Having a incurable illness like Crohn’s disease is a heavy burden and a heavy cross to endure. Now thank goodness I don’t have it but I have a friend of mine who has it and sometimes when it escalates out of control, he gets emotionally upset. One time when he came my apartment, he received bad medical news about Crohn’s disease getting worse and he started crying and I couldn’t stand him crying. So I gave him a hug and assured him that everything is going to be fine. And I said to him, “Gabriel, don’t let your incurable illness get the best of you. Keep on being hopeful and optimistic in the future remember what it says in the book of Psalms, ‘If today you hear his voice, harden not your heart.’” I even have him on my Our Lady of Lourdes novena prayer list. I even told his mom the same thing.
My CROHNS Story I was diagnosed 2 years ago at the age of 19 I am now 22 I’ve had my Gaul Bladder removed had one IV Infusion treatment, 2 colonoscopies, 2 endoscopies, 2 MRIs, 11-13 treatment Stelara shots annual blood works check ups so many I’ve lost count I do it every 2-4 months and I’ve also now been diagnosed with Osteoporosis, Fibromyalgia, and Inflammatory Arthritis so many bathroom emergencies and 5-6 accidents and I have an on the go Emergency Crohns bag wipes extra clothes, perfume, medicine, mask, hand sanitizer, hand sanitizer alcohol spray, bathroom access card to show people at the establishments you have a health issue that allows you to always have access to a bathroom and my credit cards and my ID and my insurance card and I have a medical bracelet it’s hard but push to get tests done advocate for yourself get diagnosed take your meds and do your treatments and get support and knowing you are not alone is key just because you look okay doesn’t mean you are okay ask your doctor about anemia because due to the lack of vitamins and nutrients and nutrition you can become vitamin deficient and lose iron and it can cause you to become anemic. You will hear maybe it’s IBS NO NOPE NO IBS is NOT Crohns you have Crohns. Cut OUT Lactose completely from your diet no ice cream no milkshakes be careful no milk replace is with almond milk that has NO Lactose and avoid processed and fried foods as much as possible eat grapes, apples with no skins take off the color skin parts eat the apple underneath and eat grapes, drink juice don’t drink soda and blueberries, pineapples, rasberries are all good eat less raspberries than the rest and strawberries are okay avoid everything else and eat sorbets and sherbets and frozen fruit bars and lots of vegetables and salmon and drink lots of water it helps. My Medications Stelara (Injection every 8 weeks) Azathioprine (3 times a day) (50 Milligrams) ( 1 capsule 3 times a day) Hyoscyamine (As needed) (0.125 Milligrams) (1 tablet every 4 hours as needed for abdominal spasms) Diphenoxylate (4 times a day As needed) (for diarrhea) Dicyclome (1 tablet 3 times a day as needed for abdominal cramping) (20 Milligrams) Omeprazole(1 time a Day in the morning) (40 Milligrams) Tumeric (1 time a day) Acetaminophen Tylenol #4 (Codine)(As needed every 4 hours if pain is severe severe) Anxiety (Symbalta) (1 time a day) Regular Tylenol Arthritis Strength (4 times a day) Pregabalin Lyrica (1 Capsule) (3 times a day) Nature made D3 (5,000 IU) (125 mcg)(2 Capsules every morning once a day) Duloxetine Delayed-Release Capsules, USP (60 Milligrams) (1 capsule 2 Times a day) (Anxiety/depression) Sulfalazine (500 Milligrams) (1 tablet 3 times a day) Vitamin D2 (1.25 Milligrams) ( 50,000 UNIT) (1 capsule once a week every Saturday) Methocarbamol (500 Milligrams) (1-2 tablets by mouth at dinner right before bedtime) (optional) (muscle relaxer) Do NOT take anything but Tylenol Arthritis Strength AVOID NSAIDS TYLENOL ARTHRITIS STRENGTH is BEST for people that have Crohns take Vitamin, Vitamin D, Vitamin B12, Calcium, and Zinc. Look up balance of nature for nutrients and vitamins it will help. You will have to do steroids such as prednisone it sucks but you will make it through it there is a light at the end of the tunnel the moon face the sweating the anger the mood swings and side effects will not last forever you will get off the steroids and the colonoscopy drinks are hell but once you keep them down and get through the night before the colonoscopy after your colonoscopies life gets better those were the worst parts so far for me the never ending part for me that I’m still going through emotionally is having to do blood work and waiting to here if the levels and blood panel results are still okay it’s nerve wrecking getting a support system is key and it will help throughout the journey. Remember it will be okay and it is okay to not be okay but don’t let your disease stop you from living your life and being who you are because you are not your disease and take it one day at a time.
