You can ignore Crohn's but...

...Crohn's doesn't ignore you.

I'll try to keep it at least short if not sweet. Saw the GI yesterday for my post-colonoscopy appointment. She told me that my Crohn's in the colon was bad - really, really bad - and that I needed to start treatment ASAP. This involved a regime of entocort and 6MP. I argued about the 6MP, as I'd been on this for 6 months last year and felt that it made no difference to my symptoms whatsoever. I was exasperated. I said what's the point and asked what would happen if I took nothing. She said "the Crohn's will kill you."

Now there's a response to take the wind out of your sails and my sails duly deflated. With the 6MP I think they'll take me up to a dose as high as they dare, maybe 75mg (I was on 50mg last time). There's also another reason for taking it, which is to get approval for Remicade in 3 months' time. From the sounds of it, you have to be almost dying in the first place - and certainly on a maintenance drug - to get approved for Remicade. And even then, they'll only pay for 3 infusions and no more.

My haemoglobin is also very very low apparently, and I'm being referred to a haematologist. Also losing loads of protein. And I eat red meat, dairy, eggs, but I suppose it's what you're not absorbing rather than what you put into your mouth which matters. Incidentally, how come in 11 years nobody has mentioned B12 to me? Should've asked about that but it didn't cross my mind at the time.

One thing I did ask was how did they determine if the medication was working, as I was quite curious about this. Seems to be based on a mixture of blood test results (Hgb and protein, in particular) and symptoms. Fair enough. I suppose they can't exactly do a colonoscopy every time.

I was feeling very down yesterday. (For reasons other than my Crohn's; my dad had a stroke and we ended up back at the same hospital we'd been at before only two hours earlier! But thank god it is looking more and more like he will make a full recovery from it.)

Anyway, the moral of this somewhat rambling post is this:

Never ignore Crohn's. It won't ignore you. I have to say, I feel a little bitter that no doctor ever saw fit to explain the seriousness of Crohn's disease to me. One of the reasons I was so blasé about it for so long was because no doctor seemed to care about my treatment. They were happy enough to prescribe the mesalazine, the Imuran, or whatever, but did not show the slightest concern when I stopped taking said drugs. After my 2007 colonoscopy which even then was showing - in the words of the report - severe, extensive CD, the IBD nurse cheerily said "it was worse than it looked". (Think because the ulcers didn't run very deep, so had no fistulas, etc.) But you can have severe, even dangerous, CD withOUT the typical complications of strictures, fistulas and so forth. Been nice if somebody had told me that, too. If you're new or inexperienced with Crohn's: just be aware that the disease CAN be kept under control but you need to be on a maintenance drug. Mild Crohn's will probably only progress drastically if it goes untreated for a long time, as what happened with me.

I hope - if anybody read this to the end - that the last paragraph helps somebody, if just one person.

Post Edited (NiceCupOfTea) : 5/5/2010 6:59:51 AM (GMT-6)

This is good to know. Thanks!

thank you.

Yep. Sunanda Kane did a good report about the importance of taking meds vs. those who didn't.

Before I went off to university, I had a discussion with my GI, which really determined how I perceived my Crohn's disease for the next ten years.

He told me it was about maintaining a decent quality of life and that medical tests are secondary to how I feel.

I know it's unfair to put it all on him, but my parents were there too and they heard what he said and I was just a kid who didn't know any better.

But I thought that as long as I feel alright, I don't need to go to the doctor, I don't need meds, and I can eat whatever I want.

It may have taken 10 years, but in that 10 years, my Crohn's has gone from mild inflammatory Crohn's with remission thanks to Asacol to severe fistulizing Crohn's and Remicade.

I just never felt like I was sick enough to seek care because I always compared how I felt at the time to how horrible I felt as a kid and told myself to suck it up.

I still can't believe that I can have fistulas and no other symptoms.

You and me, Tea, are walking talking reasons for maintenance meds!

It seems like my post struck a chord with a few people after all. Thank you folks :p

On an unrelated note, I actually feel really happy today. Something nice, which I couldn't have predicted, happened. It's slightly nerve-wracking because I've almost forgotten what it felt like to be happy! If this continues I shan't know what to do with myself ;p On a Crohn's-related note, my entocort and 6MP should be ready by tomorrow, so I'll go and pick those up :D

I hope the entocort does kick in fast, 'cos I could use a break from this disease, as could just about all of us I'm sure <_<.

