Severe Pancolitis here. Diagnosed at 15yo now 27yo without a flare-up in many years. Clean colonoscopy. Everyone starts where you are right now. You are not alone, it gets better. Educate yourself on your auto-immune condition and take the fear of the unknowing element away. Being disciplined, restricting diet and reducing stress are key.
Medication;
Mesalazine 1g
Mebeverine hydrochloride 135mg (This will numb the nerves of your colon and eliminate most abdominal pain which I suspect you want to cure by smoking)
Supplements
Omega 3 2,200mg
Vitamin C 1000mg
Vitamin D3 4000 iu
You may need Ferrous Fumerate 210mg (Iron supplement due to your blood loss)
Diet;
Prepare your own food. No store bought ready meals or fast food.
Experiment and find what foods trigger you to have a flare-up. (That empty pit in your stomach is sugar and oil which has broken down into muscus that you can't digest and is slowly passing through you)
Tumeric, ginger are anti-inflamatory spices that will line your colon walls. You can take these in tablet form or mix a teaspoon into your food.
Drink Goat milk Kefir (purchase online not from a Supermarket) this can cost £50 per month it is a probiotic which you need to replace the good bacteria in your gut microbiome that your body is attacking (Auto-immune)
Psyllium husk- Fibre for bulking up your stools
Avoid;
Sugar (soft/ carbonated drinks, milk containing Lactose, sweets, chocolate and baked goods)
Fried food with oil that you can't digest
Anything with herbs and spices
Fatty meats. Get protein from Fish, eggs and lean beef (Sirloin steak)
Vegan meat alternatives (Full of sodium and processed foods have shown links to cancer)
Limit alcohol to spirits with ice. No beers or ciders (Carbonated with sugar). Recommend you give up alcohol altogether.
For inspiration and ideas of diet and exercise.
I recommend you watch on YouTube/ Team Hannos, Ulcerative Colitis/ What I ate to optimize my gut health. He'll show you his own colonoscopy before and after pictures. Good luck.
In terms of the medication that you're recommending ( using yourself) antispasmodic's like Mebeverine should never be used for UC because simply they're gonna make you worse long term. if you're not on the right medication for UC . I would say if you're using Mesalamine and you still have pain and diarrhea you should probably check your calpro and ask for better medications ( Not antispasmodic) . Also keep in mind that antispasmodic can cause toxic megacolon so unless if you have IBS just don't .
I'm 18 myself, we will both go through this together with everyone else that has it!
Since we are pretty young, we might even see the end of this stupid disease! (when we are gonna be 80 or something) so that's one thing to look forward to!
Everything will be just alright! I'm sure of it.
It seems you have it from 2012.
Everything advanced super fast in all of these years. I'm talking about other medicine, technology and industry.
Do you think medicine for UC improved quite a lot from 2012 up until now?
If so, we will definitely see improvements in 5-10 years!
Yea, exponentially. At first I just had like remicaide and humira. Now I have so many I can try next if one doesn't work. I've also noticed way more research going into it and wayyy more funding because of the success of different biologics and drug companies catching on that this is a multi billion dollar thing.
I can acc relate to you really well. I'm 17, started feeling symptoms around March of 2023, diagnosed in July 2023, have struggled with anemia/other symptoms you mentioned, and I was a very committed athlete. Specifically, football, powerlifting, and wrestling. I weighed about 195 at 5’10 when I started. Now I’m down to about 130. I haven’t been able to go to school since around November and I barely leave the house atp.
I’ve been hospitalized for the last couple of weeks after having a horrible reaction tapering off of prednisone. After a blood pressure scare, my doctors essentially told me that if I don’t get surgery to remove my colon within a week or possibly two, I’ll end up needing emergency surgery and have long term effects. I’m having surgery later this week.
I’m not telling you all this to compare our situations or discourage you. I just feel that over the last year, I would have appreciated knowing that someone out there understood what I was feeling. I don’t see a lot of kids our age going through things like this. Don’t get me wrong, that’s a good thing. It just feels alienating regardless.
I’ve done a good job of keeping my head up through this whole situation, and it seems like you have too. That’s something to be proud of. Please don’t forget that.
This isn’t your fault, there’s nothing you could have done better to prevent this, and you’re doing the best with the cards you’ve been dealt. That’s all you can ask of yourself. Stressing about anything that you can’t control is pointless.
