I'm absolutely tired of this

Paul - I believe you. The possibiilty remains that it's just coincidence - or maybe the herbs really have something in them which helps. I dunno. But I do believe you.

Deb - I'm sorry it's so bad for you. I know you said you quit taking maintenance meds, but have you tried any meds for the diarrhoea? Questran is meant to help diarrhoea that's caused by bile acid malabsorption (I ought to try it myself but haven't done... If ever I see my GI again I'll ask him about it). Or there's loperamide or, somewhat more problematically, codeine. My apologies if you've tried all this and none of it makes any difference. A lot of the time it doesn't: Imodium doesn't do anything for me, for example. But they do help some people and it's pretty safe to take Imodium long turn if you don't have active disease.

It's like people who get a cold and then spend 15 minutes moaning about it to whoever will listen. Dear god, it's a cold. The worst of it will be over in 2-3 days. These are invariably the same people who never ask me about my Crohn's or ask me how I'm doing (or if they do ask me how I'm doing, expect a quick "fine" and nothing else).

Edit: Thanks Lab! Just seen your post and will read it now.

Well it sounds like you're free of Crohn's for the time-being but dealing with other health issues (possibly caused indirectly by either the Crohn's itself or the meds you take for Crohn's). That's no fun either. And what you said about putting your life back together really resonated with me. Over the last two years that's what I've been trying to do. I've got my own place, I've got a voluntary job, have just joined a gym. I've repaired my previously broken down relationship with my parents. And I still feel like Sisyphus, rolling a boulder up a hill and never getting it to the top before it rolls down again. I can't even contemplate dating and even in the incredibly unlikely event I met anybody, it would be too late for me to have children now.

I would have struggled with life even without the Crohn's. I had depression and anxiety and - as it eventually turned out - autism. Then add to that a disease which just basically knocked me out of the running for several years. It was debilitating and it still is.

Post Edited (NiceCupOfTea) : 8/11/2017 5:19:03 PM (GMT-6)

NCOT: It is not a coincidence, because after I took the medicine, I felt better, a lot better. I still run into symptoms these days, but I am not miserable. I feel to live a happy life, you need 3 things in life (1) education and vast amount of knowledge. I am not in medical field, but I studies both Western medicine and Chinese medicine by myself; (2) strong financial resources; (3) friendship and support from family and friends. After all, rich people do live longer, don't they?

NCOT, I have had this disease since I was a kid and the plan was to enjoy my life and then check myself out whenever I felt like I had had enough.
Seriously.
I lived with a very short term mentality throughout my 20s and early 30s.
Therefore, I'll never begrudge another person for wanting to make a similar choice.
But then I had kids and everything changed for me. One was a surprise and the other was planned. Either way, I chose to have them. It was my decision.
And so I have taken suicide off the table. I made the choice to live for them and fight to stay here for as long as possible, and that's part of the reason why I'm finally having fistula surgery next week...
That's what living is. A choice.
And we all have to make that choice every day.

NCOT,

Just checking on you.

Hope things are looking better for you.

Hang in there NCOT....

Hi folks.

Well, Monday was hideous and I don't want to talk about it, other than to mention I had the worst nosebleed I'd ever had - I'd never seen so much blood before. Today I've just mainly been bone tired but I'll take that over meltdowns and tears.

@gypsyfp - Having children won't be my saviour, as, at 42 years old, I'm already at the point where I'm virtually too old to have them naturally. Plus I'm not in a relationship nor is there the faintest prospect of my being in a relationship on the horizon.

@nssg - Holy crap, that's a bad outcome for your friend. How long ago was her surgery? Has she been tested for Crohn's? I do hope things get better for her. Anyway, I was like you: I wasn't in a position to wait around for new treatments. I was steroid dependent and stuck on a high dose of pred by the end. Without pred I was back in the hospital: it was a vicious circle I couldn't break out of in the 18 months before I had surgery. I feel like life was much easier for me in the early days when I had mild Crohn's (or at least mild symptoms). Surgery saved me from dying from toxic megacolon, or whatever, but I still have all the issues that you mentioned.

@Clo - I'm still here :-/

@aimz - Thank you! Hugs back...