@gypsyfp - I feel for you with the fistulas; I do hope the Remicade closes them up. As for what your GI said, I'd say that was pretty remiss: it's possible to feel mostly all right for several years with active disease simmering away. How you feel isn't always a good gauge to what's happening internally, especially if you have a slow-burning form of Crohn's rather than one which comes on fast and acutely.

However, what's done is done. Can't change the past, can only deal with the now :-/

So true, I've had two deaths in my family due to perforations (they did not have Crohn's) so I've always understood just how serious things can get. To me taking my meds is no different to take vitamins - its all to help my health. And I am a strong believer in the 'prevention is better than cure' theory, the pros of taking meds for me far out weigh the risks of getting ill but then when I flare my Crohn's is severe so I'd never unneccessarily risk getting that ill again!

I'm not sure how to put this, as I don't want to dissuade anyone from taking the meds that are working for them.

But there's this thing called the One Third Rule:

1/3 will be truly helped by meds, remission

1/3 will have partial reduction of symptoms

1/3 will not be helped by meds.

1/3 of what? Of instances of flares, not of people. So it important to take the meds as you can and if they stop working to move on to the next.

I am down to one last drug, with one exception, which I'll get to in a bit. Humira is the only common drug therapy left for me to try. I have not responded well to any of the others, either they do nothing bit add side effect to symptoms, or my system cannot tolerate them. Immuran put me in the emergency room at week 3. Remicade interfered with my breathing on the second dose.

I am writing for those who are like me.

I am holding off on the Humira, in part because I have an abscessed fistula and I keep getting mixed advice on taking that while infected , from doctors. In part because I'd like some time to adjust to this flare and to ready myself in case the Humira doesn't work. Admittedly, given that I am prone to side effects, the idea of getting the Humira ones, some of which are irreversible are in my thinking too. If/when I do decide to take it, I will have my head in a much better place and will do so with optimism.


In the mean time, I've found out about Low Dose Naltrexone and have started that. Yes I notice side effects, but hey, they're nothing and I don't sleep well when I'm in pain anyway.

6 weeks in, my symptoms have reduced, pain is down, appetite is up and I'm not asss weak as I was -- couldn't stand long enough to make dinner, now I can. I am by no means in remission, but I do feel small improvements and I have been told LDN can also take months to fully effect the system.

I can handle it if this drug doesn't work, I know it won't heal the abscess, and the abscess is not helping the cd. Since the abscess is draining and the anti biotic didn't help (I can't take cypro/flagyl), the doctor's are leaving me to it. Surgery is not an option, and I am not happy about this.

Being Canadian, the hardest posts to read are the ones which show how people cannot afford to go to a doctor, or their meds. This just breaks my heart.

My point, is that not all drugs work for all people all of the time, and some people to have refractory disease. With the Immuran reaction, my doctor at the time made it seem like it was my fault. It took me 3 years before a nurse informed me that my reaction was not uncommon and that it was nothing I did wrong.

Next to not being able to afford medical care, is a crack in my heart for those who are blamed when the meds don't work.

This doesn't mean we don't try to figure out what does, but I for one would appreciate a qualifier with the assertion that we all must take our meds all the time.

BE well,

Hmm... Okay, let me answer MToronto, 'cos I feel he/she didn't quite get my point...

MToronto2 said...
This doesn't mean we don't try to figure out what does, but I for one would appreciate a qualifier with the assertion that we all must take our meds all the time.

I never would claim that there weren't folks with refractory disease, or those whom drugs wouldn't help. In fact, so far I'm in the refractory disease boat. I did not make this plain in my original post, because I felt it would be too long and boring to give an account of my medication history, and not very relevant either. But I will try to give a potted history now. I tried at least four mesalazine (or 5-ASA) type drugs, including the particularly evil sulfasalazine, and had immediate allergic reactions to all of them. Over a decade, three courses of prednisone failed to work beyond the first 1-2 weeks. Two courses of azathioprine (Imuran) failed. Last year - which I did mention in my original post - I went on a course of 6MP. Now that actually did at least begin to work after 2-3 months, then for whatever reason it just failed; it stopped working. I got about a week's worth of relative (not total) remission with it.

And that's not counting non-Crohn's drugs. I haven't been able to find an oral iron I could stomach (as it were) and had an anaphylactic shock to an iron transfusion three years ago - the only reasons I have agreed to try another iron transfusion is because a) my anaemia hasn't gone away, in fact it's probably got worse and b) my GI reassured me there were iron compounds which didn't cause an anaphylactic reaction. And then there's SSRIs, another class of drugs I couldn't tolerate. And tricyclics are yet a further drug-based evil for me.

