Having surgery

It is :-/

Oh well, nothing is going to happen over the weekend, so I may as well forget about it until Monday at least.

You are $%@ing kidding me. My GP surgery forwarded the results to the wrong hospital. *bangs head on desk*

I was wrong about my IBD nurse not replying at least. They responded on Friday, but I didn't get a notification so didn't spot it until today. They didn't know anything about it, but suggested I try Cardiology or my GP surgery. Must admit, the thought of contacting Cardiology hadn't crossed my mind but it's kind of obvious when you think about it. Called them up. No record of me on the system. Okay.... annoying. But not the woman's fault. Tried my GP surgery next, figuring they could tell me who they sent the results to. Unfortunately they could. Instead of sending it to the hospital who, you know, requested the sodding test, they sent it to the local hospital instead. Why??

I *knew* it was a mistake getting my GP surgery involved. I only did it because it's far closer to me than my hospital and at the time we were going through a petrol crisis. It's been resolved now, but it could have gone on for months for all I knew. Anyway, I wasn't sure I would have petrol to get to the hospital, but in future I don't care - I'll dry ski there if I have to.

On top of that, I still have another wait because my GP surgery took TWO WEEKS to send it to them - apparently the referral wasn't sent until Friday, two week after the ECG! Absolutely fuming. I'll phone the local hospital tomorrow. Oh yeah, and I still don't know what the flip is happening about surgery. Think I'll phone the pre-operative assessment healthline tomorrow, i.e. the people who did my original health checkup, and see if they can tell me anything.

@Clo - I've had brief chest pains here and there, but only lasting a few minutes - nothing like that dreadful night a few weeks ago. I felt a bit breathless when I was on the phone just now, funnily enough. No, it wasn't rage, as that was before I spoke to my GP surgery, not afterwards >_>. Might have been anxiety but it didn't feel like that either. It just felt like I was slightly short of breath, but not really gasping for air.

I'm on levothyroxine, 6MP, agomelatine (an atypical antidepressant), that's about it. Stelara was stopped through my own fault, but I didn't feel like it was making much, if any, difference anyway.

Anyway, thank you - same back to you :p

Another, hopefully shorter, update. Pretty depressed right now, truth be told.

Got a letter today from the cardiology department of the hospital I've been referred to. Wasn't expecting to hear from them this quickly, to be fair. They don't actually have a date for me yet, but did say if I've not heard anything by the 19th November to get in touch, so hopefully it won't be a long wait.

A discusson with somebody on Reddit led me to think I have angina. The symptoms certainly match up. Obviously I will need to be diagnosed first, but I am just so depressed at the thought of having a serious heart condition in my 40s. Weird thing is, my blood pressure is always perfect so I wasn't really worried about my cardiovascular health, despite the chest pain. Hell, a few months ago my older brother was envious of my blood pressure results! (We were both using my dad's blood pressure machine.) His results were sky high, while mine were in the ideal range. He did get checked out by the way - think he's on medication for high blood pressure now.

I did phone the pre-op assessment healthline, but the woman couldn't tell me anything. All she could say was there wasn't a date for surgery, which really doesn't tell me anything. She said the system didn't tell her any more than that, and I believed her. Just going to have to assume that the surgery is on hold until the heart stuff is sorted, but you never quite know with the NHS - often the right hand doesn't have a clue what the left hand is doing.

I'm also depressed as hell about my Crohn's. Everything I eat causes so much pain and discomfort - it's not agonising but it goes on for hours and is seriously uncomfortable. And it's got worse recently - I'm starting to lose my appetite and eat less, which is not normal for me. I'm also worried about my crap diet and wonder if that's what led to the heart problems in the first place. I barely eat fruit or vegetables anymore. I just eat rubbish because I'm too lazy and tired to prepare fresh food and it's unpredictable what effect it'll have on me. An apple or a small side salad will usually be okay, but sometimes I've stretched out the healthier or more varied eating to two or three days and then ended up going through a night of hell.

I don't know if I have a stricture, adhesions, or what. I remember having an MRI scan done where there was apparently moderate dilation of the bowel behind the anastomosis - you see this sort of dilation in strictures, as the bowel behind a stricture stretches to accommodate more food 'cos there is a bottleneck there. However, the follow up sigmoidoscopy failed to find any stricture. That was a couple of years ago, so things might have changed since then.

Also worried about my teeth. Most of them bleed when I use interdental brushes and I cannot get it to stop - god only knows I have tried. Long story short, my NHS dentist fobbed me off for several years even though I was worried about gum recession. Eventually went to a private dentist who told me I had advanced periodontal disease. That's the only time in my entire life I regret not making an official complaint about somebody because by the time I saw the private dentist, the state of rot was too advanced for him to treat. He and the hygienist have done their best, but my teeth have just got worse and worse since then, despite brushing 2x a day, etc. I'm worried that the bleeding teeth might be causing heart issues too (there is a strong link between poor oral health and systemic inflammation - the mouth acts as a gateway into the body for all sorts of bacteria).

I cannot take much more of this physical falling apart. Sorry to be so depressing and maybe tomorrow I'll feel a bit better (lack of sleep isn't helping), but right now I just can't. I'm only 46 and I feel like 96. It's ridiculous. Crohn's has wrecked my body. Horrible disease.

