Not seeing my GI for another 4 and a half months now

Hey NCOT....just wanted to say aww crud for you. And was wondering...can you see your general doc sooner? I am wondering if you are suffering from an infection and think you deserve tests sooner.

Anyway.....hoping you get answers sooner....

@Habs - I can see my GP much sooner, but he doesn't have anything to do with managing my Crohn's. He doesn't really know a lot about Crohn's and has admitted as much; this is something I'd far rather talk about with my GI. I don't think it's an infection though; well, I suppose it could be, but I think it's more likely to be Crohn's or adhesions :-/

@gumby - Thank you for your kind words! I can't do a lot today (have to go out quite soon and haven't even had lunch yet), but tomorrow I'm gonna try to get an earlier appointment.

If my GP can run a faecal calprotectin test, I might be prepared to wait until September to see my GI (if it's normal), but I don't think he can; I will ask him though. Anyway, I'm glad the obstruction seems to have finally resolved and you are slowly getting better. I suppose at least your GI is honest about not knowing whether it's scar tissue or inflammation; dunno if an MRI or CT scan would be better - that's something to ask the Chicago doctor. I had an MRI scan done, for whatever it's worth.

Okay I'd better be off. Thought I'd have time to reply to my emails, but that will have to wait until later on now - later guys :-/

Thing is, even if I saw my GI promptly, what's the point?

The current treatments for Crohn's are so piss-poor. Basically the thing to do is not get Crohn's in the first place, because once you get Crohn's it's a complete lottery after that.

It's a sick joke.

I look around and honestly whether wonder whether the treatment of Crohn's has really progressed in 50 years at all. Is there any evidence whatsoever that the rate and severity of flare-ups has decreased in 50 years? I haven't heard of anything. Surgery is doubtless safer than it was a few decades ago, but otherwise I don't see how we have any control over this barbaric disease at all, despite the pretense that the meds work. They don't; I mean not really work. Not what I call working.

We can barely treat this disease still. I bet if all the Crohn's meds were taken off the market tomorrow, it would make surprisingly little difference overall. I mean it seriously. I just don't see much, if any, evidence that the medicines help to alter the disease course at all; it seems to be genetically predetermined or whatever. I dunno what the hell it is, but whatever it is, meds don't seem to affect it very much. Most of the time Crohn's will wreak havoc on your insides sooner or later, but for a lucky few it remains mild for life - absolutely nothing to do with meds, diet or whatever. It's pure luck of the draw.

And, yes, I know I'm rambling. I don't care. I'm sick and I'm tired, and I'm depressed, and, above all, I'm just losing hope. Losing hope that there will ever be a truly effective treatment, let alone a cure. Although knowing my luck, if ever a cure is to be found it'll happen when I'm 99 years old and breathing my last on my deathbed.

Post Edited (NiceCupOfTea) : 5/7/2014 6:40:09 PM (GMT-6)

OK NCOT, you may be right about absolutely everything. The thing is....
A. You don't KNOW that the Crohn's is back....you are worrying about it at this point. You owe it to yourself to find out what is going on.

B. Maybe it's something that antibiotics or some such thing can clear up this time.

C. Don't think so hard, and get your butt (and ostomy bag) in there. I'm so sorry....I know better than to give you cheerful platitudes...that never works with you. Hang in there....I want you around!

Sorry guys. Was depressed last night... :-/

This was the first I had a genuine scare about Crohn's returning, but now my stomach has not been so bad for a couple of days I think I might have overreacted. I just don't know what to expect if the Crohn's does return; I don't know how it will manifest itself. First I reassure myself by telling myself I'm not having any fevers, for example, then my brain pipes up to remind me "well, you didn't have fevers for the first five years after diagnosis either." I also don't have a clue what my blood test results showed for the longest time, because I was too shy/ignorant to ask and doctors never told me. No idea what my CRP was for example. It might have been normal for years for all I know.

In short, I don't think a normal blood test result would be enough to reassure me. The faecal calprotectin test would reassure me more, since that specifically measures intestinal inflammation. In the past I always left the testing up to the doctors. I realise now I can't happily do that anymore. In the early years I was happy to wait 5 years for a follow-up colonoscopy after the one which diagnosed me. I can't imagine waiting 5 years now, but if I left it solely to my GI's discretion it might take that long.

I suppose I just feel guilty for wanting tests. It isn't just the Crohn's; I'm really worried about my thyroid and the (possible) psychological effects of the thryoid meds and/or the condition itself. I haven't had thyroid tests done for a few months, so now I want to have those done again. I worry constantly that my brain has been damaged: by meds, screwy hormones, frazzled neurotransmitters etc. I also worry about needing to take meds for Crohn's again: that they won't work or that they might make me even worse, like they appeared to do pre-surgery.

Yes, I'm a worrier :-/

@Don'ttrustthemeds - I think possibly your username scared people as well. To be fair, we've had a few people in the past join to warn us of the evils of meds only to leave and never post again. Although I felt for you, I did have you pegged down in that category at first. But, fair play, you've returned and you've answered people's points. I think you have every reason to be angry and at least somewhat bitter. It's all very well saying serious side-effects are rare: they probably are, but that doesn't make it any better for the people who get them.