So I do know from personal experience that drugs can, and don't, work.

Now for the other side of the coin, the reason why I said what I did.

I started out with mild Crohn's disease and even milder symptoms. I was unlucky from the off in not being able to tolerate the first line of IBD treatment: the 5-ASAs. However, allergic reactions to them are rare and the vast majority tolerate them pretty well. I think if I'd been able to tolerate them they might have got my disease under control at an early stage - I say "might" because there are no guarantees about anything in life, least of all everyone's favourite medical condition, IBD.

My brother is a good case in point. Don't want to talk about him too much because he wouldn't ever discuss his disease on a forum, but he's had his Crohn's for slightly longer than I have and has kept it largely under control for all that time time with colazal and occasional bouts of steroids for flares. And he's not the only one. There's hundreds of thousands of IBD sufferers out there keeping their condition under control with antiinflammatories (the 5-ASAs) or the immunesuppressants (Imuran/6MP) or, in the severest cases, the biologics. They're the ones who don't post on this forum because they have little need to. And because the disease isn't a very big or important part of the lives.

But I would wager the majority of those are on maintenance meds of some kind. The point I'm (very clumsily) trying to make is that drugs are not a guarantee of remission, particularly in the case of severe, refractory disease from the outset. But without them it seems that Crohn's sufferers (not so sure about UC) stand almost no chance of having a lifetime of mild, stable disease which doesn't get any worse.

By the way, I don't know about the one third rule you mentioned. If it's true, a 66% possibility of remission or reduction in symptoms is still better than a near 0% possibility, imo.

aoccc said...
A large number of people come on this board with little or no health care and are hurting. Telling them to try 8k a crack meds doesn't always fix the situation. I know it is hard to imagine but there are alternatives, you have to find them.

I wasn't telling anybody to jump straight onto the Remicade. In fact, to the contrary. I'm all in favour of starting with the mildest class of drugs first, then - only if necessary - working your way up. Lack of money/insurance is another issue. Obviously, if you can't afford to pay for medication you need financial assistance, which the folks of this board are very good at advising on. It's far from ideal but it's a lot better than absolutely nothing.

And yes, there are alternatives but the alternatives must be nearly as expensive as the drugs themselves: high-quality probiotics, supplements, organic food, etc. - none of this is cheap.

And now... I'm seriously tiring. Time to hit "submit" and spare HW an even longer post! ;p

I succeeded, yep :p

^Fair do's with everything you said in that last reply. To be honest, my heart goes out to those who come on here with severe disease for whom nothing is helping. I wish I could help them.

And now ... I'm off to get a nice cup of tea (I didn't pick my username for nothing :p), bite to eat, pick up my entocort (if the incompetent surgery has got it; I don't think they've got a Crohn's prescription order right first time yet), pick up my aunt, pick up my dad from the hospital and collapse.

It seems that the immune suppressants and I don't get along so well, but your right I've got two to try at some point. I am on LDN, @ week 7 I can say I am seeing a reduction of symptoms and I'm sticking with this immune support for the time being.

As for surgery, apparently, it's not an option. I have one of the top surgeons in Canada, who has seen me through a lot. His concern is that any surgery will leave me worse off than I am now. I will get a second opinion for my own peace of mind, pf course, but, sadly I am inclined to agree. Even with his care, surgeries have not gone well for me. While I did get a 9 year remission with the first one, I also got sepsis, which nearly killed me (surgical error: due to the severe adhesion and endometriosis effects, my rectum was knicked. My colon was defunctioned and I got a pouch for 4 years -- no biggy, actually, but then the alternative was death) When I got reconnected, they had to replace the abdominal mesh and this went very badly.

I am missing all of my central abdominal muscles due to an auto-immune reaction to that abdominal mesh, (that was torture) and there is no place to put another ostomy on me.

The confounding bit is that I have "debris" in the fistula, food particles and or a gall stone, so until these "foreign" bodies have worked their way out and the infection is reduced, I have decided to avoid the immune suppressants, out of a realistic concern as to what reactions may occur due to this complication.

I am aware the LDN will do nothing for the infection, heck antibiotics did nothing, but at least, since it's a fistula, I don't need a drain. Whoo.

Suffice it to say, I am aware I am living on the edge and I am not happy about it.

And tsitodawg, Thank You, smiles...

I reacted to Remicade. And, as long as there is infection there is high risk of complications by the immune suppressants... more infection but one...

So..