Popular Post GPSguru Posted November 5, 2021 Popular Post Share Posted November 5, 2021 After a month which included eye surgery and zillions of test for my Colitis, I have finally been let out again ! Right now, Monday is looking good for a morning weather window .......... @Odyssey is totally correct in the fact that Ulcerative Colitis is a shocking disease as it really affects your lifestyle in a massive way, not only do you have to be careful what you eat and drink, also running to the pan up to 30 times a day means you can't stray too far from the house. The consultant assured me that he was going to find a solution to put me in remission, and TBF he is as good as his word. The later part of October was spent doing zillions of tests. A camera showed that I was still suffering from very severe inflammation, so it was obvious that the biological drug had ceased to be effective, this was confirmed when anti bodies (which kill the drug) were found in my blood, so I guess some of my immune system still works ! So, after numerous blood tests the consultant told me that my general health was better than excellent, and he has prescribed another biological drug (tablet form this time) that is at the upper end of the immunosuppressant drugs, however, there needs to be a 6 week break before I can take it, so he prescribed what he called, 'a heavy weight corticosteroid' for the 6 weeks. TBF I am 2 days in on the steroids, and the colitis symptoms are 99.9% better, so long may it continue. The new biological drug arrived from the hospital pharmacy today, 3 months worth, there has been a slight delay as they don't keep it in stock due to it being rather expensive, almost £700 per box (one month) and if it works I will be on it for up to 3 years at a cost of about £8K per annum. Well, at least I am getting my monies worth out of the NHS ! If the weather holds, I am really looking forward to getting the boat out on Monday ........... fingers crossed. suzook12, mike farrants, Andy135 and 5 others 8 Quote Link to comment Share on other sites More sharing options...
Saintly Fish Posted November 5, 2021 Share Posted November 5, 2021 Glad to hear you are back in action Ian.👍🏻 GPSguru 1 Quote Link to comment Share on other sites More sharing options...
Andy135 Posted November 5, 2021 Share Posted November 5, 2021 Excellent news! You sound like you've definitely got the spring back in your step. Mermaids and barmaids watch out! 😉👍🤣 GPSguru 1 Quote Link to comment Share on other sites More sharing options...
Odyssey Posted November 5, 2021 Share Posted November 5, 2021 That’s great news 🙂 The weatger does indeed look good but I’m working sadly…. Im bring boat back to Cardiff today but the temptation for a last trip to Celtic deeps was strong…. However 14 double figure cod caught between 5 boats in one day off Cardiff is pulling me back…. The channel is starting to fish well and I didn’t get out last season, the one before was cut short due to illness so time to hopefully feel that nod nod of cod. Grest that you have a good consultant and are looking after you. At least no chance of Covid out on the wrecks! Hope the fish have missed you and are wanting to say hi to your lures 🙂 or baits for the bigger ones! Quote Link to comment Share on other sites More sharing options...
Captain Sensible Posted November 5, 2021 Share Posted November 5, 2021 Long term suffer of Crohns/Colitus here am on Methotrixate tablets and Adalimumab injections. Don’t know if you have looked into diet but the SCD (specific carbohydrate diet) has helped me in the past. It’s quite hardcore and there is a period of adjustment- cravings - for carbs. Glad you are sharing as its one of those hidden illnesses and while I have so many - - shit my pants in public humorous stories - that I do have to laugh about - running to the toilet can be embarrassing as a grown up. Get that inflammation down and kept in check - good luck 💪🏼 GPSguru, Andy135 and Saintly Fish 3 Quote Link to comment Share on other sites More sharing options...
Odyssey Posted November 5, 2021 Share Posted November 5, 2021 20 minutes ago, Captain Sensible said: Long term suffer of Crohns/Colitus here am on Methotrixate tablets and Adalimumab injections. Don’t know if you have looked into diet but the SCD (specific carbohydrate diet) has helped me in the past. It’s quite hardcore and there is a period of adjustment- cravings - for carbs. Glad you are sharing as its one of those hidden illnesses and while I have so many - - shit my pants in public humorous stories - that I do have to laugh about - running to the toilet can be embarrassing as a grown up. Get that inflammation down and kept in check - good luck 💪🏼 My mum has UC and had had it for nearly 23 years. Started when I was 15 so although I’ve not got it myself I can understand the issues it’s causes… Its more common than people think. It’s one of those “invisible disabilities” that can easily get overlooked… Hats off to you guys for keeping on going and getting out on boats etc. Takes some determination to not let it get you down! GPSguru 1 Quote Link to comment Share on other sites More sharing options...
GPSguru Posted November 5, 2021 Author Share Posted November 5, 2021 (edited) 14 hours ago, Captain Sensible said: Long term suffer of Crohns/Colitus here am on Methotrixate tablets and Adalimumab injections. Sorry to hear that Captain. This hit me about 3 and half years ago, and the consultant is determined to try and find a solution that puts me into long term remission. I was on adalimumab (amgevita) weekly injections which is twice the recommended dose, however, after a period of 4 months it seemed to be working by relieving the symptoms by 50%, but I still had to be mega careful with my food. The blood tests I have just had showed that I had quickly developed antibodies to fight the drug, so its effectiveness was getting less and less. Extremely high levels (60mg) of corticosteroids (Prednisolone) has worked for me in the past, but the remission has been short term (6 weeks) and then it kicks off again. I am currently on Pentasa (permanently) and a 'heavy weight' dose Budesonide (a glucocorticoid) for 6 weeks, then I will be going onto Tofacitinib (Xeljanz) to see if that kicks it into touch. Right now, the Budesonide seems to be working very well indeed, in just 3 days. Yes, you are right, it is a 'shit' disease 🤣 Edited November 5, 2021 by GPSguru Quote Link to comment Share on other sites More sharing options...
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