This letter from the IBD nurse irritated me more than it should have done

Still mad.

This reminds me of the colonoscopy I had nearly a year ago, after a hospital stay where I'd been on Pred. It wasn't clear, far from it, yet the IBD nurse managed to persuade my dad that I was doing great, that I wouldn't need surgery etc - that I was on the road to remission. Two months later it changed to talk of having a permanent ileostomy, ffs, something that my dad couldn't understand in light of the previous upbeatness.

And nor do I, in all honesty. I'm at my last straw right about now. I'm sick of meds making me sicker and the idiot nurse ignoring all evidence in front of her eyes that I'm not doing well.

The nurse doesn't seem to know anything, so I'm not entirely surprised she wouldn't have a clue. I'm wondering if her conclusions are drawn from what my consultant says though. That's a bit more worrying if they are.

Urgh, I'm so utterly demoralised and pissed off, words can't express. Not due to see the consultant until October, by which time I'll have calmed down I suppose. Doesn't help with right now, though.

This just feels like being swept under the carpet. I'm sick of fake 'optimism', which actually feels much more like a convenient way of ignoring things than it does anything else. At this rate, I think I may as well consent to having surgery, because I literally don't see things changing any other way.

Myrne - Cheers.

I've decided what I'm going to do next. I can't speak to my GI over the phone; he's just not obtainable that way. However I do have an email address. Fortunately I have a legit reason to email the IBD nurse, so I will use that legit reason and then also add that I'm not doing any better, that I don't feel like the inflammation is at a satisfactory level, and so on.

(The legit reason relates to Cosmofer, something the nurse mentioned in the letter but not over the phone. I had an anaphylactic reaction to that years ago, so I'm not taking that again. Luckily there was another iv iron which did work.)

Do you mean Remicade or Methotrexate dosage? Remicade I'm not sure about, but the MTX is 25mg by injection. That's the highest dose for IBD, I think. (Cancer patients have much higher doses, but then they have cancer...) The reason why an immunesuppressant is often given along an anti-TNF is that it delays the build up of antibodies to the anti-TNF. However if it makes you feel ill and it doesn't improve, then it's not worth it, imo.

Surgery would be quite drastic in my case: removal of the colon and rectum with a permanent ileostomy - plus the diseased portion of the terminal ileum. Because I have Crohn's throughout the whole colon, a resection is not possible, because there is no healthy tissue in the colon to reconnect to :-/

I know the Crohn's will come back, and that makes my heart sink to be honest. I can only hope that it comes back at the site of the anastomosis, and is easily removed. I would be screwed if I developed extensive small bowel disease, but I hope that is not likely.

Anyhow... Good luck with the Remicade :p

Hi NCOT,
I hate going through nurses for serious things. I understand that that is the system you have to work with, but I think e-mailing the GI is a good next step. And I agree with Crohnnie Too, that you should let the letter sit for a day or too and remove all emotion. Stick to objective facts and symptoms. When my hemoglobin dropped to 7 I was in the ER feeling like I was dying! I know you think you whine too much, but you are really sick and I totally understand why you are so frustrated. Don't give up, just slowly and steadily nag your GI's office until they can give you some satisfactory answers and a decent plan. Hang in there!!!!

Thank you both - appreciated!

Unfortunately the email address is for the nurse rather than the consultant :-/ It's an IBD helpline, although I doubt the 'help' part. If I wanted to contact the consultant directly, I would have to write him a letter.

I do not think my IBD nurse has been very helpful in the past (how did she get to be runner up IBD nurse of the year?! Will bug me for years to come that one), but I will give her another chance - partly out of cowardice, since if I bypass her by trying to contact the consultant directly, it will probably look a bit weird. (It's the system, as was said.)

My GP is pretty good, so I might make an appointment with him as well. He might be able to chase things up if necessary: he's done so in the past.

I don't feel like I'm dying, but I do feel incredibly washed out - not sleepy tired either, just very very washed out. And a bit earlier, I was shivering/trembling but without feeling the slightest bit cold or feverish... :-/

Anyway, thanks... I will hang in there, if only to bug the nurse :p

EDIT: Oops. Hang on, bananagirl, while I read your post. It wasn't there before I posted <_<.