I can completely relate to your journey. I got very ill at 18 but wasn’t diagnosed until I was 25. (I am now 45). I had excruciating pain and had high fevers. Turns out I needed an emergency bowel resection. Sadly I had to have an open surgery rather than a laparoscopic one. I haven’t had many periods of remission over the years. Some periods of time are better than others but it always rears it’s ugly head again. I was on Humira for several years and it did help. I got to go off of it after my last resection which was in Jan 2020, but I have been getting sicker again recently. Humira does hurt a lot. I found that it hurt much less injected into my stomach area than thighs. I have my next colonoscopy in a month. I anticipate having to go back on meds. I am tired of being sick, and have to remind myself to count my blessings. I hope you are doing well these days. Thank you for your video.
For me injecting in thighs used to hurt so much, in my stomach didn't feel a thing. I used to take it 30 minutes before out of the fridge before injecting. It's interesting to see how the preps go in other countries, I wish mine would go that way, for me it's a nightmare of drinking 1.5 fluid that tastes like lemon with seawater🤣
I got diagnosed in 2017 and had gallbladder removal and 2 kidney stones. I am on humira after the pill aprizo didn't work. And on top of having Crohn's my daughter got diagnosed with junior arthritis last year.
Oh wow! Listening to this reminded me of my story when i was diagnosed with crohns. It’s so debilitating sometimes but there is always light at the end of the end of the tunnel. I had a surgical feeding tube placed in my stomach cuz I had surgery for crohns
I have had Crohn’s for 24 years, was diagnosed at 23. I have colonoscopies and endoscopy every 2 years, or closer together some years. I have to have picot prep in Australia, it is a lot as I have to have 2 doses due to gastroperesis, it is disgusting stuff. It is not fun at all. When I was 34 I was diagnosed with Rheumatoid arthritis as well. I am in pain constantly and on lots of meds trying to control my autoimmune diseases. The pain is the worst and the way food causes so much pain and toilet trips. I have been on lots of different biologics and infusions over the years. I am on cimzia injections and methotrexate injections.
I went onto a Facebook group called crohn's disease support group. And why did I went onto the group? Well because I have a friend of mine who has this illness and I found out that there are other people who has this illness across the country. And in one post, someone with this illness said that nobody would want to fall in love with person who has this illness. Well let me say this. If hypothetically speaking I had a girlfriend that had this illness. Here's what I wouldn't say to her. I wouldn't say anything that would make her feel bad. Instead, I would say something to make her feel good and encourage her not to give up.
I have gone through three gastrologists in Toronto Canada ....all didn't work for the past 15 years. Even the senior nurse in the hospital has UC but she still flares up sometimes.
I was diagnosed in 2002 had all the procedure you had it's such a hard journey and you need to be so strong. I'm the only person in my family with crohns no ones ever heard of crohns in my family so a first for us. I'm in 43 now so had crohns for 19 years. I have had 3 surgeries and I'm completely off medication as I refused it after all the hospital stays and I made my choice I was so afraid of hospitals. Now only see my gp for regular bloods and my consultants for review. I do take nutritional supplements. I can understand your journey totally be strong you will get through we all will. My first actual food was jelly then mash and then slowly builded up. I have not had humera but another jab while in hospital and always refused my stomach its so painful in the stomach as our stomach is already going through so much pain.
