My life with Ulcerative Colitis

[@jacobsIBD]

Start thriving with IBD: kneecapmedia.eo.page/bn5h5 This will take you to a free information pack detailing how I stay healthy and productive with IBD.

[@pagey1950]

Everybody suffering from ulcerative colitis needs to see your account of your experiences. You've described exactly how I felt and thought before and after I was diagnosed recently. I'm 74 and have been pretty free of illness all my life. You're right - it's tough. Thanks, Mate.

[@jacobsIBD]

Thank you so much for the comment and joining us here on the channel! I hope things aren’t too unforgiving for you at the moment, there will be better days ahead.

[@Andres-mr6ev]

Are you symptom free? How did you get there?

[@soulstice99]

Really well presented story. Praying for your full recovery. Ameen

[@needsmorebass94]

Thank you man. This really helps me feel not so alone. Small rural area makes this feel very isolating.

[@jacobsIBD]

@@needsmorebass94 thanks for the comment! Hope you are keeping well, isolation can be rough, you could always join my discord if you wana have some people to talk to.

[@shanewise1359]

Thank you everything you said I’m going through right now 😢

[@jacobsIBD]

Hope you feel better soon

[@reginaedgin4937]

I just got diagnosed with UC a month and a half ago still in my 1st flare..thanks you im feeling so validated in what has been going on with me physically and mentally... ....And you've managed to make me laugh about it. 😅 Subscribed!! Peace & blessings from the USA

[@jacobsIBD]

Thanks for the comment! Hope you will get out of your flare soon! There will be better days.

[@colinburt2312]

Hi thank you very much for your excellent explanation your of IBD, I have just been diagnosed with the same problem I am 72 years old, Healthy all my life suddenly after my wife died I have the same symptoms you describe and I did not understand what was going on, fearing the worst I had the sense to go to the doctors who sent me for the camera up the rear, She explained why, but not in laymen’s terms. I found your experience and the way you explained it (in understandable English) in a weird way a comfort I now know its not the end just an obstacle and containable. Thank you again

[@jacobsIBD]

Hi Colin, Thank you for your comment. I am grateful you found my video useful. I hope you manage to get out of your flare soon! Sorry to hear about your recent unfortunate circumstances, there will be better days ahead.

[@Wokewan]

Ahh brilliantly said Jake. Thank you so much for putting your experience with UC out there. You really don’t know how much you are appreciated here😅 Everything that you have described is what our son has been experiencing. The blood… oh my goodness… the blood and trying to provide a stool sample when it’s just liquid! Also the fear of not knowing what is causing the pain. So glad that you are doing well on the meds and healthy lifestyle. You look really well! Our son is being weaned from the prednisone by tapering down and has started a routine of Pentasa and Aza meds. He’s also been lifting weights and has gone back to playing tennis for the first time since last October 👍 Quite a journey!

[@jacobsIBD]

Thank you so much! I am happy my experiences can be of help. Hope your son is feeling ok. I know how rough prednisone can be. That's great he is been keeping active during this time!

[@Calebstromberg]

I’ve had Chrohns for almost 10 years now. Been in a flare the past 2 after prednisone stopped working. Appreciate you telling your story. Let me know if you ever want to podcast and talk about this or anything along those lines!

[@jacobsIBD]

Thanks! I may take you up on that in the future. I did try some podcasts talking with other IBD patients on my other channel, but my other channel is quite broad and it did t really get watched. So perhaps it may work better here! I may even reupload that first podcast here now you mention it 😅

[@Calebstromberg]

@@jacobsIBD perfect, let me know. I’m always looking to branch out and try new things. I’ve got plenty to tell lol.

[@jacobsIBD]

@@CalebstrombergLet's organise a time over discord, hit me up on my new server and we can arrange a time that works for both of us. discord.gg/3hATUR2hdZ

[@maryswanson9982]

Thank you so much. My flares are much milder than yours, but I understand a lot of the feelings you’ve had.

[@markmcla]

Thank you Jake for sharing your ulcerative colitis story. My story was similar to yours in many ways. I also received inflectra while in the hospital, and within 12 hours I started to feel dramatically better. Two months later I was hiking and playing basketball again. But after the stressful Christmas Holidays, I experienced a minor flare. I haven't produced antibodies to inflectra, so I'm still receiving inflectra infusions. Thankfully, prednisone pills and mesalamine enemas put me back in remission. I'm a big fan of the liquid mesalamine enemas because they work directly on the inflammed tissue. My long term hope is to eventually replace inflectra with occasional hyperbaric oxygen treatments, and continue to use a maintenance treatment of mesalamine enemas. I think this would most safely treat the body both locally with the enemas, and entirely with the hyperbaric oxygen. We'll see! Anyway, I wish you continued good health!

