Update on me + how is everyone else doing?

Finally saw my GI for the first time in over a year. And the only reason I saw him today is because I lucked out with a last minute cancellation, otherwise it would probably have been a few more months before I saw him. And thank god I did, because my useless IBD nurse hadn't done what she said she would do before Christmas and apply for funding for Stelara. I've been patiently waiting all this time, only to find out a few days ago she hadn't done a darn thing. No acknowledgement of that either, just a pissy-sounding reply to my polite email asking what was happening with the Stelara.

Anyway, I got the results of my MRI scan (done in December) at long last. The inflammation is mild but there appears to be a stricture at the anastomosis. Unfortunately my GI only got the results back 2 days ago so he didn't appear to know a lot about it and I was too braindead to ask him much. He said if it was shorter than 5cm he could do a balloon dilation to stretch it; anything longer would require surgery. He prescribed me Questran for the bile diarrhoea but warned it could make the pain worse, as Questran bulks up the stool - which I didn't know about. I will deffo try the Questran though, because I'm tired of the butt burn and itching from hell, as well as the urgency.

There isn't much pain though, as long as I'm reasonably careful with my diet. Although in the last few weeks I've had two extremely painful episodes in the middle of the night - like proper 9/10 pain and gruesome nausea (although no vomiting). It's the first time in a few years I've had abdominal pain that bad, so I wonder if that was related to the stricture.

Meanwhile, my GI is gonna apply for Stelara for me. I did ask him if he was sure, because... I dunno. I just feel horribly guilty for being such a burden on the NHS, even though there aren't words with which to express how much I do not want any of this: the Crohn's and, above all, the recurrent uveitis (which hopefully a systemic biologic like Stelara will tackle). Interestingly enough, my GI told me that vedolizumab (Entyvio) has been found to have a positive effect on the joints and eyes, despite it supposedly only acting locally on gut cells. Well I don't have joint pain but sadly it's made no difference to my eyes.

Anyway, my GI said he was sure. I honestly would have been happy to try any systemic biologic, possible antibiodies aside (I've tried Remicade and Humira already, but that was long before the uveitis started.)

I also asked about my GI about Brexit - I ask every medical professional I come across now about Brexit. A momentary expression of pain and frustration passed across his face (I think - it was very quick). But he said there shouldn't be a problem with getting medication afterwards - he said if a particular medication was produced in Europe, they would find alternative distributors. Now normally I would defer to his expertise but absolutely nothing will convince me a no deal Brexit will be safe until it actually happens and it is safe. Various reasons.

I could go on on an endless rant but I'm tired and I'm sure you don't want to hear it any more than I want to depress myself by talking about it.

Anyway I probably wouldn't be as scared as I am if it wasn't for my eyes. I've developed cataracts in both eyes and cloudy vision in the right eye. The cloudiness used to be an occasional thing which came and went, but in the last few weeks it's become permanent. In dim light I don't really notice it but in daylight - especially sunlight - it's horribly, annoyingly obvious. I saw the opthalmologist at my local hospital this week. I see him far more than I do my GI nowadays, and fortunately I like him. He booked me in for cataract surgery on the right eye in 3-4 months' time, to be followed by surgery on the left eye a couple of weeks later.

That's about it, I think. In a rare bit of good news, I came into an unexpected windfall a few weeks ago. Absolutely astonishingly, somebody from the DWP (Department of Work and Pensions) phoned me up and said they owed me some money. I was so taken aback by this, I just gawped and didn't say a lot. The backpay, which dated back to 2015, amounted to 12k pounds! That's more money I've had at once in my entire life. It's a nice cushion to have, especially at this uncertain time. Haven't gone and bought anything yet though, not even the laptop I was planning on getting. (I'm still using an ancient Toshiba which was budget when I was given it in 2012.) That isn't like me really and I can only put it down to an all pervasive depression and anxiety.

(It's my eyes. So terrified of the long term future of my vision. It will probably be okay but I have these bouts of sheer terror, particularly at bedtime. It's as fun as it sounds. That said, I do feel a bit better knowing that cataract surgery is booked and I won't have to live with the borked vision forever.)

