Luckily I managed to rest all of Tuesday and sleep well during the night, despite going to bed feeling rather anxious that I would wake again with similar pains, but I tried my best to push these fears to a side, to try to avoid stressing myself out. I am pleased to be able to share that luckily it worked, and I slept the night without any pain attacks.
Wednesday 21st April and I’m up, in my comfy clothes again and sitting in the car on the way to the hospital. The doctor had written on a piece of paper so I would remember, that I was to be back at the hospital between 9-10 am for an ultrasound scan at the gastro/surgical ward (I think it was called something like that). Unfortunately the traffic was quite bad so I was at the hospital at about 9.10. There was a different kind of life in the hospital today than the previous morning in A&E, but despite there being more people and more activity, it felt strangely calm. There was a lot in place to make it a safer environment during covid times, like sanitisers and plenty of floor markings to encourage the right spacing between people and all the other covid safety reminders. I was to go up to floor 6, now this is where time felt so slow. Some of the lifts were closed and there were restrictions in place, max 4 people per lift. Obviously I am thankful for this, however, there were a lot of people wanting them so the queue was long, and the energy wasn’t available for me to take the stairs, so unfortunately this took me about 20 minutes of standing before I got up to the ward I was meant to be in. It was now 9.30 when I finally got to where I needed to be, and I was met at the door by a lovely nurse. She showed me the waiting room and said she would get back to me. So there I sat, with one other woman already waiting before me. At least this waiting room had a window, and I got a chair right by it so I could look at the cityscape in front of me. Slowly the waiting room filled up, one after another, and slowly one by one the people who came in after me got called out. Eventually the nurse came to me and told me “Unfortunately they didn’t book you in so I’m trying to get this sorted for you. Hopefully you won’t be waiting too long.” So there I was, again, just sitting and waiting without knowing anything. Worst thing about this was that because I had been told to come in between 9 and 10, I stupidly thought I’d get seen quick, and therefore didn’t bring my book or anything else with me to read. An hour went by and I finally got called to see the doctor. I entered the room and found a doctor on the phone, a nurse or doctor (I genuinely have no idea who he was) on the computer, and the lovely nurse was with me too. Eventually the doctor got off the phone, and with a very stressed and not really interested attitude, half asked what was wrong. “Great, time to tell the story again” I thought, and so I did, although he kept interrupting me, and talking over me and eventually I just felt like there was no point in me trying to tell him a thing. Eventually I got to the part about my history and told him I have ulcerative colitis and have had surgery to remove my large intestine, and for a split second he actually looked at me, and responded to me with a slight feeling of respect. This is when I saw the penny drop for him too “aah yes, you are the one who probably has gallstones” he said. Fantastic, he was the doctor who came with that diagnosis yesterday then. “A lot of people with ulcerative colitis suffer from gallstones, have you had bloods done?” he said to me. I didn’t really know how to respond to that as that “diagnosis” just didn’t sit quite right to me, so I carried on “yes, I had bloods done yesterday.. and well, I would like to mention that my dad and sister both have a hiatus hernia too..” Now, this reaction nearly had my tears appearing. The doctor scoffed “Ha, how old are you?” Now I know what he was trying to say here, because a lot of doctors want to say that you can’t get a hiatus hernia so young, so I was happy to be able to reply “Well I’m..(not gonna lie, I did totally forget my age here for a good 5 seconds) I’m 32. But my sister is 29 and has it and my dad was diagnosed in his early 20’s.” I saw him sort of roll his eyes, so I looked over to the nurse who became my safety net and said “My mum wanted me to mention this, because she felt it was important as we thought it sounded quite similar and could lead to other ideas for a possible diagnoses.” The nurse gave me the kindest and warmest smile, and said “isn’t your mum good thinking of that, that is a really good idea.” The doctor got up and asked me to lay down so he could examine my stomach, so I did and rolled up my top. I then realised he spotted my bag and he sort of said a little under his breath “wow” or similar reaction as he looked at my stomach and the lack of scaring, or small amount of, and for a split second again I saw a bit of respect in his face and that he was impressed. This didn’t last long and he started pressing and feeling around on my stomach. “So, is there any family history of gastric inflammation/inflammatory bowl?” I can’t remember the exact wording he used but it was along the lines of that. “Uhm no.. not that I am aware of I don’t think..” I answered a bit carefully. In what I can only describe as a snotty, condescending tone he quickly scoffed and said “Well how can you talk about