I was diagnosed with crohns 20 years ago, but had symptoms for twice that long.
It certainly can wreak havoc with our bodies physically and mentally, and I have always come away from reading this board with knowledge and an appreciation for all of the members who share their experiences and struggles, and I hope everyone finds comfort and hope when dealing with all that goes along with crohns or any disease when it seems to be especially difficult.
When reading about gumbys flashing lights in her vision, this began happening to me about four years ago. Very scary, and my eye dr. Thought it may be a symptom of a migraine. My regular doctor ordered an MRI to rule out any brain abnormalities. I was diagnosed with migraines. I only have gotten them maybe a few times a year, with bright flashing strobe like lights coming first. I take a medication called sumatriptan when I experience these flashing lights and then i lay down if possible to let it work. The worst one actually happened while I was driving. Afterwards I have a headache that may last a few hours. I also have blepharitis and my eyelids look pink most of the time and the tissue has actually thickened some from inflammation. My eye dr. Does tie it in with crohns. I also have canker sores now and then and a big sensitivity to heat that used to make me break out in a million hives, but thankfully even though I still have the sensitivity, I don't get hives anymore. And then there is the joint pain! It is an awful disease that has so many issues, and this board has helped me so many times to get helpful information that has helped me deal with it.
I will say a prayer for you ncot...please take care.

Post Edited (ragbag) : 8/15/2017 9:13:37 PM (GMT-6)

@nssg - It sounds like adhesions are the cause of your friend's symptoms. Adhesions are a nightmare complication, since in effect there's nothing which can be done about them - having surgery and cutting through the adhesions tends to just create new adhesions afterwards. Your friend could have SIBO, if so, a course of antibiotics might help. It's a pretty lame suggestion, but I can't think of anything else to try :/

The downside of a universal healthcare system, at least in the UK, is that mental healthcare provision is considerably more limited and patchy than physical healthcare provision. Nobody wants to spend any money on mental health, so unless you can afford private therapy (and I can't), you are stuck with monthly visits to the GP and little else. All the lies told about support are just that: lies. Try actually having a mental breakdown and accessing any of this support. I have to say, from what I can tell the situation has got much worse over the past few years. It wasn't wonderful 10 years ago, but it was definitely easier to get seen by a psychiatrist or a counsellor, even if it was only for a few visits. But now it seems almost impossible to see anybody. The place that I was at for mental health services has gone steadily downhill over the past five years, and now they are booting me off their books altogether. As you probably know, I was diagnosed with autism a few years ago and I attend an autism social group once a month. And it's not just me who's getting the terrible treatment/services. It's everyone who has the misfortune to be disabled, autistic, poor or unable to cope with life. This country is getting more like in America in its approach to despising the people at the bottom of society.

I'm sorry, you are right, I am depressed. The feeling that I am completely on my own (besides my parents and it's not always smooth sailing with them, particularly my dad) doesn't help. And yeah, I have tried antidepressants - several of them over the years. Long story short, I'm not a fan and I think at this stage - as depressed as I am - I'd rather remain clear-headed than go back to that groggy, numbed state. They don't even work very well, i.e. I still get breakthrough depression on them. What they definitely don't do is make me feel happy.

I think a high-fibre diet would cause more me even more pain. Tbh, I've never felt like food makes a lot of difference to me: whatever I eat it causes suffering in some way a few hours later. As for antibiotics, no, I've never tried those. Well, I have, but not since having surgery I mean. It is something I could ask my GI about next time I see him. VSL#3 is too expensive for me. Steroid foam didn't work 2 years ago. And I wouldn't categorically rule out a faecal transplant enema, but dunno who to ask for that one <_<.

I originally had the same thought as you: that a small part of the colon would be easier to keep in remission than the whole colon, but it seems to be just as intractable as the entire colon was. The only difference is I'm not as systemically ill as I was before, i.e. I no longer get crazy fevers.