I take bone broth power and salmon and blueberry and A2 milk and goat milk ... etc within a week there was no more blood bleeding in my toilet and after 2 months the digestion are much better
the doctors have talked about me possibly having this but my first stomach doctor appt isn’t until april. i don’t know if i’ve technically had a “flare up” but i have horrible symptoms
I had my colonoscopy done a week before , and they didn't gave me anesthesia or any sedation saying I'm too young (18) . And said it wasn't a painful procedure, so I went fully conscious and yes it was painful.
great video, i work in an abdominal surgery unit so its great to see your point of view and mostly while not in a hospital. btw. s.c injection can be applied in a lot of places and ofcourse the pain is subjective. try to go for the buttocks, might be less painfull.
How bad is the prep ? I get easily nauseous and I’m so nervous I’ve always had nausea and constipation and bloating for years they told me it was IBS 6 weeks ago I had excruciating pain and they told me it was my appendix , I ended up having surgery for inflammation & infection on my large bowel and I’m sure I have chrons but didn’t get diagnosed yet because I didn’t do colonoscopy but I’m wondering if this was a flare up or actually my appendix
Having a incurable illness like Crohn’s disease is a heavy burden and a heavy cross to endure. Now thank goodness I don’t have it but I have a friend of mine who has it and sometimes when it escalates out of control, he gets emotionally upset. One time when he came my apartment, he received bad medical news about Crohn’s disease getting worse and he started crying and I couldn’t stand him crying. So I gave him a hug and assured him that everything is going to be fine. And I said to him,
“Gabriel, don’t let your incurable illness get the best of you. Keep on being hopeful and optimistic in the future remember what it says in the book of Psalms,
‘If today you hear his voice, harden not your heart.’” I even have him on my Our Lady of Lourdes novena prayer list. I even told his mom the same thing.
Just been diagnosed with Crohn's a few days ago. My gran had it so it was in the family.
My CROHNS Story
I was diagnosed 2 years ago at the age of 19 I am now 22 I’ve had my Gaul Bladder removed had one IV Infusion treatment, 2 colonoscopies, 2 endoscopies, 2 MRIs, 11-13 treatment Stelara shots annual blood works check ups so many I’ve lost count I do it every 2-4 months and I’ve also now been diagnosed with Osteoporosis, Fibromyalgia, and Inflammatory Arthritis so many bathroom emergencies and 5-6 accidents and I have an on the go Emergency Crohns bag wipes extra clothes, perfume, medicine, mask, hand sanitizer, hand sanitizer alcohol spray, bathroom access card to show people at the establishments you have a health issue that allows you to always have access to a bathroom and my credit cards and my ID and my insurance card and I have a medical bracelet it’s hard but push to get tests done advocate for yourself get diagnosed take your meds and do your treatments and get support and knowing you are not alone is key just because you look okay doesn’t mean you are okay ask your doctor about anemia because due to the lack of vitamins and nutrients and nutrition you can become vitamin deficient and lose iron and it can cause you to become anemic.
You will hear maybe it’s IBS NO NOPE NO IBS is NOT Crohns you have Crohns.
Cut OUT Lactose completely from your diet no ice cream no milkshakes be careful no milk replace is with almond milk that has NO Lactose and avoid processed and fried foods as much as possible eat grapes, apples with no skins take off the color skin parts eat the apple underneath and eat grapes, drink juice don’t drink soda and blueberries, pineapples, rasberries are all good eat less raspberries than the rest and strawberries are okay avoid everything else and eat sorbets and sherbets and frozen fruit bars and lots of vegetables and salmon and drink lots of water it helps.
