When I started the biological medication called Amgevita, my Crohn\u2019s had freshly been diagnosed a few months prior (Oct \u201921), and I was in pain constantly. Amgevita was the first medication I was ever put onto to try, and my specialist (Nurse T) said that I could end up having to try a few different medications before we found one that worked well for me. <\/p>\n\n\n\n
For the first few months, it worked amazingly. I wasn\u2019t in pain anymore and anytime I was, I could easily pin it down to something that I had eaten (my body can\u2019t digest certain foods so I\u2019ve had to cut them out of my diet over time; dairy, whole nuts, anything high in fiber, whole grains, and KFC among other things \u2013 that last one hurt a lot though). I was terrified back then to have anything done for my Crohn\u2019s surgery-wise, so I was ecstatic that I felt great with the first ever medication I\u2019d taken.<\/p>\n\n\n\n
The \u201cmedication honeymoon\u201d period was quick to fade though, because as the months rolled on, I was starting to be in more pain again. It was nowhere near the amount I\u2019d experienced pre-treatment so I boiled it down to unavoidable flare-ups. The flare-ups weren\u2019t super common (once a month maybe), but I brought it up with Nurse T anyway. She said that I hadn\u2019t been on the medication for very long, so she recommended I keep at it for a bit longer while she monitored me with regular testing. <\/p>\n\n\n\n
More months rolled by and as time passed, my flare-ups started becoming more and more frequent. I eventually couldn\u2019t go a single day without symptoms affecting me. I have a few regular symptoms that affect me during flare-ups (other than the obvious ones) like; drowsiness and fatigue, joint and muscle pain, loss of appetite, and weight loss. Something that was strongly abnormal though was the sharp jolts of pain that I was getting in my stomach.<\/p>\n\n\n\n
I kept bringing these abnormally long flare-ups to Nurse T\u2019s attention but she often brushed them off, and for a while, I got incredibly frustrated with the feeling that I wasn\u2019t being listened to. We had an appointment on the 11th of Jan \u201923 (over the phone because of COVID). Because of the pain I have been in constantly, and the stress of having my medication delivered incredibly late over the holidays, I broke down in tears almost as soon as I answered the phone. <\/p>\n\n\n\n
I explained that I was in pain all the time. I wasn\u2019t going to the bathroom as often as I should be, and that most days I couldn\u2019t find the energy to do anything beyond basic self care, basic housework and my job as a carer. My quality of life had reduced massively and I wasn\u2019t doing any of my hobbies anymore because of the pain and how tired I was fighting it. She was very gentle with me, helped me calm down and stop crying, and arranged for several tests to be done over the following two weeks, including a CT scan. She very kindly avoided making me do another endoscopy, which I also appreciated. <\/p>\n\n\n\n
With that single phonecall, a hurricane of appointments and check ups and blood tests were arranged. It suddenly felt very hectic. <\/p>\n\n\n\n
Exactly two weeks later from our last appointment (the 25th), Nurse T and I had another telephone consultation, where she told me that they\u2019d found something on the scans they\u2019d done. The part where my large intestine meets my small intestine had shown to be incredibly inflamed, and while Amgevita wasn\u2019t actively making my condition worse, it wasn\u2019t doing much to prevent this kind of thing from happening. <\/p>\n\n\n\n
I don\u2019t know how to properly explain the wave of relief and happiness that washed over me. I fully expected that if I was ever told that doctors had \u2018found something\u2019, that I\u2019d be overly worried, as I\u2019d expect anyone to be. I was overjoyed to hear that I wasn\u2019t overestimating the pain I was in, though. It\u2019s a weird feeling. <\/p>\n\n\n\n
She said that the best option for me was surgery and that she would arrange a consultation with Dr H (a surgeon I\u2019m very familiar with \u2013 I mentioned him in my last blog). <\/p>\n\n\n\n
I went to see him literally the next day (which was shockingly fast), and he explained further. He said that while there are many uncommon risks that go hand in hand with the surgery, I was sure to get much worse if I didn\u2019t get it done as soon as I possibly could. The area of my intestines that is struggling is sure to get worse, and will inevitably shrink to a complete close; which is of course, very dangerous. I obviously agreed to the surgery.<\/p>\n\n\n\n
What\u2019ll happen is; I\u2019ll be put to sleep with an anaesthetic, my stomach will be cut open down the centre, and the part of my intetsines that is slowly deteriorating will be taken out. They\u2019ll then sew and rejoin my large and small intestine, and after making sure its a decent job, they\u2019ll close me back up. The actual surgery should take two hours. <\/p>\n\n\n\n
The consultation with Dr H was on the 26th, and my pre op assesment is tomorrow (31st Jan). They\u2019ve temporarily penciled me in for surgery in the first week of February, and if all goes well, by this time next month, I should be several weeks into healing. There is also the potential to have several years without my Crohn\u2019s affecting me. I\u2019m also going to have a cool new scar to show off and be proud of.<\/p>\n\n\n\n
There are risks, of course, just like there is with every major operation. If any of these happen, I\u2019ll be taken back into surgery for a round two. A stoma bag could be likely if round two doesn\u2019t work. I am choosing not to worry about that right now though, as there is still hope this could work properly the first time. It\u2019s definitely more in my nature to worry, but this surgery has the ability to get rid of all of the agony I\u2019ve been in for the past few months and I\u2019m looking forward to that immensely.<\/p>\n\n\n\n
I am honestly overwhelmed with how fast everything has happened. I feel like I\u2019ve been swept away with tests and doctors and diagoses again, just like when I was first trying to get diagnosed with Crohn\u2019s to begin with. It\u2019s an incredibly weird feeling. It\u2019s only been three weeks since it all kicked off and it feels like its been months, or atleast it should have been. <\/p>\n\n\n\n
Cerys, out!<\/p>\n","protected":false},"excerpt":{"rendered":"
When I started the biological medication called Amgevita, my Crohn\u2019s had freshly been diagnosed a few months prior (Oct \u201921), and I was in pain constantly. Amgevita was the first medication I was ever put onto to try, and my specialist (Nurse T) said that … Continue…This is All Happening So Quickly<\/span><\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":1657,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[14,400],"tags":[461],"class_list":["post-1351","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-family","category-health","tag-health"],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"https:\/\/i0.wp.com\/cerysbailey.co.uk\/home\/wp-content\/uploads\/2023\/01\/IMG_20230116_154931-scaled.jpg?fit=2560%2C1440&ssl=1","_links":{"self":[{"href":"https:\/\/cerysbailey.co.uk\/home\/wp-json\/wp\/v2\/posts\/1351","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cerysbailey.co.uk\/home\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cerysbailey.co.uk\/home\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cerysbailey.co.uk\/home\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/cerysbailey.co.uk\/home\/wp-json\/wp\/v2\/comments?post=1351"}],"version-history":[{"count":9,"href":"https:\/\/cerysbailey.co.uk\/home\/wp-json\/wp\/v2\/posts\/1351\/revisions"}],"predecessor-version":[{"id":1652,"href":"https:\/\/cerysbailey.co.uk\/home\/wp-json\/wp\/v2\/posts\/1351\/revisions\/1652"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cerysbailey.co.uk\/home\/wp-json\/wp\/v2\/media\/1657"}],"wp:attachment":[{"href":"https:\/\/cerysbailey.co.uk\/home\/wp-json\/wp\/v2\/media?parent=1351"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/cerysbailey.co.uk\/home\/wp-json\/wp\/v2\/categories?post=1351"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/cerysbailey.co.uk\/home\/wp-json\/wp\/v2\/tags?post=1351"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}