@ragbag - Yeah, people don't think of extra-intestinal symptoms when they think of Crohn's, but they can be an absolute bugbear. I've never had flashing lights but I used to get migraines which would begin as a dull ache behind one of my eyes, then progress to a throbbing agony if I left it too long. Ibuprofen would usually knock it on the head, but sometimes I would have to take it every day for a week until the pain finally disappeared. I still get those headaches but they're not as bad as they used to be: uveitis has become my main problem now. And I have Hashimoto's disease, another autoimmune disease. I had none of these problems before I got Crohn's. They might have happened anyway, but it seems strange that they came along when basically my Crohn's stop being mild and flared up heavily. The only thing that doesn't fit the pattern is skin sensitivity: that started after my first surgery and I think oxycodone was the trigger for that :-( It's 95% better than it first was, but can still be an issue, particularly at night.

Well I have written a positive essay. Sorry about that, folks, but having written it all I'm now too tired to go back and try to make it shorter :-/

If it made me happy and full of energy it might have been worth it, but I wasn't feeling that dissimilar from my normal depressed self

Exactly. Duloxetine did knock the repetitive, looping, negative thoughts on the head for a while, which actually was a welcome respite. But after a few months those came slowly but surely creeping back. I was already on the standard maintenance dose of 60mg and not willing to raise it. Basically, after about 6 months it was hard for me to tell any difference between my antidepressant self and my normal, non-antidepressant self.

I have tried Imodium. My surgeon prescribed me about 6 months' worth of the stuff shortly after my second surgery, which was nice of her but unfortunately didn't make much, if any, difference to the urgency I was experiencing at the time. I genuinely feel like I'm resistant to nearly all drugs, since so few of them seem to work for me or barely at all if they do.

As my pillcam showed active Crohn's, that's the most likely cause of my symptoms. Admittedly that was several months ago and perhaps Entyvio has put it into remission, but my 'gut' feeling is that it hasn't and the Crohn's is still active. Of course I could have an infection as well, but I think that's fairly unlikely. Either way I'd really like to knock the Crohn's inflammation on the head first of all - if I can manage that and I still have symptoms, then I know it has to something else, e.g. IBS, a pathogen, SIBO.

I know I shouldn't take NSAIDs, what with having Crohn's, but I do occasionally :/

As far as depression meds go, none of the SSRI's worked for me (prozac, paxil, zoloft, etc.).

about 13 years ago, I was just diagnosed with UC (which I had never even heard of) and had been hospitalized for 10 days, then had to complete my (very intense) senior year of college, then in a state of mania and wanting to "show my body who's boss" I started doing fitness competitions and developed an eating disorder that might have killed me, and the last straw--my mother was diagnosed with terminal cancer. I. Lost. It. Had a complete mental breakdown and couldn't get out of bed, cried all day, wouldn't go out in public exceot to go to tge gym in the middle of the night, binged and purged, and thought about ending it after several months of this. Nothing and no one helped. UNTIL I found a doctor who prescribed me *Wellbutrin*. It didn't make me feel strange or medicated, the only way I k ew it was working is that one day about a week after I started taking it, I woke up and didn't immediately feel dreadful. Then the following week I started going out in public during the day. Then within a couple months I was functional. I have been on Wellbutrin for 13 years now and while I still struggle with anxiety and depression, I have never again been debilitated by it.

I'm sorry to hear that you are feeling that way! I know how you feel cause I'm feeling it too! I've had this problem for 26 years now and had surgery in May which has given me even worse Diahrrea and Gas. I've pretty much spent the whole summer by the toilet seat!
I have tried Various Brands of Kefir, S. Boulardi, Probiotics, CBD, Cholestramine, Immodium, Oats, Marijuana, the Brat Diet, etc. etc.and still it continues. The same thing happened to me after the surgery I had before this one. The only thing that ended up slowing the flow then was a growing stricture of scar tissue!
I have a Drug Trial Doctor now that has me on Entyvio which is not working but he still wants me to stay on it. What a total waste of time!! (He must be profiting from Shares in the Company)
I've tried almost everything the Drug Companies have come up with but I know they're only "High Tech Bandaids" of varying degrees of effectiveness.
Lately I fantasize of ways I can leave this world and as the years go by I become even more ANGRY that the problem has STILL NOT been fix!
I just can't get over the Fact that the Drug Companies and the Medical people are actually making money from us who are suffering! How can this obvious "Conflict of Interest" be solved?
I then fantasize that the only way this idiocy will ever end is if every Crohn's Sufferer would meet at a rather long and large cliff site then line up along the edge and hold hands and then jump off it together! I think the event should be filmed and put on the News Worldwide! The lasting Message to the World could be, "THEY GAVE UP WAITING!"

