think it’s because of removal of ileum and the ileocecal valve. I wanted to ask you how long did you have diarrhea/loose stools etc and when did they resolve? Did you take any meds or probiotics to help with it? If so please let me know which ones? And diet wise do you follow a certain diet. I am 33F and I am looking forward to having a baby. I also had 2 miscarriage since then but hopeful. I read your comment somewhere that you are pregnant and that gives me so much hope that someone who has had similar surgery is successfully pregnant! Wishing you so much love and luck on this journey ❤️ how old are you if I may ask. And thank you again so much for posting your story!
Hello, I’m glad to hear my video was useful to you. I’m happy to answer your questions but everyone is different and recovery is a real individual thing. My bowel completely settled about 12 months post op. I didn’t feel the need to take any meds but I know there are some available should you need them. The diet I followed was crohns related - I would recommend speaking to a dietician and seeing what they suggest for you. I can currently 20 weeks pregnant so I wish all the best to you on your journey :)
Ps: I will be 33 in April
Thank you Sally really appreciate it. I am going through some kind of flair for sure where I am having some former stools but also many loose. Wondering if some how there is bile acid malabsorption or something since the terminal ileum and ileocecal valve were removed. It’s just unpleasant and uncomfortable at the moment and I am 1.5 years past the surgery. Did you ever take cholestramyne for binding your stools. I may not be spelling that right. Thank you and keep being well! ❤️
I’m using like the azopreme thing?? I’m 13 and Crohn’s has definitely changed my childhood, it took me a year until I could figure out that I had Crohn’s. I haven’t had surgery yet, “knock on wood”
It's called Azathioprine, it's a very basic immune supressant used to keep Chrons under control. Honestly there are much better treatments available, but if this works for you, then great.
did you ever try amap therapy for crohns or stemcell transplant? That made my crohns go into remission
Hello. There are lots of treatments for crohns that I have tried, I haven’t heard of stem cell transplant being used in the UK. Everyone is different and there are new treatments being developed all the time :)
I am having a very hard time with the exact same surgery. I cant eat anything without pain. I have severe crohns left untreated since the age of 10. I'm 27 now. This is the worst thing I have ever had. I had an invasive expository surgery. About an 11in incision. Thankfully I was knocked out lol. But it is awefu
Hi Jacob, sorry to hear you have been struggling. Have you been in touch with your medical team to see if there is a reason for your pain post surgery?
Drink organic kefir and organic yogurt , it will benefit your Crohn's . Also , to eat and drink various prebiotics and probiotics on a regular basis .
Thank you for your message, patients should always check with their doctor before starting anything new. Especially if they’re considering pre or probiotics and are immunosuppressed.
I'm having a right hemicolectomy on wednesday (9-8-21) to remove a couple of polyps in my colon and I'm scared as heck about it.
Hello, I’m sure you’re in safe hands. Hopefully my video has helped you to know what to expect when you have the op. You will do great. Good luck!
I had this done on September 28th. I am in pain still
Sending well wishes your way :)
I’m on day 7 but I had a open surgery not laproscopic, the nausea is horrid especially with the amoxicillin antibiotics thank god I have anti nausea meds , eating is so hard & I still have so much trapped gas , I have a large incision and they cut a piece of my bowel I hope it gets better
Sorry to hear you’re struggling. I didn’t have open surgery so I’m not sure what the recovery is like. I hope you feel better soon x
My husband is having this now ppst open surgery. So so sick, its helpful to hear its normal
Hello lovely, sorry to bother just wondering if you could eat anything after surgery or not?
I’m considering it highly
Hello, I think it depends on your doctor. I ate right after my operation and was encouraged to eat little and often… but a friend of mine in the US wasn’t allowed to eat for a few days after her operation. Hope that helps x
I do think though you shouldn’t base your decision on whether or not you can eat after 😄 I was very on the fence about having the surgery but 3 years on I think it’s the best decision I’ve ever made
That makes, sense it’s just that I recently got diagnosed with this illness, I’m 19, the thought of being chronically like this really scares me, I haven’t completely taken aboard the diagnosis all I can do is, google things, and it scares me even more, Before this illness my life was eating food, I am on medication for it now, I’m really scared.
What is remission like for you? Or what was it like for you? Thanks a lot for replying,
@@zoeanastasia5027 I was 19 when I was diagnosed also! The early days are a little rough trying to come to terms with your new life, but I’m over 10 years in now and I don’t remember my life before anymore. Just take one day at a time. I didn’t need surgery until I was 30. Trust your doctors but do your own research. There is a great community on instagram but I will say that when it comes to your own treatment, look at facts from research and not to other people for advice on what medications or surgeries to have. It’s good to have support from other IBD patients but just from an emotional POV I’ve found :) I’m always happy to chat on IG if you need anything else x
Sorry to bother you, I found this video helpful I couldn’t connect to your Instagram, to send you a message about your journey, my final question is how is dieting for you now, do you feel like you have to be on a strict diet still?
I see that the only options are having a bag if the illness itself gets worse sounds terrifying, I’m glad your feeling better now, fellow Aussie ☺️
Please check out Zsofia Clemens on the paleo keto diet. There’s real hope if you’ll do the Jordan and Mikaela Peterson diet. Those alerts for the Intravenous additives and flask changes all through the night are a big pain.
Thank you for your comment. I don’t believe there is a one size fits all to treat IBD. I have tried ‘diets’ before but that doesn’t work for me personally, what’s best is a good lifestyle and medication hand in hand. I’m not sure what you’re talking about flask changes? I inject my medication once every 4 weeks and it doesn’t impact my life, so I feel very lucky.
Thanks for the info,my husband will under go crohns on tuesday.Hopefully everything will go well
Good luck to your husband!
That intro 😭😂....
Im getting this done tommrow after 2 years of agony Im just hoping that I dont develop a stricture somewhere else
Good luck for tomorrow. Think positive thoughts and just focus on recovery for now :)
The worst part is the bowel prep i dont like taking the miralax it tastes so bitter
I have flare ups like every 2 weeks, I probably need to change meds
Lactose Bruh hello, maybe go back and see your doctor if you’re struggling. Hopefully they can help ☺️
Can I ask how long you were in surgery for ?
Nikkita Stepanowicz hello! I can’t be 100% sure but I think it was no longer than a couple of hours :)
I have a similar surgery coming up but it’s a little more complex from what Iv been told and was curious to how long I’d be out for. Thanks for this vid it’s really helpful and I hope your well.
I lost all my hair and have really bad acne since since having this disease
Oh no so sorry to hear that :( if it helps I lost a lot of my hair in 2018 and have recently finally had it grow back :) there is hope! xxxx
Please can you explain your symptoms?
i’m soon having a bowel re-section for crohns and i’m sooo nervous
Don’t be scared! It’s the best thing I’ve ever done :) xxx
How’d it go?
How did it go? How was the recovery?
@@Melissa-ece it was delayed because of covid so i’m still waiting :( i’ve been on a liquid diet since december 2020 for prep.
@@katieh9795 are you in the UK Or England?
Did they really let you eat sausage rolls 2 days later?
Yeah! I was able to eat whatever I felt like.
@@SallyBoebally 😮 that’s ok if all goes smoothly.
what is the background sound in 21:00
All you can hear is my voice at 21:00 😊
I mean the music. Srry
Did you have Diarhea after surgery?
Hello, yes I did but this is different for every person :)
@@SallyBoebally for how long?
How are you doing now?
Hello, I’m actually great! I’ve been really well for about 2 years :)
@@SallyBoebally do you take any medecine?