Really disappointing GI visit

I can't go on like this, I cannot go on, I'm at my last tether. I've had months of waiting already (for tests, results, etc.) I'm facing more months of waiting (for the MRI scan, surgeon appointment, surgery).

The reversal has been a nightmare from start to finish. I obviously would never have had it done in a million years if I'd foreseen it. What's even worse is, it's a nightmare which may not even have an end to it. I just know that this pain is not going to go away of its accord and I am utterly sick and tired of it. I hardly sleep. I can hardly eat; on a semi-liquid diet. The people in my life abuse me. My doctors don't believe me. Painkillers are sh!t and hardly touch the problem.

I can't go on waiting months and months and months for something that never gets any better, I just can't. I've precious little to live for anyway. My life has become hell. Crohn's disease has utterly ruined my life, it's ruined it.

Hi Miranda,
There is a slightly untranslatable Yiddish word verklempt, with the closest translation meaning completely and utterly overwhelmed to the point of being unable to cope or reason, and that is the state I think you are in.

Of course you have depression and/or other psychiatric issues but that has absolutely nothing to do with the pain and it is completely understandable to me why you are so upset. So today is not your day for making any decisions about what comes next....you need a good movie and sleep and face this again tomorrow. So skip the rest of my post til tomorrow if you want but here are my thoughts for when you are ready:

First of all, wait for the MRI results...it's not to far away and maybe it will show something that the flex sig did not. Second, I think maybe your surgeon can help you get another opinion from another GI. You have return of active Crohn's disease and your disease course has been severe....so even if you don't have obvious severe disease now, a very good case can be made for taking biologics now. I can help you find research articles to back this concept. Everything I have read is that in 2016, recurrent Crohn's after surgery should be treated with biologics. My thought is that you express yourself much better in writing than you do in person, so maybe you need to work on crafting a very objective summary with your disease history and the current research and advocate for what you need. I wouldn't do that until after the MRI, because I suspect that something is wrong and they will be able to see it. Your Fecal calprotectin numbers alone speak to severe inflammation....you have objective lab results to back you up.
My other thought is that although this disease can be very elusive and difficult to figure out, the disease makes itself obvious eventually and they figure it out. I share your frustration that it can take forever while we all suffer, but it will show itself and they eventually will believe you!
As far as being overwhelmed with your future, try to put it completely aside for now and focus on absolutely anything else that you can.......you can't have an answer for that when you are completely overwhelmed, so don't even try. Keep writing and we will try to get you through this, one step at a time. I have to go to play rehearsal, but I'll check in later.

After phoning my mum, having 3 cups of tea, taking some codeine, and talking to my friend via email in no particular order, I'm finally feeling calmer... :-/

@gumby - Thanks massively for your post. There are some points I wouldn't have thought of, but yeah, probably best not to think about it too deeply right now. But one thing I will mention is that it felt like going back to 2000-2010, where basically nobody seemed to take my Crohn's seriously and I ended up going through years of hell and an eventual colectomy. My current GI was the first one not to give me the runaround and applied to put me on Remicade after our first meeting.

He did say today that he thinks the meds might work better now that my disease is less severe and I'm inclined to agree with him. But if it's gonna take another 10 years before I get on a biologic, then god knows what will happen in the meantime.

Seeking a second opinion might not be a bad idea at this point, although I'm slightly suspicious that most doctors just agree with whatever the first doctor said.

I'm starting to ramble now. Good luck with your rehearsal tonight - hope it goes well and your stomach gives you a break.

@therearemiracles - I've tried several antidepressants and I must admit I'm highly wary of trying another, after a couple of really bad experiences. I'm sorta unstable as it is, and I've had a couple of antidepressants make me really suicidal: it was terrifying. On the other hand, I've been on other antidepressants which didn't make me any worse but not any better either - sometimes I've had a short-term boost in mood, but nothing which lasts.

Antibiotics didn't help when I had a colon; dunno if they would help now. Things are pretty different, I suppose. I dunno, I'll try the pred enemas first of all, I think. Not expecting them to do much for the pain, but if they reduce the number of bathroom trips, it's better than nothing.

Isn't an MD the same thing as a doctor?

Edit: Just saw your second post, BRelaxed. I'll read it now.