NiceCupOfTea, when are you going to consider alternative treatments to your case? Diet modification? Supplements, instead of the meds? I'd hate to hear of you suffering with your current condition anymore than you have to, and without trying something new -- you might just be missing something.

stereofidelic89 said...
NiceCupOfTea, when are you going to consider alternative treatments to your case? Diet modification? Supplements, instead of the meds? I'd hate to hear of you suffering with your current condition anymore than you have to, and without trying something new -- you might just be missing something.

I've been considering it on and off for years, but I've simply never been able to bring myself to seriously try it. (Not that I'm against anybody else doing so. If they feel it works for them and they are happier doing it than not, all power to them.)

It's hard to explain why. I suppose because I find it hard to understand why I'm so obstinate when everyone else around me seems willing to make the necessary changes. For a start, I don't actually have any faith that diet and supplements would work any better for me than meds; in fact, I have a strong feeling that they wouldn't.

Now, that's not the same thing as saying I know they definitely won't work, but the small probabilty that I'm wrong still isn't enough to motivate me. It's partly because I have completely run out of patience. I don't have it within me any more to spend months trying something new, and waiting: waiting to see if it helps or doesn't help. I know for some people SCD has taken up to a year to start working, and I quite literally do not possess that patience.

But - and this is the kicker - even if a strict diet worked wonders for me, was the miracle solution, etc., would I be happy with that? Sounds like an odd question, but I'm not sure I would be. For whatever it's worth, picture this scene to understand why.

Rewind to one Sunday afternoon a few weeks ago. Me sitting in a gorgeous pub with my extended family. Drinking a pint of the nicest ale I've had in probably two decades. Genuinely content, smiling, not secretly wishing it to hurry up and end so I could go and lie down and nurse my stomach.

I "paid" for that weekend trip by taking Pred for a few days. (Note: never go from 40mg to 0mg, the transition is brutal. Never, ever do it if you have been on 40mg for longer than a week, as it could be dangerous rather than merely brutal.)

Anyway, that's besides the point really - just explaining why I felt so well that day. The point is I was drinking beer. (I know I'm female, but I've never been a wine drinker.) I felt normal, like I wasn't ill. Now, if I was on the SCD, I would not have been able to partake of that beer, and I would have missed out on a simple pleasure. Doesn't sound like much, but to me it was everything, really.

It's probably a bit cheesy, but to me remission and health consists - dietwise - of being able to eat and drink merrily, not to excess, but to satisfaction. The SCD may perhaps give me more energy, but it would be like living in black and white as opposed to technicolour. It would be a pale, bloodless imitation of good health - good health but missing half the aspects that make good health so cheering.

Obviously, everybody is different. I'm just describing how I feel. In fact, I would appear to be the anomaly in today's health-conscious world and the SCDers increasingly the norm. But still, it's a dream which I can't let go of. Feels like literally all I have left some days. A sentimental dream of good times, good food, good drink and good company.

(I'm betting you wish you hadn't said anything now... <_<)

Cheers, stereo, for the non-judgemental answer. Appreciated.

I have to say, I've never felt that diet played much part in my disease. I've never been able to isolate trigger foods, for example. Obviously eating a vindaloo curry and a raw onion salad would not be the best idea ever, but all food in general feels like it's hurting when it's passing through, even bland ones. In practice, though, I have ended up cutting some food out of my diet almost entirely, eg salads. I had some salad a week ago and the resulting experience of undigested bits of tomatoes floating around in my colon for two days was a miserable one.

Also, I have tried a couple of diets already. The first one was a gluten-free diet a few years ago. Stuck to it for 6 weeks, but it made no difference to my symptoms whatsoever. There wasn't even a partial success, something that I could build on. Then, earlier on this year, I did an elemental diet - would not wish that upon my worst enemy, tbh. Only stuck it out for two weeks, because I was like psycho woman on it. And my digestive systems got worse, not better, despite the drinks being absorbed in the duodenum only. (Think I may have reacted to the artificial sweetener in it, artificial sweeteners being the one thing I think I may be genuinely intolerant to...)

I don't feel so well, so I'm probably rambling a bit.

Long story short: I do believe that diet modification helps some people, sometimes to a drastic degree. Wouldn't dispute that at all. I just have a feeling that I'm not one of them. It probably sounds like I'm just saying that so I can continue to have cake and whatever. But I also genuinely feel that tinkering with what I eat doesn't make a difference.