There is a theory now that the Condition is caused by a Bacterium called Mycobacterium Paratuberculosis in short "A MAP Infection" from Cows. You can Google MAP + Crohn's Disease then view everything on the subject including the research.
It seems that this is not a New Theory either and Dr. Hermon Taylor in the UK has been studying it for 30 years. The Bacterium hides within white blood cells and the only way to detect it is by its DNA signature.
The other day I read a Summary type Article on Crohn's and how the US will readily spend $450 million on research of Cancer or Diabetes but spends only $4 million on research for Crohn's. And why would the Drug Companies want to cure it for there's NO money in it for them?
So I DON'T hold out much hope that I will ever get rid of the infection that I have!!! When I first became ill my body did NOT lie to me when I started to get Night Sweats and I felt like I had an "Infection" even thou I was told "No it's not one!" by a supposed "Professional". But I can't really blame The "Professional" thou for they were only a "Trained Idiot!" A person who originally desired to help people but then got trained at a Medical School whereby they only see things a certain way and don't think to be an inquiring detective nor come at a problem in an entirely different way. They're no longer curious but fill a round hole in a round way and collect a regular pay cheque and never think to QUESTION the Status Quo!

And see I'm Okay now that I have finished my RANT! But if I were invited to speak to a group of Medical Professionals and/or the Beef & Diary Industries or Government Policy Makers I will be doing some YELLING! I'd of course include some very astute but Constructive Criticism.

I will tell them how it's RUINED my Life & Health, my Career, my Finances, my Social Life, my Family, my Living Situation, my Travels, my Holidays, my Dreams, my Hopes & Aspirations, my Talents, my Potential etc. etc. etc. I will be in their face and I will make sure that I leave a lasting impression!
Any which way one cuts it and tries to deal with their illness, it should still NOT BE HAPPENING!
THIS injustice should not be "managed" nor "accepted" nor put up with!

@Kate - I'm sorry to hear nothing has worked so far! Dumb question perhaps, but have you been recently tested to make sure your Crohn's hasn't come back? There isn't any point on being on Entyvio if it isn't even keeping you in remission - although do give it at least 6 doses to be certain, as it's one of the slower-acting biologics.

As for MAP, there's a pretty interesting discussion about that on the UC board right now. Firstly in the locked thread, and now in the thread I made moaning about the locked thread. I recommend checking it out, but I would be cautious: don't put all your eggs into the MAP basket. It would be nice if something came of it, but I suspect, just like every other drug out there, anti-MAP therapy will work for some and not for others. Most GIs are insanely convervative when it comes to contemplating anything outside the conventional meds (even if the conventional meds have demonstrably failed), but there are GIs out there who will prescribe MAP antibiotics. If you're interested, ask around, on the UC board on this site, crohnsforum.com and on MAP support groups on Facebook.

I'm not ready to jump on that particular bandwagon, but in a year or two's time, who knows? I certainly haven't had any luck with biologics.

Crohn's still ruins too many lives. It's a sh!t disease which doesn't get a lot of attention, because it's comparatively rare. If it was as common as cancer or diabetes, researchers would be working night and day to try to find a cure. The big bucks are in diseases everyone knows about, not some obscure crappy inflammatory bowel disease that remains hidden behind bathroom doors. Understandable in a way, but still absolutely maddening for those who are left to suffer.

@randynoguts - I know the feeling :/ But dogs are good. I'd love to have a dog of my own, but it's probably not possible (one of the joys of being a social housing tenant).

Hi Betty Sue. Thanks for your words - they are appreciated :-/

Hopefully your son is young enough that he will be able to benefit from medical advances over the next few decades. The biologics have already made a big difference to some people, but have their flaws (they are horribly expensive and tend to stop working eventually). We just need a few more breakthroughs along the lines of biological medications, and perhaps we can finally knock this sh!tty disease on the head.