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Crohn's Disease
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Posted 9/2/2014 11:52 AM (GMT 0)
Hi NCOT,
Here's your friendly reminder to call and get the results of your feacal calprotectin test;-) I hope you are doing ok. Love and Hugs, your pal Gumby
Posted 9/2/2014 12:59 PM (GMT 0)
thumbs up, gumby!
Posted 9/2/2014 9:16 PM (GMT 0)
Yo, gumby (and kazbern) :p

I popped into my GP's surgery on Monday afternoon and asked the receptionist for the result. She checked on the system and said it wasn't there. Asked her if it would be sent to the surgery (last time it wasn't, but my GP hadn't ordered the test that time), and she said yes. Not entirely sure I believe that, but I'm gonna go in on Thursday and ask again. I also have an appointment with my GP next Monday. By hook or crook, I'm gonna know the result of this test... ¬_¬

Love, NCOT x
Posted 9/2/2014 9:20 PM (GMT 0)
Good for you! Do you think you are having symptoms of the Crohn's returning? How are you doing overall??
Posted 9/2/2014 9:36 PM (GMT 0)
My stomach has been better for the past week - I think I had a bit of a panic attack after a particularly bad night... <_<. Still have some symptoms of gas, discomfort, etc., but not as bad as it has been. My rectal inflammation has obviously got worse, though, judging by the increased passing of mucus (and occasional blood). My hopes for a reconnection recede ever further into the distance... :-/

Mentally, I'm doing better than I was as well. Although I don't like to think about it too deeply, in case it brings on a panic attack... >_>

How about you, gumby? How are you doing post-surgery?
Posted 9/2/2014 10:10 PM (GMT 0)
Wow...I didn't know you were still having mucus and blood...something's up, eh?

I don't know how to answer your question as to how I'm doing. (Pathetic, I know) When regular friends ask how I am, I just say fine, cause it's easier then trying to explain. I'm tons better than I was prior to surgery. I'm back at work, and I don't think I'm anemic. For the most part the D has stopped. I seem to be on a cycle of not having any bowel movements at all for a day or two, and then I have "poop-a-thons" where I poop monumental amounts of poop and it can go on for a few hours. I swear I don't know how I can even produce that much poop!(not to be too graphic) The problem is that I can't predict when these episodes will happen. Sometimes it's in the middle of the night which is exhausting, or sometimes it disrupts my work day, etc. And then I have days of terrible gas pains. My GI is trying one week of Flagyl a month, and then three weeks off meds, because he believes I have SIBO and this will help. This week is my second month of trying this, and I'm not sure it is hurting, but I don't think it's helping either. I asked for a fecal calprotectin test and he said it wouldn't help. I think he's just too lazy to order it because he'd have to send it to U of Chicago and it's more work for him.
So, I'm not that bad, and maybe my body will adjust over time. But I'm definitely disappointed. I was imagining some time of feeling like a "normal" person....like my husband and kids without IBD. I can adjust to this, it's just not was I wanted. Sorry for being so long winded....I didn't know how to explain any other way. I'm going to insist on a colonoscopy before the end of the year. My local GI doesn't think it's necessary, but Dr. Rubin from U of C does, so I'm going to insist on it, just to make sure I have no active disease, especially since i'm not on any maintenance meds. Are you sorry you asked?;-)
Posted 9/2/2014 10:30 PM (GMT 0)
Yeah. Occasionally I have really strong urges to go; it's just like having Crohn's again... :-/ That said, it's nothing like as bad as when I still had my colon. If it got much worse, it would start to interfere with my quality of life, but at the moment it's okay.

Nah, don't worry: you weren't being long-winded. To be honest, I really related to the disappointed part. I'm obviously miles better off than I was before surgery, but I still can't help feeling disappointed that I don't feel like a million dollars. Especially when I read the UC folks saying how utterly brilliant they felt after their surgeries. Me, I struggle with fatigue and the constant background worry of Crohn's returning. I sometimes wonder whether anybody with Crohn's ever feels truly "normal" again, especially after surgery. Even in remission, it seems to be a curiously fatiguing disease. I'm probably just being my usual pessimistic self, though.

Can't believe your GI won't order a faecal calprotectin test. It won't detect SIBO, but it will detect Crohn's inflammation. Could you order one direct from the U of Chicago or do you have to go through your GI?

Deeply sorry! :p (nah, not really)
Posted 9/2/2014 11:13 PM (GMT 0)
I probably can get very assertive and demand the fecal calprotectin test, but if I've learned anything along the way, it is to pick my battles. I would love to just have the U of C doc just take over and manage my care, but it's not realistic...i am a 6 hour drive away and I know I need a local doc on board for emergencies. So it's September, and if the evil Crohn's is back, I figure I'll find out by December when I have my colonoscopy, or I'll get sicker and find out sooner. Or maybe I'll keep getting slowly better, and then I won't care. I think I'll just skate along for awhile. The "background worry of Crohn's returning" is exactly how I feel sometimes...you nailed it!!!!