Still, maybe one day I'll be able to try a diet of some sort. No idea what yet... :-/

*raises beer glass* Anyway, cheers! :p

It varies. The less I eat, the less pain I feel overall, and I'm not eating much at the moment. I would literally not eat at all if I could, but for obvious reasons that's not doable.

But no matter what or how little I eat, there's always some discomfort and the discomfort is strong enough to make it hard to concentrate on things which require concentration, like reading or watching a 2-hour movie.

I do have some Tramadol as it so happens. I don't know why, I feel uncomfortable about taking a painkiller every day, so I don't. If I was in agony, I'd have no choice, but because the pain/discomfort is bearable I tend to just bear it. I'm in discomfort right now, so maybe I'll try taking some Tramadol and seeing how I feel an hour later.

Thanks!

I'm in a chronic flare-up most of the time, although occasionally it flares up into a more acute version. Then I really am groaning on the floor in pain. However, so far steroids have always brought those flare-ups back down to 'normal'. I only really feel much better at 40mg, so there is not much incentive to stay on the steroids at a lower dose. I wouldn't anyway; they're too toxic.

It does suck when nothing works and the meds you take seem to make you even iller =/

Absolutely no suggestions, since I'm in a similar boat, but I hope that your flare-up comes to an end somehow. Some folks do go into remission spontaneously, without the aid of medication.

ambling said...
The report lacks many important pieces of information. A G.I doctor couldn't realistically base the success or failure of medication(s) on a one off CRP reading.
They normally consider many aspects including; white cell count, neutrophil count, ESR, albumin, full iron studies, MCV etc.
G.I's also take into account; stool quality and frequency, urgency, amount of pain, fever, weight, full history of medication use, and general quality of life, to name but a few important criteria.
This would all be backed up by scans/colonoscopy reports.

It is of concern if a G.I bases important decisions on such limited data!
Don't let it get to you though, as it isn't uncommon to see this sort of lack of thoroughness. Next time you chat bring up the issues you have, not with that nurse (!) but with the G.I. in charge.
Good luck.

This is what I expected of my GI, but not all GI or even "Crohn's Specialists" are the same. My CRP is currently 17. A week before that it was 13. My GI said that since it wasn't raising very fast that I'm probably not having a flare up. I mean, my white cells aren't raised and my scan showed no blockage or "large" ulcers. What he is failing to take into consideration, is that when I had the 18 abscesses in March, my white blood cells weren't raised. And then in June when I had my second surgery and I had another 3 abscesses drained, I had no raised white blood cells and no fever. I haven't had a fever any of the times there was something wrong and I should have had one.

Currently, I am still having a lot of pain, my stools have increased and are practically liquid, I am nauseous most of the time, and just two nights ago I had a fever. I didn't want to go into urgent care again unless I had to (I have spent more of the year in the hospital than out), and my GI says that since my blood tests are coming back with low numbers, the Mesalamine just needs to be increased and I should be fine.

I just feel like my GI keeps failing me, and I have no other choice for a GI doc.

NCOT
Sorry you are not yet feeling better. I understand the desire to sit with friends and family at the pub and have a glass of beer. If there was a magic wand and I could have one thing on SCD, it would not be cake, or bread, it would be beer.
I had nothing for a long time but over the last few months have introduced dry red wine. In fact I am becoming a bit knowledgeable about Russian River Penot Noirs. It is not as good as a beer but it really can be very good and I can and do enjoy it with friends and family.
Have you ever tried LDN? Many folks have success with that drug.
I try to eat 24 hour bone broth or organic gelatin daily. The broth makes great old school soup that I do not think would bug you, but for me it is so very soothing. Have you ever tried activated charcoal or Epson salt baths? Loads of folks find these to help. If I am feeling poorly, an epson salt bath, a nice candle with a soothing scent, and trying to relax, can help (of course if you are feeling too poorly, then this might be too much).
I find SCD yogurt soothing, but this might be too much for you right now (also can be a bit of a pain to make).
I just wish for you that you could find some relief.
Instead of thinking about going on a diet perhaps you could identify a few really safe foods, or things to do (salt bath, massage, acupuncture,...) that you could go to when you are really feeling poorly.
You most probably have tried them all at one time, but even if you have and they did not work before, maybe they might work now to give you even a bit of relief
Healing thoughts
Dave