a hiatus hernia in that case?” I nearly started crying now, my eyes were actually filling up, and again I found myself looking over to the nurse for a bit of strength and support and found my voice to say “well.. I mainly think of inflammatory bowl as the lower part of the stomach as that is what I have, but I am wrong really.. yes we do have a family history of it in that case..” I mean seriously, what was his problem? All I was doing was trying to give him as much information as I possibly could about my health, and family health that I thought could be related or useful to know, and he just kept putting me down, making me feel ridiculous and just.. I don’t even know, but all I wanted to do was leave the room, go home, hide away and cry. I sat back up again and he said “we’ll get you a scan and see, and give you some medication.” And then there was silence as he looked over to the guy by the computer. Apparently that was the end of it, because the nurse got up and pulled the curtain and opened the door. “As soon as that’s in the system I’ll get you booked in for a scan at the first free slot. If you wait in the waiting room again I’ll let you know as soon as it’s sorted.” So off I went to sit on the chair in the window again, because luckily that chair was still empty.
There were two women sat in the waiting room now, one who had clearly had bloods done, but the other hadn’t. They were chatting away, and then I realised… they were there together. I was so upset by this, it was so unfair. I needed someone in there with me too. Obviously I could hear everything they were saying as it was only us in this waiting room, and I found out that it was the girls mother-in-law, and she worked in the neighbouring ward, although it was her day off this day. I find this so unfair, why should she be allowed company just because the person works at the hospital? Why should she get some extra help and shortcuts around things? There was an influx of nurses, who all knew them, that kept popping in for a chat with them, and the mother-in-law kept nipping out to find out what was going on. I wanted to bust out crying on the spot. I needed company there too, I needed the physical support. Yes I had plenty of company and support via my phone, luckily, but sitting there, experiencing someone else getting some sort of “special treatment” just made me, again, feel so awful. As if the doctor hadn’t done a good enough job of that himself already, now there was this too. No one should get special treatment or be allowed company during covid times even if they work at the hospital, that really isn’t fair, we are all vulnerable and weak and in need of that. I still can’t really get over this either, it really did upset me.
Anyway, it got to 11 am and the nurse popped back and told me I was booked in for 12, yikes, a full hour.. “you can go for a walk if you want, or wait in the café, just make sure you go to ward 2 for 12, I’m sorry it isn’t sooner” she said in a lovely tone. I was tired, I was upset, I was weak.. I hadn’t even attempted to eat breakfast either “can I have something to eat?” I asked “No, only water I’m afraid”.
I didn’t know what to do, home wasn’t close, I had no energy, I just wanted to walk out the doors and disappear, but I knew I couldn’t do that either, but the situation just really wasn’t helped by the unfairness of having someone with you or not.
12 finally came and I was down waiting for my ultrasound scan. A lovely young woman calls me in and starts asking me what I was there today, so again, I told her the full story, the various diagnoses or concerns that were raised, and where the actual pain was, and off we went. She was very silent, so I asked if she could see anything or if she would know if there was something off. “I’ve just scanned your lived and bottom of your lungs and they look good. I promise I’ll tell you if I see anything.” I’ve never had an ultrasound scan before, and I must say, it was pretty exciting seeing my insides on the screen. It almost looked a bit like a really old black and white surreal arty silent film or something. I wish I could have recorded it as she was doing it. Anyway, she had a good scan around, checking every bit of my belly and sides around to my back. “Well your gallbladder looks really good, and so do your other organs, I’ll check your ovaries too for you.” I was so relieved that she could check everything, because at least this would rule out the cyst theory and put my mind at ease, even thought I really didn’t believe that it would be that. When we were done she said “everything looks really good, I’ve taken a lot of pictures and sent up to the doctor, the only thing I have flagged is that your spleen measures 13 cm. This is fine though, as it is within the normal size, if it was larger it would be of more concern. Some people just have bigger spleens but sometimes the spleen is enlarged because of inflammation in your body. I’ll send all of this off, and it should be back with the doctor by the time you’re back on the ward.” What a relief ey, and she was so sweet too. I am happy I had the scan done, however part of me wishes I had the scan when I was having my pain attacks, I wonder if anything would have shown up then, but the other half of me is happy I didn’t as she had to press down a fair bit and I don’t know how well that combination of pain and pressure would have been.
