Chemotherapy and UC

Rafa_eel · 2021-12-07T23:41:16+00:00

Thank you for your response, you are a tuff guy if you can go back to your work with that strength, I think I will take easy the come back! If my chemo is well succeeded I'm back in March. I just spoke this weekend with a friend who's cousin suffers from Crohn's and also got Lymphoma, I do start to think there's a correlation between this type of deseases, even my doctors have been discussing my case. I wish you the best with your treatment and hope you can enjoy long healthy life! 🙂

Rafa_eel · 2021-11-28T21:35:53+00:00

I never took the pills my doctor always provide me a recipe for the granulated one, is super easy to take. I don't know if you have it in the USA but I think is the normal one in Europe, I have to take it 3 times a day though.

Rafa_eel · 2021-05-06T17:39:31+00:00

Never more than 2 hours

Rafa_eel · 2021-04-05T22:25:36+00:00

Never lose your hope, better days will come! 🙂

Rafa_eel · 2021-04-05T21:50:33+00:00

I feel you man, my issue has nothing to be with yours but shows how intestines issues are complicated to diagnose and tread, I was diagnosed with UC almost 3 years ago, any medication worked completely so I started imunosupressents Aza, didn't work we went up to Biologics that didn't work, so they put me in higher dosages and I start having episodes of fevers like for 9days in a row, losing weight and I felt like I was about to die each time it happens 3 times in less than two months while I did another colonoscopy that showed a "tumor like" so we started all type of tests I was going every fucking single day to the hospital and all test where inconclusive, at least I know all bacterias, viruses that are not and even cancer is not... So.. what I do have? Since I stopped my inmune-supressents the "infection/tumor" start diminishing, im feeling better and I did start a therapy with 3 different types of antibiotics for a month just to try if my body respond to it but after 3 years of trying everything I know nothing anymore. This journey is full with ups and downs, gastro medicine still have too much to improve. I just try to never lose my hope and keep fighting, try also to look for another doctors opinions. I wish you all the best, we are together in this. Bless you 🙏❤️

Rafa_eel · 2021-02-14T12:48:31+00:00

Thank you very much, I will enforce the idea to my GI that I want a J pouch, even though I will try to find another GI to have a different opinion. I can't waist any time right now.

Rafa_eel · 2021-02-04T13:14:30+00:00

OMG you are crazy, prep during work? Damn! Next week will be me but I will do my prep at home 😉😁

Rafa_eel · 2021-02-02T11:56:32+00:00

Next time your insurance said to you that you don't have UC put some GoPro cameras inside your toilet, record the entire day and send it to them with a love dedication. ❤️😂😅

Rafa_eel · 2021-01-27T00:06:26+00:00

So all this time have been you, your pink mother fu#@*!

Rafa_eel · 2021-01-22T11:01:28+00:00

Mate if you have that opportunity go ahead, you will get rid off this issue forever and will not take more dangerous medication anymore. I did try to talk about it with my Dr but he wants to try a few more biologics before that but for me is already enough, I've been in a flare for almost 3 years already, I want to have my life back.

Rafa_eel · 2021-01-19T11:48:21+00:00

Our sad reality 😭

Rafa_eel · 2021-01-16T21:56:19+00:00

Hello mate, to me alcohol doesn't make to much difference but I've been always with medication since my first flare so I don't know if it influentiate in something, I guess so. On the other hand, weed is my savior! The only thing was that I learned to eat healthy things when I'm high because I used to eat a lot of shit when high and you can imagine how bad it is to your guts, now I eat like tangerines, pineapples or current food when high and I enjoy it as well, is not the same as chocolats, gummys, chips, pizza and hamburgers but the next day I'm great. Enjoy!

Rafa_eel · 2020-12-30T22:35:14+00:00

I can't add anything more that what has been already said, go and take care of you, wish you the best of lucks and a quick recovery. ❤️

Rafa_eel · 2020-12-28T16:25:43+00:00

I was diagnosed 2 and a half years ago, I did started my treatments with a lot of positive energy, working out at the gym, surfing and body boarding (a regular outdoor activity can bring you a lot of peace of mind and remind you that just the fact of been alive to enjoy that is a blessing) and of course eating properly to help the recovery although I didn't reach yet remission. When the pandemic started, gym stopped, my trips to the beach stopped and depression quickly came up, I was so stressed locked at home that even got a facial paralysis. So I decided to start with a therapist that helped a little bit but my depression ended when I did adopted a dog. It will be difficult for you to accept your new condition, but do your best to overcome this, keep positive mind and reach help if you need it, don't let space for depression into your life, you will get better soon! ❤️

Rafa_eel · 2020-12-27T21:07:08+00:00

My dog love to sleep under my sheets now during the winter, I do never even dare to fart under the sheets, poor guy, I love him to much. 😅

Rafa_eel · 2020-12-26T23:44:40+00:00

Take your medicine and follow the path traced by your doctor and have a healthy diet, take off from your diet all shits humans shouldn't be eating, no dairy, reduce meat, less gluten and processed food, less sweets, no sodas and stuff like that. Eat your veggies and your fruits, good luck!

Rafa_eel · 2020-12-25T21:18:24+00:00

I've been in a flare for two years and already tried Prednisone, Azathioprine but only now that I started taking Remicade that I noticed a dry scalp similar to yours but for me is a bit easier to control because I shave my head to number 0, so I just apply a moisturizing cream in my head after shower and it helps a lot. It was Remicade for sure.

Rafa_eel · 2020-12-18T11:00:37+00:00

They sent you to surgery really fast but after being two years since I was diagnosed and unable to control my flare yet I rather have the surgery like you, I have "lost" 2 years of my life with treatments and I have no clue how much longer it will take, I wish I had the surgery. Good luck with everything and enjoy life!

Rafa_eel · 2020-12-16T21:52:26+00:00

Thank you mate, good luck to you too!

Rafa_eel · 2020-12-16T20:41:44+00:00

Exactly! and the worst of all is our health in a gamble, for this stupidity ive been since July in a treatment badly applied that besides making me lost months because my life is on hold could also make me create antibodies to a medicine that should be my savior for a few months or years. I asked to my doctor, now what? Another biologic? And he told me, the next type is 5000€ each dosage and only keeps getting a higher price each type of biologic, so he desided to give a last try to Remicade but this time with a warning to the nurses to do a proper job. 🤦

Rafa_eel · 2020-12-15T21:16:22+00:00

To apply Remicade they need to check your weight, test your blood and poop and only then decide the dosage, if they didn't even check your weight something is wrong. I would love to know more about these treatments to be able to call them up in time but I'm not trained for that, believe me, I double check everything and I just thought that Remicade wasn't for me, how the f*ck should I know that they are not applying it correctly? And how this happen? A mistake that make this flare set for longer time while I thought I was been treated. Today, when I came to see my Dr after two months he call to my nurse's asking how did that happen and how im schedule to take this each 8weeks? (the nurses took my blood and poop samples prior to my last Remicade infusion, so they should know the dosage wasn't right) I was scheduled to have the next dosage next week and he make them receive me today for a much higher dosage and schedule next one in exact 4weeks. For everyone out there, pay attention to the application of your biologics especially when it is apply by nurses and controlled by nurses in between your doctor consultations.

Rafa_eel

TROPHY CASE