I'm not sure what your living situation is in, so disregard this if it's impossible or you've already tried it.
Have you thought about fostering a puppy or volunteering to be around animals?
Animal therapy has helped a lot of people because it reminds people that they can love and are capable of being loved. Also, it keeps people alive because they feel responsible for the care of another living thing.
Here's a link:
https://en.wikipedia.org/wiki/Animal-assisted_therapy
As someone with Crohns since childhood, I always reserved the right to kill myself if things got too bad for me, so I'm not one to say this thinking is wrong. I only shared this potential plan with my closest friends and it always horrified them. I just chalked up their horror to a lack of information and personal suffering. I had to give up this plan when I became pregnant with my son. When I had him, I made a personal decision to continue fighting no matter what. Suicide was no longer an option because someone else needed me more than any pain I could feel.
I imagine that some people feel just as strongly for their fur babies.
Keep up the good fight, NCOT.

Hey NCOT, I am so sorry that today sucked so badly. I really wish there was something I could do. I agree with a lot of what @gumby said. I think that having the MRI and the appointment with the surgeon will help point in another direction. Are any of them willing to give you stronger pain meds for the meantime? Not sure if that's something you would be willing to try or not.

I just got home, and I hope you are sleeping by now and that you are reading this tomorrow;-) To me, it feels like your depression and your Crohn's are two completely separate issues and they are getting all mangled up together. Obviously your disease course has caused or added to your depression, but I've been reading your posts for a long time, and I completely believe you that something medically is going wrong and it is not because you are depressed that you are feeling the pain worse or some crap like that. That doesn't mean you don't need help with the depression. To me it means you need Both kinds of help.

So I'm re-thinking the second opinion on the GI. If he is the original guy who prescribed you the Remicade, maybe reminding him of that might not be a bad idea. In my head, I'm imagining you waiting for the MRI results (because that might fix this problem for you if they see disease in your small bowel), but if that doesn't help, then write a very objective, factual letter with your symptoms, the fecal calprotectin results and other abnormal labs. Mention the FACT that you have active Crohn's now, and you would like to start biologics before the disease spreads and becomes worse. I would attach a well respected research article on medical management of Crohn's post surgery, Then I would hand deliver it to his office. In the letter, include your phone number and ask that he call after reviewing your request. This will save you from having to wait months or weeks for your next appointment with him. And yeah, if you can get pain meds or even a tapering course of Prednisone after the MRI, that would be helpful too.

You are exceptionally skilled at expressing yourself in writing. I imagine from your description that you fall apart in person when you feel anxious or that you are not being understood. I would be happy to help you with the letter.

It's not time to give up! I know you are frustrated, but we can fix this!

I'm still waiting for my c.diff results. My GI called this morning when I was working and I missed his call. I called right back, but he never called again.....big sigh!! The waiting never ends.... I'll check in tomorrow morning....hope you sleep well.

http://www.medscape.com/viewarticle/772973_7

Good medical management article post surgery to back up need for biologics...see the algorithm on page 5

Oh, Miranda, I'm just so sorry...I don't even know what to say.

Hi folks.

Saw my GP today. At least that wasn't a total disaster. On the other hand there's not really a whole lot GPs can do. Got prescribed mebeverine: I gave it a go this evening. Not sure if it helped or not. Anyway, I've just been beyond exhausted all day. I'm about 2% less exhausted now, but just feeling really, really, really, really low.

@Gumby - Yeah, the GI I saw yesterday was the same one who prescribed me Remicade (and later, Humira). I don't know what to do. I don't think I have the confidence to fight to go on a biologic if the MRI scan is clear. I suppose I must come across as being a lot more confident in text than I really am. In real life I have no confidence at all. In truth I just feel like I am an expensive burden, the sort of heartsink patient who only ever has problems and never gets any better.

I also worry that asking my GI to phone me would be overstepping some invisible line. It clearly wouldn't be in America, but in the UK it's a different culture I think. Doctors are more remote and definitely harder to get in touch with.

I know, I know. Underneath all the bravado, I'm a coward.

PS: I checked out your link. It was interesting. Arguably I fall into all 3 risk categories :-/

@bania - Okay, thank you! I live in Aylesbury. That's quite close to Oxford if it helps <_<.

@JaSanne - Thank you. I'm not sure what to say either, but my thank you is sincerely meant!