Post Edited (NiceCupOfTea) : 11/9/2021 9:24:07 AM (GMT-7)

Hi NCOT. Sorry to hear of your struggles, Crohn’s is indeed a wretched disease and I share the actually in 40s but feel decades older feeling. Just wondering if you have a blender. When I have been struggling with appetite and possible structure smoothies and soups have been a good way of getting healthy calories in with minimal risk. Maybe something for your Santa list? Easy to get calories up - avocado, almond butter, coconut milk, even a blob of coconut oil. Plus spinach/ banana/ frozen berries or chopped fruit, preferred milk, natural yoghurt, honey, cocoa powder, ginger in some combination. I sometimes add probiotics or l-glutamine powder. Soups are best with homemade broth but my other half hates the smell so generally a stick cube, whatever veg, spices and some fat (nut butter, coconut milk, creme fraiche). Don’t get me wrong none of this comes close to a bacon sandwich. But I am thinking with op on the cards you will want to maintain weight and be in as good a condition as possible.

Sainsbury’s online do all the above even chopped frozen avocado for can’t be arsed days.

Something else that I have found helpful is turmeric latte - you can either pay a fortune for an artistic preblended spice mix or bung half a teaspoon of turmeric, ginger and cinnamon in milk (I use almond milk) with a blob of honey and heat. A smidge of black pepper helps your body benefit from the turmeric apparently. Take at bedtime and any iron supplement earlier in the day (turmeric inhibits iron absorption).
Hope some of this inspires. It is so easy to eat less and less when feeling rubbish and Crohn’s flaring but it just leads to vicious downhill cycle.
Good luck

NCOT,

Jeez... I am sorta speechless. Well I'm not really but what I have to say is not good...and it would probably just stress you to hear it...aaafggh. I want to say something so badly!!!!

Please be proactive. Make those calls and ensure that your health is being taken care of. But try to not raise your anxiety, stress levels or blood pressure.

On the food side... A blender is a wonderful idea. I made stews and then just blended them up until they were smooth. It wasn't ideal but it was easier on my body. Right now you need to make sure that you are eating something to keep your health/strength up. You can freeze your blended meals to slurp on later. I just put mine in little baggies and took them out as needed. Can you eat eggs, applesauce, oatmeal..those kinds of things? I completely understand about not being able to eat healthy foods all the time. Veges really give me a hard time... But all the noodles and potatoes have caused me to gain so much weight. It's a difficult situation to be sure.

You are in my thoughts and prayers my friend. Please keep us posted.

Clo

P. S. I completely understand the feeling that your body is decades older than what it is. I hate Crohn's. It's a wicked awful disease. Try not to dwell too too much on Dr. Google--that'll scare the living sh1@ outta you.
(((HUGS)))

Post Edited (clo2014) : 11/9/2021 9:58:03 PM (GMT-7)

So sorry you are dealing with all of this! I hope it gets sorted out soon. Several years ago my gums would bleed every time I brushed them and I was told I had periodontal disease and needed surgery. I got a waterpik instead and my gums no longer bleed and no one has mentioned surgery for years. I don't know what they would be called in the UK, but if you can get your hands on one it could make a world of difference for you.

Here's a video of what I am talking about
https://youtu.be/tmbcef2jfks

BTW - years ago I had the beginnings of severe periodontal disease and receding, bleeding gums that I finally put the brakes on just by flossing each night. It seemed a hassle at first but quickly became a habit and kept my gums healthy for many years. Lately I have gotten lazy about it and have developed several severely sensitive teeth. Started flossing again and they are much better already. It’s crazy to me that flossing every day can make such a difference but it really can.

NCOT,

How are you? Have they scheduled your surgery or has Covid managed to delay it? I have been thinking of you often and hoping you are just too busy to get on here.

Over on our side of the pond...Omicron is going crazy. It seems like more and more people that I know and am friends with have caught it. Some...or many...of our hospitals in Texas have really slowed down on non-essential surgeries. My friend was supposed to get her knees done but they put her off 3 times and then finally just cancelled it. They told her to try back after March. I guess not being able to walk is nonessential. Sarcasm there...sorry. I am unsure where ostomy surgery would fall in there.

We are not "locked down," in Texas. There are many that don't even wear a mask...and others that refuse the vaccines .. so for me that's sorta scarey. Who am I kidding??? It totally freaks me out. I hide in the house and try to avoid everyone. Even my doctor's know that we have to do virtual appointments. The last time my GI made me come in (he threatened to withhold my Remicade if he didn't see me in person) my blood pressure and heart rate were sky high, I was sweating like a pig and hyperventilating so much I almost passed out. Panic attack... I hadn't had one before so it came as a surprise. I'm just glad I was in the doctor's office at the hospital. I thought I was having a stroke. He asked if I needed to see anyone for that...which I found sorta insulting and yet funnily ironic. Covid is running rampant, I have an immune based disease, I am immune compromised, I have asthma, chronic kidney disease, am a chunky monkey, take immune modulators, I have zero antibodies to the vaccines and you think I shouldn't be afraid??? I don't think he liked my sarcasm. Lol...

Hopefully you check in and let us all know how you are doing.

Clo