Sorry to end on a somewhat sad and depressing note. Despite everything, I'm still in a better frame of mind than last summer, where every waking moment was pure hell to endure. It's just been a grim, sad, horrible year and a bit, but hopefully it is over now.

*pauses*

So er anyway gaiz. I haven't heard from most of you in a very long time. I'd like to hear from you and how you are doing, Crohn's-wise, life-wise, etc.

>_>

You've sure had your share of ups and downs. So, so frustrating that the nurse didn't take care of setting you up with Stelara. It's one thing to deal with poor service at a coffee shop, but quite another when it relates to your health care.

As far as your cataract surgery. Since it's done so often now, it's pretty much routine. My Mother had both her eyes done some years ago, and you would think she had gone from being totally blind to being able to see. Incredible really.

Congratulations on your windfall. Maybe you should tell your GI nurse about it? I'm sure that would cheer her up. Keep us posted, hope you keep improving.

Thanks folks.

I wish I had tried Questran sooner! I did have some abdominal pain and nausea yesterday, but that might have been down to the dinner I had. But it's done an amazing job of dramatically reducing the butt burn/itching from hell and the urgency and number of toilet trips. However, with the stricture I will have to be careful and I think I will try to get by with one sachet a day, instead of two. At least until I'm more used to it and can gauge how it affects me.

@IaC - I'm waiting until I've had my cataract surgery before travelling - at the moment I wouldn't be able to fully enjoy it with the cloudy vision. I'm also going to apply for Irish citzenship so I can keep my Freedom of Movement after Brexit. Not only does FoM make travelling across Europe far easier, I can have reciprocal healthcare in 27 countries. If I was younger and healthier, I'd even look into living in another country. But with my poor health and depression and no skills or expertise to offer, it would be very hard to emigrate now.

@73monte - Lol, I think it would annoy my IBD nurse if anything - she has never seemed to like me very much. She acts as though I'm a nuisance when I've gone literally years without seeing/speaking to her.

Good job about your mother. My parents have both had cataract sugeries recently - my mum's one was only a few weeks ago. It worked well for them.

@lamb61 - I'm sorry, it sounds like things are quite bad for you right now. I hope that things take a turn for the better soon, whether it's getting the Crohn's into remission or finding a job (or, preferably, both).

The Questran is still working great. Gonna brave my GP surgery's absolutely nightmare booking system to try and make an appointment with my GP so I can get it on repeat prescription.

@Scifigal - Good to hear from you. Sounds like you've been insanely busy, which is good - in a way. It's been the opposite for me: life is very quiet. I've been pretty down due to the endless eye issues, although I'm hoping cataract surgery will improve my vision. I also need new reading glasses, but I can't get those until I've had the surgery done.

I love raspberries but they would probably slay me at the moment.

Do you have the link to your new blog? I've thought about starting one but it would be really boring >_>.

Hi NCOT!
I've been taking a break from the forum but I noticed your post and wanted to say Hi! I was watching Jon Oliver last night and the focus of the show was on the impact of Brexit. It sounds terrifying. I think getting the Irish citizenship if you can is good insurance for you. I don't know how both our countries got so messed up but it is very sad.

I've been ok. I continue to struggle with daily IBS and I think that's just the state of my life. I did have a recent work-up with a colonoscopy and CT scan. My GI said my surgery site was a little inflamed and slightly twisted, but all the biopsies came out normal so no active Crohn's. Sometimes it feels like a stricture, which is why I had all the tests, but my guess is that it's just anatomical or scar tissue, in other words, there's nothing to be done about it! I haven't been on any medications since my surgery in 2014, so I was glad that there is no active disease....trying to drag that out as long as possible!

I've been trying to shift my focus away from illness despite the daily symptoms, which is why I've been avoiding the forum for awhile. Other then that life is ok with me. Just working and plugging along.

I think about you, and I'm glad at least you have some money for a cushion. That's got to be a relief. I hope you can get all the medications you need now and after Brexit!

I'm so glad to hear the Questran is doing well for you! Hopefully you'll get started on the new bio soon and that it will work for you.

My new blog is called SavingTalents.com. It's not got a ton up yet, but I'm hoping to focus more on it once I can sell the first one that I've had.

I think you would be wonderful at blogging!! Not only is it therapeutic, you have a huge wealth of knowledge that people could draw from.