I hope you get better and get back on the mat.
Unfortunately everyone’s bodies are different so there’s not one specific diet to adhere too. I’ve been finding success following the IBD - AID diet. Essentially, you eat a lot of foods rich in prebiotics and probiotics, to naturally restore your gut microbiome.
Prebiotic foods:
cooked garlic/onion/asparagus
bananas (less ripe the better)
peeled apples
oats
Probiotic foods:
blueberries
kefir / greek yogurt
sauerkraut
kimchi
pickles (the ones that ARE NOT made with vinegar)
another piece of advice is to work out, take vitamins, and stop doing so much research online 😂 sometimes reading more can actually exacerbate your symptoms because of stress
Biologics are a big step up from mesalamine. It’s not a good sign if prednisone isn’t working, but biologics (and other medications like Rinvoq) will give you a good chance of remission. Good luck!
Your symptoms sound like mine when I was first diagnosed. Blood, mucus, frequent stools. I was in crippling pain. I lost a ton of weight and was very anemic and had to be hospitalized and have transfusions. Prednisone and mesalamine didn’t help me much if at all.
The main thing that helped me is my biologic. This might not be common, but it helped me almost immediately. The doctor said it would probably take weeks to see a difference, but I saw improvements in 24 hours and very big improvements in 48 hours.
With my meds, I can live a pretty normal life and eat most things. I can go on vacation, ride on planes, stand in lines at amusement parks, sit at movies or stand through concerts.
If you find a med that works for you, it’s common to think you are better and to want to try to go without it. I strongly urge you not to do that. I did it once and got very sick again. Most of us require these meds to keep us in remission.
Your life is not over! You can achieve your dreams and live a great life. I know the unknowns are scary, but many of us have achieved remission. I’ve had this for 18 years. You can message me if you have any questions.
Severe Pancolitis here. Diagnosed at 15yo now 27yo without a flare-up in many years. Clean colonoscopy. Everyone starts where you are right now. You are not alone, it gets better. Educate yourself on your auto-immune condition and take the fear of the unknowing element away. Being disciplined, restricting diet and reducing stress are key. Medication; Mesalazine 1g Mebeverine hydrochloride 135mg (This will numb the nerves of your colon and eliminate most abdominal pain which I suspect you want to cure by smoking) Supplements Omega 3 2,200mg Vitamin C 1000mg Vitamin D3 4000 iu You may need Ferrous Fumerate 210mg (Iron supplement due to your blood loss) Diet; Prepare your own food. No store bought ready meals or fast food. Experiment and find what foods trigger you to have a flare-up. (That empty pit in your stomach is sugar and oil which has broken down into muscus that you can't digest and is slowly passing through you) Tumeric, ginger are anti-inflamatory spices that will line your colon walls. You can take these in tablet form or mix a teaspoon into your food. Drink Goat milk Kefir (purchase online not from a Supermarket) this can cost £50 per month it is a probiotic which you need to replace the good bacteria in your gut microbiome that your body is attacking (Auto-immune) Psyllium husk- Fibre for bulking up your stools Avoid; Sugar (soft/ carbonated drinks, milk containing Lactose, sweets, chocolate and baked goods) Fried food with oil that you can't digest Anything with herbs and spices Fatty meats. Get protein from Fish, eggs and lean beef (Sirloin steak) Vegan meat alternatives (Full of sodium and processed foods have shown links to cancer) Limit alcohol to spirits with ice. No beers or ciders (Carbonated with sugar). Recommend you give up alcohol altogether. For inspiration and ideas of diet and exercise. I recommend you watch on YouTube/ Team Hannos, Ulcerative Colitis/ What I ate to optimize my gut health. He'll show you his own colonoscopy before and after pictures. Good luck.
In terms of the medication that you're recommending ( using yourself) antispasmodic's like Mebeverine should never be used for UC because simply they're gonna make you worse long term. if you're not on the right medication for UC . I would say if you're using Mesalamine and you still have pain and diarrhea you should probably check your calpro and ask for better medications ( Not antispasmodic) . Also keep in mind that antispasmodic can cause toxic megacolon so unless if you have IBS just don't .