But, like others said in your thread, we have to pick from the lesser of two evils. For most people it will be meds over Crohn's. Despite my scepticism, some meds do get some people into remission, at least for a while. I was on Remicade for a year. If it had worked (it didn't even begin to work), I'd have stayed on it indefinitely. At least I got no permanent diseases from any of the meds I took, so in that sense I was lucky. Re there being no drugs specifically for Crohn's; they dunno what causes it, that's why. They don't have a clue, really, other than figuring out it's some insanely complex interaction between genes, the immune system, the gut flora and the environment. All they can do is modify one or two aspects - usually the immune system - and that's it. (Diet is more likely to modify the gut flora.)

We're a long way from any highly effective treatments which work for everyone, let alone a cure, imo.

@Gumby - True to A, B and C! Argh, I will wait two weeks to see what my GP says.

@starreyeyedgyrl - I couldn't agree more with not being able to tell whether I'm denial or paranoid. I feel like this disease has turned me into a raging hypochondriac. I used to be so bláse about my health: in some ways ignorance is bliss, to be honest.

Anyway, thank you very much folks. And now it's time to wrap up this post: I'm having a competition with myself to see how long I can make my posts :p

Edit: Woah, that was long. It looked shorter in the white box... :-/

@Gumby - I dunno about that: just think of the hundreds of imaginary diseases I could suffer from. The imaginary symptoms would be endless :p

Heh, I'm sure the university of Chicago will be bowled over by your presentation; they're fools if they are not >_>. On a serious note, though, I do wish doctors took on board that most patients are actually interested in the details of their disease, often to a great degree. I think it's a somewhat different culture in the US, but in the UK doctors look at you as though you've got 3 eyes if you ask anything too obviously technical. Heaven forbid you should want a detailed rundown of your test results and not just 'normal'. Thank god my current GI is much less stuffy on this front. I still wonder what his reaction would be if I asked him for my medical records, though, or to see pictures of my bygone colon... *sniff* ;_;

I would genuinely love to be able to read my entire medical records from start to finish. I'm fascinated by medical jargon, pretty pictures of colons, etc. Plus, going through my medical history from the beginning may fill in some gaps for me.

Anyway. I'm glad you're no longer obstructed, gumby, but you do sound quite ill still. It's obviously been an incredibly gruelling experience. I'm sorry the steroids didn't work better; you would be feeling miles better by now if they had. Take care of yourself and try to rest over the weekend. I gotta go to bed now; I have a psychological assessment tomorrow... :-/ (Not sure what it's for exactly; I just know I have one.)

Well, the psychological screening was a disaster :-/

I walked out. At some point it became clear that I wasn't going to be taken seriously. It turned out that it was an 'acute crisis' intervention, but I didn't find this out until near the end. So I'm there, trying to explain my situation, which is extremely difficult for me. The practical side: fine. That's what we talked about at first, eg my moving out of home. Then it moved onto the emotional side, which is extraordinarily difficult to talk about. But I try to. I talk about how my relationship with my dad has completely broken down, my Crohn's and surgery, and a few other things. I go briefly into the past, because I have to. The woman then said to me it sounded like my problems were with the past and they didn't deal with the past, they were an acute crisis team.

That's when I just lost it. I told her that I was sick of being fobbed off (yes, I used those words), that I had been fobbed off for years. Each time I saw somebody nothing was done. I told her I tried to kill myself in 2009 by taking an overdose and nothing was done. I told her that any improvements I had made had been down to me and that nobody else had helped me. I said something about failing the vulnerable. The woman just kept saying 'okay' to every point I made; she didn't even try to persuade me to stay, just let me go without saying a word.

And I don't regret a single word I said. I just hope my point was made. It probably wasn't. She probably won't take on board a single thing I said, but I'm still glad I said it, because the state of mental health treatment on the NHS is absolutely disgusting. It's so poor, I don't know why the NHS just doesn't do what it secretly would like to do if it could and shut down all mental health services across the country and plough the savings back into physical health care.

#endrant!

Anyway, having read your post, I'm a bit worried, gumby. The steroids are clearly not helping. I'd be inclined to phone Chicago and ask if you can go there tomorrow and be admitted. You may need a resection at this rate; I hope not, but you can't carry on the way you are. In the meantime, as long as you stay on liquids you should be safe.

Yeah, I have a legal right to my medical records. I just feel weird about asking, like the doctor will think I'm a massive obsessive or something: the problem lies with me.

Good luck. Come home early if the pain resumes... :-/

PS: Just had a thought. You may have been better off posting in your own thread, gumby, as I'm not sure how many people check my whinging threads... >.> I still think you should phone Chicago for an earlier appointment, but if you want other opinions, you can post in your own thread or make a new one. I don't think there's a lot else you can do: like you said, I don't think your own GI will be very helpful.

Post Edited (NiceCupOfTea) : 5/9/2014 8:56:39 AM (GMT-6)

Thanks, gumby.

But I'm honestly rather worried about you. Something isn't sounding right. Obstructions are pretty gruelling, but the after-effects shouldn't be lasting this long. Please phone Chicago today and see if you can go there tomorrow; at this rate I'd rather you overreacted, tbh.

Oh okay. Well, that's understandable; I hope your daughter has a great trip. Truth to tell, I'm a bit envious: about the most exotic place I go to is the foreign food section in Waitrose supermarket <_<.