Thanks, I really appreciate that! Lol, I have to stay organized. If I don't get my list done, it's okay. But if I don't even make a list, then I slip into just laying in bed and having my kids watch TV. They deserve so much better than that.

I'm feeling a little depressed today. I spend the night in the ER. Last week on Sunday my stomach started acting up. The kids had a mild stomach bug, and I'm just not fighting it off very well. Unfortunately, my poor husband started having symptoms of it yesterday.

I'm glad you have the Valium for times when anxiety is overwhelming. It's okay to have big emotions and let them out, but there's a fine line between big emotions and a panic attack. I have a few pills on hand that I only use like once every few months. It's usually if my stomach is acting up at the same time as hormones, meaning I'm overly emotional AND I'm not absorbing my antidepressant well.

What new laptop are you going to get?

Wow, nice machine. Are you getting the latest i7 processor inside?
I guess you don't want touchscreen, which is more for tablets and desktops...

Have fun.

Thanks ambling :p I'd prefer an i7 processor because the better the processor, the more powerful it is, but also the more futureproof. I could get a gaming laptop with better specs for a similar price, but then there are compromises in battery life, weight, etc. And I'm never gonna be a l33t pro gamer running the latest games at a trillion fps - if I ever get around to playing Undertale I'll be doing well.

Hopefully it will play Geometry Dash though - yes, after all this time, after all these years, I'm still playing that game <_<.

I'm not sure about the touchscreen. I don't miss having it on my laptop, but whenever I've used my mum's friend's laptop I've found myself using the touchscreen on that quite a bit. So if I had it I would probably use it, but it's not essential.

Cheers. I hope you are keeping okay.

Edit: Oops. I got distracted by looking at laptops for so long, there's been another reply in the meantime. Give me a few minutes to read and respond, scifigal.

Sorry you had another bad night

Pretty sure I don't have bipolar disorder. Perhaps the closest I come is agitated depression. I do get the restlessness and the irritability, but that's about it - I never get manic or suffer from "highs". At any rate, I'm already taking an antipsychotic - quetiapine (brand name Seroquel). Been taking it since last summer, but it's not had any positive impact on my mood - I went through the worst depression on my life while I was on it. I stay on it because it helps me fall asleep, no other reason. Although I suspect it's causing blurry vision (not the same thing as the cloudiness), and I would like to try a few days without it to see if the blurriness goes away. But I'm not looking forward to the insomnia when I do.

I haven't found a single medication which helps to improve my mood. I'm not sure why. I did have one psychiatrist tell me that medication wouldn't work for me because of my autism; my dperession came from a different source than somebody without autism. It was a few years ago and he's retired in the meantime, which is a shame, as I would have liked to seen him again. I would have liked to have asked him more about depression and autism. The psychiatrist who has replaced him is useless. He knows nothing except drugs and not that much about those, I suspect.

Post Edited (NiceCupOfTea) : 2/26/2019 10:14:06 AM (GMT-7)

Mental health is different to physical health over here. It's generally given less priority and less funding. And yeah, because it is so hard to see a psychiatrist or psychologist, I don't really get given a choice about which one I see. And even if I were willing to travel further afield (hint: I am), I don't have that option either as mental health services invariably won't take on new patients outside their catchment area.

Physical health though, of course I can change my doctor. And indeed I've done so a few times. But it's not like there aren't limitations in the US healthcare system. I'm sure the quality of healthcare insurance varies wildly, but I've certainly heard of many cases of people being unable to see the doctor they want to or obtain the treatment that they need because their insurance company has basically denied them.

Speaking of which, a couple of years ago I was sent to a cardiologist because I fainted a couple of times, a few months apart, right when finishing up some light weighlifting at the gym (not working out nearly as hard as what I see others doing).

The cardiologist wanted me to wear a heart monitor for a month. Insurance rejected it, and the letter from the insurance company doctor said it was rejected because it wasn't an approved treatment that showed it improved short or long term health. Uhm, what? Treatment? It's a test, for goodness sake, not a treatment. Any treatment would come afterwards, depending on results of tests. They obviously paid no attention at all to what they were responding to. They did later agree to cover one week of a hear monitor (and it didn't find any abnormalities).