I do feel worn out from the whole experience, or maybe I'm just getting old and burnt out. Hard to tell.
Posted 9/3/2014 2:47 AM (GMT 0)
I was wondering how each of you were doing and was going to post asking. This was good to "catch up" on. I am so sorry that things aren't going as swimmingly as you would like, but I am really grateful it's not horrid at the moment.
Posted 9/3/2014 1:18 PM (GMT 0)
Thanks Scifi!!
Posted 9/3/2014 2:30 PM (GMT 0)
Yeah, thanks scifi :p

I spoke a bit too soon about doing better :-/ The food I ate from yesterday caught up with me last night and I had a bad couple of hours. I'm okay today, though, apart from tiredness.

@gumby - I feel you on the getting old and burnt out part. The last few years have really done a number on me. I feel old before my time... skull
Posted 9/5/2014 1:03 AM (GMT 0)
Failed again to get my result... >.>

Stopped in at the GP's surgery. The receptionist this time claimed I'd have to get it from the hospital. So I tried phoning the IBD nurse when I got home: nobody there, natch. Didn't leave a message cos won't be here tomorrow - going to Ramsgate for the weekend.

Also my laptop charger is up the spout, so have ordered a new one from eBay. Forced to use my tablet to type. It's getting late, so I'll say goodnight. See you on Monday, folks :p
Posted 9/5/2014 2:22 AM (GMT 0)
Sorry! I hate getting the run around. Have a fantastic week-end though and let us know when you hear anything.
Posted 9/5/2014 8:13 PM (GMT 0)
Ramsgate? As in where Georgiana Darcy almost eloped? ;)
Posted 9/9/2014 10:16 PM (GMT 0)
Since I was following that last post about the calprotectin test, I will say that mine came back normal. Not even elevated.

I saw my GI at the end of last month after the scope and based on the scope, biopsies, and labs, I am in complete Crohn's remission thanks to Simponi. I guess it's been working better than we thought. It healed all the previous ulcers in my colon. I was shocked because I had still been feeling bad. We determined that what I'm having now is most likely job related stress aggrivating my Fibromyalgia. This seems just as annoying to treat as the CD as I'm on almost the highest dose of Cymbalta and it's not enough. Fibro is terrible and has been way worse since quitting birth control to TTC. Now I have period cramps so bad I'm back on narcotics pain meds for those. So lame. Can't win. Still a complete mess and now it's NOT the CD. ***, body. Man up and get yourself together.

Anyway, NCOT, keep trying to get those results! I'm sure seeing them will make you feel better.
Posted 9/9/2014 11:52 PM (GMT 0)
Well, I finally got the result off my GP yesterday. It was...... *fanfare of trumpets* ...... 59.

So, borderline result basically. It's slightly elevated above the 'normal' cutoff point of 50, but nothing which anybody in the NHS will take remotely seriously. My GP thought it meant there was some slight Crohn's activity going on, which I'm inclined to agree with (especially in conjunction with the low iron and my symptoms). I should be glad to finally know, but I am not. In one way it feels like the worst of all worlds. I can't relax, knowing I'm completely in the clear, but it's not bad enough that anybody will put me on one of the pathetically few meds which might work, i.e. a biologic (though I suspect I've busted my flush with the anti-TNFs anyway. Could make a case for vedolizumab though). My mum asked me "So what will they (the doctors) do? Wait until you get worse before they do anything?". I replied, "That's exactly what they will do."

On the one good side, I did have a really nice weekend away in Ramsgate. Pictures will be incoming... >.>

@Not creative - I dunno what TTC is (try to conceive?), but hopefully you can get back on the birth control at some point. And "stress" is a word doctors like to use when they can't find a physical cause: it places the onus of blame/responsibility onto the patient rather than them. Even if it could be stress, it annoys me when doctors pronounce it as the cause so confidently when they don't actually really have any idea. Personally I think it could be the Simponi itself; these meds are pretty heavy-duty stuff and some people do get bad joint pain, fatigue, etc. as a side-effect. But it's far from definite, and I don't want to make you worry about something else.

Hope you find a way of getting the fibro under control. It really, really sucks when you feel crappy and there is nothing obvious which can be done about it. Which reminds me, I got my GP to agree to raise the dose of my levothyroxine from 50mcg to 75. If that doesn't work for my fatigue levels, then I'm outta ideas... >_>
Posted 9/10/2014 12:20 AM (GMT 0)
Glad you had a fun week-end at least! I don't know much of anything about the fecal calprotectin test except what you have taught me, but I do get why you are frustrated. I don't know what to say. I don't like hearing you also have low iron levels...the whole thing is unsettling, isn't it? Can they at least do a repeat test in a couple of months to see if the numbers are rising? That seems like a decent middle ground plan. I hope your thyroid meds help with the fatigue too. Do you need an iron infusion? How low is your iron?
Posted 9/10/2014 3:42 PM (GMT 0)
Yes, I am currently trying to conceive. I have been on BC since pretty much starting my period and being off for the first time in 15ish years is ridiculously difficult since the reason I started BC was to control period symptoms including horrendous cramping (good news is, this is all the basis for some serious future mom-guilt!) I read that Fibro can make period symptoms worse so that's lame.