[@jacobsIBD]

I was shocked when my body was reacting to the IV so fast. From talking to others, they mentioned it could take weeks to start seeing any effects. You could always try altitude training in the mean time. It will have a similar effect to a hperbaric treatment. It's pretty much reduced oxygen whilst doing some cardio. It can increase your red blood cell count and help with recovery!

[@markmcla]

@@jacobsIBD Hiking in the mountains is great for recovery and hiking helps to maintain a positive spirit. Thankfully I live in Southern California which is close to many mountains. I've already been hiking Mt Baldy, a 10,000 ft mountain. (There's still some snow at the top!) Later this summer I hope to hike and fish in the Sierra Nevada Mountains. And maybe I'll catch and eat some trout from one of the alpine lakes. -I'm sure that will make my gut happy! Take care!

[@jacobsIBD]

@@markmcla That sounds like an amazing hike! It's all seafront around me, a bit hilly but nothing like being in the mountains! I love the sound of your plan later this summer. Sounds exciting!

[@zselizabethtoth]

Many people said in comments under carnivore diet videos that their UC got better or healed. I would listen to them and give it a go

[@fstognev]

also another question, have you ever tried 'medicinal' cannabis , because i think personally it really helps me with stress and mindset and I'm interested if you personally have tried it.

[@jacobsIBD]

I used to be a big pot head. I have never had 'medical' cannabis though XD. I am not sure how much it really helped me or not. I was in and out of flares when I was big into weed, and I would find after a session I would bleed in the toilet, probabaly just because I was flaring, but I began to associate getting high with flaring. I haven't touched weed in 4 years now.

[@fstognev]

​@@jacobsIBD yeah I understand that too , I had to try and see if it made a big difference by eating the same things and smoking and not smoking and I've found that it doesn't cause any more blood or anything like that but it really helps with appetite and mood in moderation for me but it's subjective ofc

[@vanessavega2665]

Hi Jake, I've been dating a guy for a month and he just told me he has UC. I was totally ignorant about this topic and I really appreciate you telling your story. Any tips for a woman on dating a man with UC would be much appreciated!!! There isn't much out there regarding this specifically. I like him a lot and this hasn't deterred me. I just want to know more what may or may not be good for dating him.

[@jacobsIBD]

Hey thanks for your comment! I will say that being with my fiance throughout my diagnosis has been a big source of support for me. Sometimes IBD can get you down bad mentally & physically. Personally I found myself quite reserved and tended towards isolating myself during flares. I know others may not react the same way, but during a flare your partner may behave a bit differently since it can be quite a trauma behind the scenes.

[@fstognev]

wanted to ask a question about how stress and how your mental state affects your flares and UC , for me i am currently in a flare however if im distracted and not thinking about it i feel better , but recently i had panic attacks about UC and thinking horrible things and it is such a difficult condition to understand and deal with especially understanding it at first.

[@jacobsIBD]

Flares always take a toll on my mental health. I still get worries now even though I am not flareing. Remembering the feelings I went through, and the blood in the bowl, it causes a mental trauma. Like you mentioned, when I was distracted i felt better. It's a tough one, but it teaches some mental strength! We must take the positives from these experiences.

[@JamesKing2understandinglife]

Try the carnivore elimination diet immediately!!!!!!!!!!!!!!!!!!!!!

[@z24-i9k]

Hi, Jacob.my child is suffer with uc she had taken pentasa that is mesamiline for a two month after she finished the pill she was get relief for two or three weeks,after a while she saw blood and begain the pain again .I don't know what to do ,now I am trying to help her by reading books focusing on best food for uc .Jacob will u advices me fo my child.she is nighteen yrs old.

[@kneecapjake]

You should contact the IBD specialist and tell them everything. They can make an judgement whether its time to try another medication to stop the flare.

[@jacobsIBD]

My advice would be to speak to your healthcare provider about what other medications she could use. I feel pentasa never really fully got me out of my flare. In the mean time, sleep, exercise and nutrient dense foods will help.

[@ktpedigo8799]

Do you ever have blood and mucus on influximab? And what dose and frequency are you on?

[@jacobsIBD]

@@ktpedigo8799 I have had mucous, but so far no blood. (touch wood)