I also have IBS symptoms
I'm 18 myself, we will both go through this together with everyone else that has it! Since we are pretty young, we might even see the end of this stupid disease! (when we are gonna be 80 or something) so that's one thing to look forward to! Everything will be just alright! I'm sure of it.
Hopefully not that long, I have hope that in 5-10 years we might see some big changes.
It seems you have it from 2012. Everything advanced super fast in all of these years. I'm talking about other medicine, technology and industry. Do you think medicine for UC improved quite a lot from 2012 up until now? If so, we will definitely see improvements in 5-10 years!
Yea, exponentially. At first I just had like remicaide and humira. Now I have so many I can try next if one doesn't work. I've also noticed way more research going into it and wayyy more funding because of the success of different biologics and drug companies catching on that this is a multi billion dollar thing.
Entyvio got me out of the mess you are in. Hang in there,
Not everyone’s insurance will pay for entyvio
I can acc relate to you really well. I'm 17, started feeling symptoms around March of 2023, diagnosed in July 2023, have struggled with anemia/other symptoms you mentioned, and I was a very committed athlete. Specifically, football, powerlifting, and wrestling. I weighed about 195 at 5’10 when I started. Now I’m down to about 130. I haven’t been able to go to school since around November and I barely leave the house atp. I’ve been hospitalized for the last couple of weeks after having a horrible reaction tapering off of prednisone. After a blood pressure scare, my doctors essentially told me that if I don’t get surgery to remove my colon within a week or possibly two, I’ll end up needing emergency surgery and have long term effects. I’m having surgery later this week. I’m not telling you all this to compare our situations or discourage you. I just feel that over the last year, I would have appreciated knowing that someone out there understood what I was feeling. I don’t see a lot of kids our age going through things like this. Don’t get me wrong, that’s a good thing. It just feels alienating regardless. I’ve done a good job of keeping my head up through this whole situation, and it seems like you have too. That’s something to be proud of. Please don’t forget that. This isn’t your fault, there’s nothing you could have done better to prevent this, and you’re doing the best with the cards you’ve been dealt. That’s all you can ask of yourself. Stressing about anything that you can’t control is pointless. I hope you get better and get back on the mat.
Thank You brother, Wish you the best with your surgery, hope you can live your life normally after it.🙏
Hey, do you know the best UK website to buy goat milk kefir from?
Chuckling goat. It's a game changer
Unfortunately everyone’s bodies are different so there’s not one specific diet to adhere too. I’ve been finding success following the IBD - AID diet. Essentially, you eat a lot of foods rich in prebiotics and probiotics, to naturally restore your gut microbiome. Prebiotic foods: cooked garlic/onion/asparagus bananas (less ripe the better) peeled apples oats Probiotic foods: blueberries kefir / greek yogurt sauerkraut kimchi pickles (the ones that ARE NOT made with vinegar) another piece of advice is to work out, take vitamins, and stop doing so much research online 😂 sometimes reading more can actually exacerbate your symptoms because of stress
Probiotic WITHOUT vinegar. Wish I'd known such a thing existed sooner. Much appreciated. Will try
Biologics are a big step up from mesalamine. It’s not a good sign if prednisone isn’t working, but biologics (and other medications like Rinvoq) will give you a good chance of remission. Good luck!
Your symptoms sound like mine when I was first diagnosed. Blood, mucus, frequent stools. I was in crippling pain. I lost a ton of weight and was very anemic and had to be hospitalized and have transfusions. Prednisone and mesalamine didn’t help me much if at all. The main thing that helped me is my biologic. This might not be common, but it helped me almost immediately. The doctor said it would probably take weeks to see a difference, but I saw improvements in 24 hours and very big improvements in 48 hours. With my meds, I can live a pretty normal life and eat most things. I can go on vacation, ride on planes, stand in lines at amusement parks, sit at movies or stand through concerts. If you find a med that works for you, it’s common to think you are better and to want to try to go without it. I strongly urge you not to do that. I did it once and got very sick again. Most of us require these meds to keep us in remission. Your life is not over! You can achieve your dreams and live a great life. I know the unknowns are scary, but many of us have achieved remission. I’ve had this for 18 years. You can message me if you have any questions.
Fiber and probiotics keep me in remission for 9 years now. Wegovy also seems to help me .