I'll be starting Entyvio... eventually

I saw my GI today. Beginning to think I need antidepressants just for my hospital trips alone, I find them so depressing now. It wasn't even that the visit went particularly badly. In fact it went quite well, all things considering. But at heart I am sick and tired of having this disease and there is nothing that anyone can do about it. I don't think people realise how crap it makes you feel. My GI kept on saying how much more limited my inflammation was now, and I get his point. But I'm still scared of eating, I'm still getting up half the night to go to the toilet, I still have abdominal pain and I still feel like crap for hours after eating, especially in the evenings. The only way that I know I'm not quite as systemically ill as before my first surgery is that I don't have the fevers of death anymore.

So, irrationally perhaps, I felt a little fobbed off on that front. I always feel like it's at least partly my fault though, because I never explain my symptoms well enough or I miss a few things out. Was burdened with that feeling after today's appointment. Suspect one or two people might suggest at this point I email or phone my GI, but I can't. I have neither his email address or his phone number. Will probably be another 4-6 months before I see him again.

That said, I didn't have to persuade my GI to try Entyvio at all. In fact he was the first one to bring it up. Nor did he give me the dread sentence about giving 6MP "more time to work" that I was half-expecting. I told him my theory about the Remicade not working for me 'cos my disease was just too severe by that point. His reply to that was quite interesting. Said that he didn't used to believe that, but that the data has since shown that in very severe inflammation, the Remicade brings it down but isn't sufficient to bring it under control. In some cases, triple or even quadruple doses are required. He said in America some doctors will give that much Remicade, but in the UK it's not possible for political and funding reasons.

Talking about Remicade also opened up a pathway for telling him how useless my previous (but much more local) hospital was. Apparently some of his patients have come from my former hospital, which I'm not suprised about. But one lady who wasn't happy with my GI chose to go to my previous hospital. I wanted to know more about her case and why she was unhappy, but bottled out of asking. Good luck to her: she'll need it.

My GI said my CRP was as low as it's ever been, but the massive spike a year ago happened straight after my operation. I did point that out to him, but not sure he took it on board. The thing is, I don't want doctors thinking my blood test results are 'good' on the basis of past results that have nothing to do with Crohn's. Thank god for the faecal calprotectin test, as that's been consistently high since surgery and my GI believes in it. In fact he's ordered another one, along with a set of blood tests. Getting the TPMT test too, so if there's scope to go higher, I'll increase my 6MP dose. I just want to knock the Crohn's on the head, I don't care how much I have to suppress my immune system to do it.

Anyway, the first step to getting the ball rolling on Entyvio has been taken. It will take months for the application/funding to go through and be approved, which is why I wanted to start it ASAP.

When I got home, the moment I parked and switched off the ignition, I burst into tears. Didn't even have time to make it into my flat first. Just the reality of having a sh!tty chronic disease for the rest of my life in a country I now feel even more of a foreigner in overcoming me, I suppose. Total despair and then boiling rage. Eventually I heard a knock on the car window. It was a concerned old lady asking me if I was all right. I hastily said I was okay, just a bit upset. Turned out she was my neighbour and she was called Barbara. I felt a bit foolish, but also a bit better.

In my flat now and bone-tired after writing this. Bone-tired at the thought of everything, really.

Thanks Dikid.

Sorry if I didn't make it clearer about the Remicade. It was something that I was on a few years ago, not now. I was on it for a whole year and it didn't work. It apparently brought my inflammatory markers down after the first dose, but as I was in hospital a month later with the worst flare-up of my disease yet and an absolutely sky-high CRP, I wasn't too impressed by that.

The frequency was even increased for a while (every 4 weeks instead of every 8 weeks), but that didn't help either. Dunno the dosage, but it was probably the standard 5mg/kg.

It does stink, but it's no different to healthcare providers in the US. Someone who you'll never meet is making a decision on what meds you can have on cost grounds in an office somewhere.

I would go back to an ileostomy tomorrow if I thought that would get rid of the Crohn's for good and if I had any faith in the long-term survival of the NHS. Because if the NHS goes, I am left up sh!t creek without a paddle. I am frightened.

Hi Miranda,

I hope that somehow you can dwell on the positives, which I know might not seem easy to do.

I'm glad you're going to Entivio. The only negative to that is that (I've heard) it can take several months to start working.

I'm curious to know two things. Why can't you get in touch with your GI? No phone or email?

Also, how do you feel the Brexit situation is going to affect things particularly for you.

Tom.