It is now 12.30, again, I’d not eaten since having something very small at around 6pm the night before. The combination of exhaustion, the aftermath of the trauma from the pain and the lack of food was leaving me very very tired, weak and feeling vulnerable. Anyone who knows me know that I need feeding every two to three hours preferably haha. Now I was back in the room, with the woman who had company and kept getting visits from loads of other nurses from the neighbouring ward. There was more staff in the waiting room then there were patients at one point, and I was feeling overwhelmed. Luckily I only had to wait roughly half an hour before the lovely nurse called my name again.
As soon as I entered the room to see the doctor I could tell the atmosphere was different. It was still the doctor, the person at the computer and the nurse in with me. The doctor was a lot calmer in his persona and actually felt like he had the energy to talk to me now.
“Your bloods look good, and the scan was good to. I’ll give you tablets to take for a week and if it get’s worse or happens again, then call your GP and arrange an endoscopy”. Now I think he might have mentioned something that started with “gastro…” somewhere in there too, but with my tired head I really cannot remember what he might have said and therefore don’t dare quote anything. This is where having someone physically with me to be able to be my ears and memory really would have been an enormous help. I asked about my spleen, if that was anything to worry about as I know I have had some inflammation in my rectum stump, but he said it wasn’t anything to be concerned about. That was it.. I was done there with him, and with the hospital.. for this time.. no real evaluation, no real answers, no talk about follow up. Just free to go home, take 2 of the prescribed tablets a day for a week and avoid spicy and grease food, and to book in an endoscopy if it carried on… That was all.
When I got home I had a look at the medicine he had prescribed me and saw that it was the same thing I had been given the day before from the A&E. I was given Omeprazole, which is an antacid used for various illnesses that include acid reflux, but also hiatus hernias. No I am not saying this is what I have, but this pain was worse than just an acid reflux, and after talking it all over with my sister, it sounds a lot like the pain attack she gets. I hope this was just a one off for me, that I’ve had too much stress and that triggered a reaction, but I can’t know, and probably won’t know, unless I do have an endoscopy, which frightens the life out of me, and if they find anything that can give an answer.
I am concerned about the lack of communication between doctors and how easily they prescribe antacids. I mean, I am sat here with one prescription that I was told to take one a day of, to then the following day get a second one (of the same thing) to take two a day. Luckily I am a cautions person and I do check what I am given, and how to take them and what to do, but had I stayed in my overly tired bubble, then I would have thought I was to take 3 tablets for a week and then one until the box was over… and I know full well that would have caused me one hell of a lot of trouble in my belly. But seriously, why are the prescriptions not logged? Why is there no communication regarding what I was given the night before and then the next day. Are they really happy just sending a patient off without any actual answers?
I can’t wait to be off these antacids, as they have caused my stoma output to be water thin and I’m worried about getting dehydrated because of it. Damn, there really is so much to think about even with the smallest of things.
I just have to throw this in here. I wish I knew the name of the nurse on this ward on Wednesday, she was lovely, and even though I specially thanked her for how warm, kind and lovely she was, I would like to send an official compliment so her boss knows how amazing she is too, and what a fantastic caring person she is, a real asset to have on the ward, and a real natural carer.