@Rebel1992 - Urgh, I so feel for you. As though having Crohn's isn't life-ruining enough, you get morons around you making it even more isolating. Hopefully you're at an age now where you can start putting your moronic peers behind you. One thing I would recommend is not to use sites like Instagram or Facebook, or to be very, very selective about who you add as friends. I literally have never used Instagram, but I imagine it's the same sort of thing as Facebook, where people pretend what great lives they have. Most of it is a pretense, too. I had an aunt on FB who went in for that sort of thing and, believe me, her life was not so wonderful really.

But yeah I know where you are coming from - I sometimes look at the people on this site who had UC, had surgery, and are now always proclaiming how much better their lives are and recommending surgery to all and sundry. It burns, it really burns. I always knew the Crohn's would probably come back, but to not even get a few years' remission first....

I'm not seeing any light at the end of the tunnel today, I must admit, but maybe one day. I hope you do as well.

Oh, and from that article I sent you, I think you would be in the highest risk category because of the aggressive pattern of your disease course, and you probably should have been put on biologics right after your re-connection surgery. At least that's how I interpreted the information

I know that none of us can completely understand someone else's experience of life, but there are parts of your struggle that I definitely can relate to. I also know that your first thought will be that I have a family and a purpose, so this is all far different for you and all of that is absolutely true. But here are my thoughts for whatever it is worth to you...

For me, Crohn's (or IBS, or C.diff, or whatever is wrong with me at any given moment) has taken a huge toll on my physical and emotional enjoyment of life. I keep having hope for things to get better. It was profoundly disappointing to me after recovering from the re-section surgery that I was still struggling. I imagined that I'd be in remission and be back to feeling fine, like my old days, and since surgery, it never happened. It is a chronic grief, always there, and I can't tell you how much I hate it.

But the one thing that I have discovered for myself, is that if I'm going to be uncomfortable and in pain, I'd rather be uncomfortable and in pain while doing something interesting rather than sitting home. There have been many bad days at work where I have felt miserable, but in the end still glad I got up, took a shower and made it through my day. I felt terrible during the Star Wars movie the whole time. But the movie was really fun to see and I'm glad I went. I used to wait around to feel better and cancel plans because I didn't feel well. I've gotten to the emotional place where I'm tired of waiting. I'm getting old and this is my life, and I intend to live it. I'm still struggling with social isolation.....I worry about making commitments that I can't keep and disappointing others. That's why this play I'm in was such a big emotional risk for me. It isn't me missing out on being in the play, it's me messing up others' lives that is a constant worry for me.

So the mindfulness stuff that the psychologist was trying to teach you seems dumb on one level, but it is hugely helpful on another. With mindfulness techniques, you can train your brain to just focus completely on the present moment, without thinking about the past or future, and for that moment in time, you can try to take your focus away from the physical sensations of pain and notice every little thing about that moment in time. So for example if you are watching the Star Wars movie, you are simultaneously thinking about the plot, sound effects, visual effects, acting, etc and before you know it, the pain is way in the back of your mind. Of course the pain and reality of stuff comes roaring back, but at least you get a break in your head once in awhile. So mindfulness won't fix your life, but it does make coping with it easier to some degree.

It takes a lot of emotional risk to go out there into the world and start living. But you are far from worthless. You have gotten me through some of my worst times....I so value your friendship and I know others here feel the same way about you. I really think if you took a risk and volunteered or did something that felt useful for others, if not for yourself, your life would feel better. You are smarter and more talented than you ever give yourself credit for. You also were dealt a crappy hand of cards in life. That's your reality, but you have some power to change your experience of it.....I hope you take the risk.

I'm at my parents house and typing on my Hudl tablet, so my reply may be shorter than usual as I *hate* typing on a tablet or phone. Or it may not be :-/

I've had Crohn's now for 16 years and for the majority of that time I've lived my normal life, however badly - I've never been very good at living. But now... It's almost like something has snapped inside of me, I either don't want to or can't do this anymore. I don't want to pretend I'm okay when I'm not. Done it for years and years, going out for meals, etc, paying the price later.

I feel sick at the thought of doing it for another 16 years. I'm sorry. I know you can't take away the pain for me, any more than I can take away your c. diff, Crohn's, etc. But to me I'm no longer interested in struggling through it because I see no point. I do still read stuff, watch stuff, and play dumb games. It's not like I'm contemplating my navel 24 hours a day. But the pain comes right back literally the moment I stop, it's like I never had a break from it at all.

Thanks gumby but I think absolutely nobody can help me now.