Gosh, a double dose of remicade nearly killed me, imagine if i had a triple or quadruple? Some people do much better on it, but for me, it did nothing positive. It sounds like you're doing a little better so far as your GI symptoms, it sounds like your mental state is really bad at the moment. Maybe you should try an antidepressant or see a therapist. It's really difficult having a chronic illness. You should try to find someone you can speak to in person, who you feel comfortable with, and open up about all these bottled up feelings. It's bad having the issue, but it's not helping to keep it bottled up. Maybe it would help you to see the positive side once in a while. I know it's hard to do, I am very negative too... hysterical that Barbara saw you. I hate when stuff like that happens to me. At least she was compassionate. Look at that, there are some nice people out there. :)

Sorry, i just saw your later post about being in pain. Is this with GI symptoms? How did you get out to the hospital safely with the GI stuff going on? I would always have panic about leaving my house when I was flaring. Did you have your scope and he gave the assessment of things looking "more limited" from those visuals?

Morning folks. Totally braindead from lack of sleep due to anxiety and got to drag myself into hospital again today to get the blood/stool tests done. I don't have to get them done today but if I don't, I may not have any time to do them next week. I'm also up now, so I may as well get them out of the way (couldn't do them yesterday 'cos it was too late).

@Tom - UK hospital consultants don't tend to give out their email addresses or phone numbers to their patients. It's almost impossible to speak to one unless you are actually in an appointment with them. And at some hospitals, you hardly (or even never) see the consultant. It was like that at my previous hospital. I was there for 3 years and I never once see the GI consultant, just junior doctors or registrars. Still got no idea what he looks like to this day.

The short answer to your Brexit question is "badly". The longer answer is "very very badly". I don't quite know. Suspect it in the longer term it will result in a recession, jobs being lost, welfare being slashed, services being cut, etc. - as though the tories weren't doing the last two already, they have a free reign to do it even more now. I also don't like that people are feeling free to be more openly xenophobic. It's just not a nice atmosphere. It wasn't a nice atmosphere before the referendum, but I think it's going to become an even worse one now. The worst sorts of people have been encouraged by Brexit, including far-right groups across Europe. But maybe I'm biased, because I absolutely loathe mindless patriotism. Okay, I'll shut up now.

@gumby - It's the waiting which is doing me in the most, I think, after the symptoms themselves of course. I'm so, so, so sick of the waiting. Not just for the tests, test results, and appointments, but also the long waiting times for meds to start working. It feels like you are in one eternal queue, which never really ends. You may shift queues occasionally, but you never stop queuing (waiting) for something or other. It's beyond wearing. Especially when you don't even have any great hope of reaching your end goal. Remission. Real remission, that is, not the hospital deciding you are in "remission" based on old blood tests of 6 months ago, disregarding 'mild' inflammation, etc. Actual, proper, symptom-free and inflammation-free remission.

Entocort would probably help, yeah. I didn't ask my GI about that (yet another thing I forgot to ask about). Thing is, I can't see much point to going on it for a month or two. To get sustained relief, I would obviously need to be on it for quite a few months and I just dunno if I want to run the risk of steroid-related side-effects or not, given if the Entyvio doesn't work I'm still up sh!t creek anyway.

I'll look out for Barbara, but my worry is I won't recognise her if I see her. I was too embarrassed to look at her directly, so I didn't really get a good look at her face =/ Not got that great a memory for faces either, so it takes me a little while to memorise what somebody looks like.

God knows what will happen with Brexit. I can't see it being good for the NHS, simply because making us poorer as a country must mean less money available for the NHS. That £350 million towards the NHS claim that the Leave campaign made before the referendum was a sick joke: the promise was retracted before the dust had had time to settle on the voting slips (or ink to dry in the case of the more paranoi... security-conscious Leave voters).

Trump will probably be sad that his blond twin, Boris Johnson, won't be joining him in a US-UK alliance now. Not much consolation to me though, as some other psychopath will simply take BJ's place.

@nssg - I can't afford therapy. HW is my therapist.

Well, I had nothing to eat, which always helps. My GI appointment was at 4pm and there was nearly an hour's delay so I didn't see him until 4:50pm. Not eating works better when you don't have such late appointments.

Yeah, the pain is completely GI-related. That's one of the things which almost completely disappeared with Entocort, so I have even less doubt that it's related to the Crohn's inflammation.