I’m now sat here, on Monday 26th, not far off a week later and I’m able to type about all of this and tell you my story. This week my stomach has been so sore and achy, a bit like a muscle ache I guess, this humming soreness. I am eating very very very carefully, the kindest of foods, and small portions, I am doing everything I can to give my stomach the best atmosphere to recover in. I am still absolutely exhausted and resting a lot, but I’m trying to do some bits, and the last few days I have been following my Mormors advice and painting on a face, so whenever I catch a view of myself in the mirror, I see someone who looks a bit more awake and alive. I know I’ve shared this before, but through all of her fight with cancer, she painted on her beautiful red lips, every single day, and I’m trying to channel some of her strength.
As some of you know I have been struggling enormously the last two months. My energy has been below low, I have been lethargic on a different level, needing to have a rest after simple tasks like having a shower, and I found myself just staring out of the window and suddenly realising several hours had past. I have been trying to get some help from the GP’s and been failing, and was slowly, with the smallest of small baby steps, managing to attempt to get on with day to day life.. and then this happened. Just remember, don’t judge a book by its cover, just because I have some makeup on, I’m wearing clothes that aren’t PJs and I’ve managed to do something, doesn’t mean that all is well, it just means I’m trying to take control and live my life a little.
I feel like this little last bit should really be a completely separate post but I’m going to add it here because it’s a sad yet a happy note.
I had to go to my GP today for blood tests and to leave a stool sample. This was to do with the fatigue before this attack last week, and it was booked in for Tuesday funnily enough, and instead I went to A&E with something else haha anyway, I got it rescheduled for today. I went in a bit worried, as my hand still aches and is bruised, and my good arm/vein is still bruised from last weeks blood tests, but I just hoped we could go with the other arm. Now here is the sad part because really I shouldn’t be making a big deal out of this, it should always be like this, but unfortunately, as you’ve just been reading… it isn’t.
The nurse I saw today was amazing. Just to start with she was friendly and welcoming. She went through what we were going to be testig and had clearly read my file as she knew my healthy history, knew I had a stoma, ulcerative colitis and how it’s been a bit of a whirlwind. I really appreciated her kindness, and she really treated me like I was valued, listened to and important. She did her best to have me comfortable when taking my bloods, and you know what, I didn’t even feel the needle go in. After it was all done I asked if she could see anything on my record from my trip to A&E and I found out that she couldn’t. What a strange system, things are only shared if they decide to send a letter… so does this mean nothing from this latest hospital trip is on my file/record? Should everything not be gathered as one? Anyway, I was in shock but that wasn’t what I was going to talk about haha. She even sent a letter to the doctors at the GP to look into my case (pre last weeks pain attack) and she went through my bloods, talking about the different things and what levels they should be at, and what they were. I felt like she had all the time in the world for me, and that she really did care. I left with a smile on my face, which is rare, and a sense of value. I thank this nurse, and can only hope that in the future I meet more like her.
Anyway, enough of my rambles. I’m so very tired now, I’ve spent all day reliving last Wednesdays experience while typing to you, and however difficult it may be for me at the time, to go through it, it is a form of therapy for me, a way of dealing with things, reflect on them and just get my head around it all again.
I hope this all makes some form of sense, my head feels totally frazzled, I don’t normally sit and write everything in one day haha.
I’m now gonna get myself wrapped up with a blanket, have a bowl of soup and just relax for the rest of the evening.
I’ll try to write again soon!
Thank you for taking the time to read too by the way ❤
Here are some photos for you too. The beautiful view I spoke of, a tired me, my well informed nurse and the sample form for today…oh such joys.
Just a gentle and kind reminder not to judge a book by its cover.
I may be able to go for small walks, or do the odd thing here and there.
I may have managed to get dressed in something other than pj’s or comfy clothes.
I may have been able to paint on a face, and find a smile.
But under it all my body/stomach is sore, I’ve got an exhaustion beyond messure, and a constant feeling of worry. Each step of the day, is followed by a rest.
I shower, then rest, I do my makeup, then rest. Sometimes the rest is a lot longer, sometimes it’s less.
The week started very dramatically but it’s all uphill, I hope. Read my blog tomorrow to find out more, but the important thing is, I am OK.
And here I am today, sat in the sun on the sofa with a warm drink, tying away…