My Medications
Stelara (Injection every 8 weeks)
Azathioprine (3 times a day) (50 Milligrams) ( 1 capsule 3 times a day)
Hyoscyamine (As needed) (0.125 Milligrams) (1 tablet every 4 hours as needed for abdominal spasms)
Diphenoxylate (4 times a day As needed) (for diarrhea)
Dicyclome (1 tablet 3 times a day as needed for abdominal cramping) (20 Milligrams)
Omeprazole(1 time a Day in the morning) (40 Milligrams)
Tumeric (1 time a day)
Acetaminophen Tylenol #4 (Codine)(As needed every 4 hours if pain is severe severe)
Anxiety (Symbalta) (1 time a day)
Regular Tylenol Arthritis Strength (4 times a day)
Pregabalin Lyrica (1 Capsule) (3 times a day)
Nature made D3 (5,000 IU) (125 mcg)(2 Capsules every morning once a day)
Duloxetine Delayed-Release Capsules, USP (60 Milligrams) (1 capsule 2 Times a day) (Anxiety/depression)
Sulfalazine (500 Milligrams) (1 tablet 3 times a day)
Vitamin D2 (1.25 Milligrams) ( 50,000 UNIT) (1 capsule once a week every Saturday)
Methocarbamol (500 Milligrams) (1-2 tablets by mouth at dinner right before bedtime) (optional) (muscle relaxer)
Do NOT take anything but Tylenol Arthritis Strength AVOID NSAIDS TYLENOL ARTHRITIS STRENGTH is BEST for people that have Crohns take Vitamin, Vitamin D, Vitamin B12, Calcium, and Zinc.
Look up balance of nature for nutrients and vitamins it will help.
You will have to do steroids such as prednisone it sucks but you will make it through it there is a light at the end of the tunnel the moon face the sweating the anger the mood swings and side effects will not last forever you will get off the steroids and the colonoscopy drinks are hell but once you keep them down and get through the night before the colonoscopy after your colonoscopies life gets better those were the worst parts so far for me the never ending part for me that I’m still going through emotionally is having to do blood work and waiting to here if the levels and blood panel results are still okay it’s nerve wrecking getting a support system is key and it will help throughout the journey.
Remember it will be okay and it is okay to not be okay but don’t let your disease stop you from living your life and being who you are because you are not your disease and take it one day at a time.
Just sending you some love and support even though I don't know you, honey....hang in there young lady, you are so brave!
I recently got daigonosed with crohn's recently .. and watching this for how far it could go ... God bless you dear
Thankyou for sharing!❤
I can completely relate to your journey. I got very ill at 18 but wasn’t diagnosed until I was 25. (I am now 45). I had excruciating pain and had high fevers. Turns out I needed an emergency bowel resection. Sadly I had to have an open surgery rather than a laparoscopic one. I haven’t had many periods of remission over the years. Some periods of time are better than others but it always rears it’s ugly head again. I was on Humira for several years and it did help. I got to go off of it after my last resection which was in Jan 2020, but I have been getting sicker again recently. Humira does hurt a lot. I found that it hurt much less injected into my stomach area than thighs. I have my next colonoscopy in a month. I anticipate having to go back on meds. I am tired of being sick, and have to remind myself to count my blessings. I hope you are doing well these days. Thank you for your video.
For me injecting in thighs used to hurt so much, in my stomach didn't feel a thing. I used to take it 30 minutes before out of the fridge before injecting.
It's interesting to see how the preps go in other countries, I wish mine would go that way, for me it's a nightmare of drinking 1.5 fluid that tastes like lemon with seawater🤣
I got diagnosed in 2017 and had gallbladder removal and 2 kidney stones. I am on humira after the pill aprizo didn't work. And on top of having Crohn's my daughter got diagnosed with junior arthritis last year.