@scifigal - Yeah, we do have pain management clinics, but I probably wouldn't get a referral and it would also be a waste of time and resources. I don't have terribly complex or severe pain, but it often interferes with my getting to sleep because it tends to be at night that I get it. Codeine or tramadol would work, I'm not sure what else a pain management clinic could prescribe, short of even stronger opiates.

Thanks anyway, folks! Sorry for inflicting another super-long post on you *collapses* Need... tea...

Oh crap! Cholestyramine! Another thing I forgot ask about! #HeadBangingAgainstAWall.gif

Habs, I have tried lots of antidepressants already and none of them worked very well. At my sickest with the Crohn's I couldn't seem to tolerate the SSRIs at all - nausea, vomiting, diarrhoea. Later on, I could tolerate tricyclics and venlafaxine, but I had mixed results with those to put it politely. Then I did a full circle back to the SSRIs - citalopram this time. I tolerated it pretty well (starting at the lowest dose probably helped), but I was on it for months and it did nothing for my mood, good or bad.

Haven't been on anything for about a year, but do have a prescription for duolexetine (Cymbalta) waiting for me should I choose to go and pick it up.... It's been ready for about a month, but I didn't actually know that, 'cos nobody bothered to let me know until I saw my GP last week. No rush now, I'll get it on Monday after my car's service. Got about as much faith in antidepressants as I have in Crohn's meds though, unfortunately. (I'm not saying they don't work for some: they just don't work for me.)

Hi aimz.

I looked it up. There seem to be as many trusts as there are hospitals in the country! Anyway I must be under the Luton & Dunstable University Hospital NHS Foundation Trust, since the L&D is the hospital I go to for my Crohn's. I don't actually live in that area - I'm based in bucks. But it's been so much a better hospital for my Crohn's than Stoke Mandeville (name and shame).

Are you at the John Radcliffe hospital in Oxford?

From what I remember of going on Remicade, it was about a 3-4 month wait between my GI deciding to put me on it and me being given the first dose. However, I think the majority of that waiting time was taken up by getting the application for Remicade approved.

I have an IBD nurse that I can contact through the Patient Knows Best website. She's been generally very good at dealing with my occasional requests for test results, medication requests etc. But she's gone on a course now and I have no idea what her replacement will be like.

Sumatriptan, eh? *googles* Well on top of abdominal pain, I do get headaches and other aches and pains. (Paracetamol does actually work for the headaches if I catch them at the very early stage. If not, then it's ibuprofen.) However, I can't find anything on google about sumatriptan treating Crohn's/abdominal pain. Does it work for your abdominal pain, if you have any?

*sees time* It's getting so late I may have to leave these blood/stool tests until Monday now >_<. Besides which, I'm a bit paranoid if they hand in a blood sample at 5pm on a Friday afternoon, it won't get dealt with until Monday (not sure how long the anti-clotting factor they add lasts for).

Hope all goes Ok for you :)

Thanks. Same back to you :p

Hello! Yep, I'm at the John Radcliffe. I had a bit of an issue when I was first diagnosed with feeling like I was not being taken seriously, but decided I'd had enough and had a bit of an unload on the GI, then things got better!

Sumatriptan is great for my abdominal cramps and pains, which I get far too regularly, it's been a life saver and seemingly has no ill effect on my Crohn's. You can get 50mg tablets or 20mg nose sprays, which are foul but do work quickly - the tablets can make you feel a bit sick if taken on an empty stomach.. I don't think it's prescribed for Crohn's, that was just a lucky find!

Being able to contact the IBD team is a godsend, I hope your replacement nurse is as good as the other one - hopefully she'll be back soon.

I was 'lucky' in that I pushed in the queue for remicade by being admitted to hospital after a 9kg weight loss in 5 days.. It worked beautifully but seems to be losing the edge.

Let us know if/when you manage to get onto Entyvio - why is there such a wait for approval? In a case like yours I would have thought it was a natural succession..

I don't know if it would be equally hard to get for you, but I actually use Xanax for pain at night. It relaxes me enough to fall asleep. I have "health anxiety" written in my chart, which is a big joke, but if that's what it takes to prescribe me Xanax then that's fine with me. I take the lowest dose, .25 mg and sometimes I even break it in half. I don't take it every night so it remains effective. I also sometimes take TylenolPm, which is acetaminophen and Benadryl. That also does nothing for pain, but knocks me out so at least I sleep.

So I'm confuesed....are you seeing your GI again? Can you ask about the choestyramine and xanax? I still think taking Entocort for a few months might bring the inflammation down while you are waiting for the Entyvio to take effect.