Oh wow! Listening to this reminded me of my story when i was diagnosed with crohns. It’s so debilitating sometimes but there is always light at the end of the end of the tunnel. I had a surgical feeding tube placed in my stomach cuz I had surgery for crohns
I have had Crohn’s for 24 years, was diagnosed at 23. I have colonoscopies and endoscopy every 2 years, or closer together some years. I have to have picot prep in Australia, it is a lot as I have to have 2 doses due to gastroperesis, it is disgusting stuff. It is not fun at all. When I was 34 I was diagnosed with Rheumatoid arthritis as well. I am in pain constantly and on lots of meds trying to control my autoimmune diseases. The pain is the worst and the way food causes so much pain and toilet trips. I have been on lots of different biologics and infusions over the years. I am on cimzia injections and methotrexate injections.
Thankyou so much my don has Crohn’s diagnosed at the same age as you , this helps a lot .
I went onto a Facebook group called crohn's disease support group. And why did I went onto the group? Well because I have a friend of mine who has this illness and I found out that there are other people who has this illness across the country. And in one post, someone with this illness said that nobody would want to fall in love with person who has this illness. Well let me say this. If hypothetically speaking I had a girlfriend that had this illness. Here's what I wouldn't say to her. I wouldn't say anything that would make her feel bad. Instead, I would say something to make her feel good and encourage her not to give up.
I have gone through three gastrologists in Toronto Canada ....all didn't work for the past 15 years.
Even the senior nurse in the hospital has UC but she still flares up sometimes.
I was diagnosed in 2002 had all the procedure you had it's such a hard journey and you need to be so strong. I'm the only person in my family with crohns no ones ever heard of crohns in my family so a first for us. I'm in 43 now so had crohns for 19 years. I have had 3 surgeries and I'm completely off medication as I refused it after all the hospital stays and I made my choice I was so afraid of hospitals. Now only see my gp for regular bloods and my consultants for review. I do take nutritional supplements. I can understand your journey totally be strong you will get through we all will. My first actual food was jelly then mash and then slowly builded up. I have not had humera but another jab while in hospital and always refused my stomach its so painful in the stomach as our stomach is already going through so much pain.
Happy to hear you're in remission!
I take bone broth power and salmon and blueberry and A2 milk and goat milk ... etc within a week there was no more blood bleeding in my toilet and after 2 months the digestion are much better
the doctors have talked about me possibly having this but my first stomach doctor appt isn’t until april. i don’t know if i’ve technically had a “flare up” but i have horrible symptoms
I had my colonoscopy done a week before , and they didn't gave me anesthesia or any sedation saying I'm too young (18) . And said it wasn't a painful procedure, so I went fully conscious and yes it was painful.
great video, i work in an abdominal surgery unit so its great to see your point of view and mostly while not in a hospital.
btw. s.c injection can be applied in a lot of places and ofcourse the pain is subjective. try to go for the buttocks, might be less painfull.
I really want to hear this, but sound is at full volume and I am not hearing it clearly enough.
Wish you will heal your IBS very soon !
It is IBD not IBS a lot more serious
Could you do some food routine and recepies.
I just found out that my bday is on world IBD day. My life is a joke 😭😭
Patient Heal Thyself: A Remarkable Health Program Combining Ancient Wisdom
by Jordan Rubin (Author), Dr. Josh Axe (Introduction)
Was that Toronto hospital lol
I feel sick just thinking about drinking that stuff 🤮 it's not nice at all haha 😂
What happened with u that u gone through colonoscopy
How bad is the prep ? I get easily nauseous and I’m so nervous I’ve always had nausea and constipation and bloating for years they told me it was IBS 6 weeks ago I had excruciating pain and they told me it was my appendix , I ended up having surgery for inflammation & infection on my large bowel and I’m sure I have chrons but didn’t get diagnosed yet because I didn’t do colonoscopy but I’m wondering if this was a flare up or actually my appendix
Hello :) I really love to follow your weight loss journey, because you work very hard ! New subscriber to show support ☺️ love to help each other grow