I would tend to agree with you about the stress thing if I didn't have what I consider pretty conclusive proof that my body does not react to stress well. In addition to years worth of stress-induced craziness, including my hair falling out a lot after something stressful, getting the shingles, and other issues. I work in connection with my state’s health insurance exchange. It has been a VERY stressful year for everyone involved, myself included. A few months into working under the stress I had to be put out on disability. I was diagnosed with fibro and started Cymbalta hoping it would help with anxiety, depression, and the pain I had been having for months without knowing why (my old GI just gave me narcotics and sent me away). Eventually I was sent to a rheumy who did some tests and was able to confirm the FM diagnosis. I was off work for two months and the Cymbalta helped so much. I was off the pain meds and feeling better so I went back to work (same place, I was looking for a new job, but it’s a very slow process). about two months later, I was flaring again and needed the narcotics for the pain and then went off BC to try for baby so I think all the stress of throwing my hormones out of whack has added to it all. Anyway, I’m fairly certain it is stress at this point as I already know I can’t handle it and there’s a lot here. Hopefully, I’ll be at another job within a month, and I can start feeling better.

Also, I noticed a difference when my thyroid meds were increased from 50 to 75mcg. I hope it does the same for you! This fatigue is killer, no matter what it’s from. I find myself turning off my alarm and going back to sleep without even waking up enough to realize it. I wake up after 10 hours of sleep and still want to close my eyes.
Posted 9/10/2014 11:58 PM (GMT 0)
@gumby - Yeah, I'll ask for a repeat faecal calprotectin test at some point - not sure when. My feeling is, things probably won't change very much in the next few months. Mine seems to be a relatively slow-acting disease, in that it took a few years to become severe the first time. (But once it did get a firm foothold, nothing could stop it. It was like a relentless inflammation machine.) As for iron, I'm not sure what my levels are right now. But my ferritin dropped from 68 to 14 over a few months - prior to that it had been fairly consistent at 60-ish for about a year after surgery. My GP prescribed me liquid iron, which I've been taking for about 2 months. I will ask for another iron test fairly soon, but I try not to ask my GP for a test every time I see him, so he doesn't learn to totally dread my appointments... :-/

@not creative - Yeah, there's no doubt stress affects some people in a very physical way. It never seemed to with me, particularly, but I am a stressy sort of person and do feel it emotionally. Hopefully once you get pregnant, the hormones will get back in whack again. Best of luck with that. *supportive hug* :p
Posted 9/11/2014 12:48 PM (GMT 0)
When my iron levels drop, it is my only objective sign that I am really in a flare, so I'm worried about you. Do people with ostomies have a harder time absorbing iron for any reason? If its not that, then what else would cause your iron stores to drop other than Crohn's?
Posted 9/11/2014 5:33 PM (GMT 0)
Good question, gumby :-/

Technically speaking, people with ostomies shouldn't have any trouble absorbing iron, since it's absorbed in the upper GI tract: well above the point where the ostomy is. But I'll ask on the Ostomy board about it anyway. As far as other causes are concerned, I can't think of any really. Think I get enough iron in my diet - am not a vegetarian. No visible sign of blood loss. Don't have heavy periods. Not on any funky meds which hammer the bone marrow.

I feel a need to get in touch with my hospital rising. I'll see if I can get anywhere with this Patient Knows Best crap. (Yeah, my hospital uses it. Made an account aeons ago. Never logged in, since I forgot the password.)

Patients do know best all right. They know how freaking hard it is to be listened to or see anyone.... *shakes head*
Posted 9/11/2014 5:42 PM (GMT 0)
Oh NCOT....I can definitely relate to what you are saying. I'm not completely comfortable with my medical management ( or lack thereof) at the moment, which is why I am going back to see the doc at U of Chicago in October. I think you need to chase this down. I don't know about you, but when I'm doing well my ferritin is within normal limits. It doesn't drop for no reason.Even when I am very anemic, I never really see blood in my stool....I think it comes from up high and is a slow, gradual process. Sorry...I know this is the last thing you want to deal with!!
Posted 9/11/2014 5:48 PM (GMT 0)
Nah, it's okay, gumby. I appreciate the feedback, to be honest!

All right, I'm fired up now. I'm gonna chase this one down. My hospital have done literally bugger all since surgery and it's getting on for two years since I've had it. (How time flies when you're having such fun... :-/) My GP shouldn't be monitoring my Crohn's disease: it should be my hospital's job.
Posted 9/11/2014 6:57 PM (GMT 0)
I am so sorry with all that you've had to go through with, NCOT. You're in my prayers......I know that doesn't mean tons to you (in terms of belief), but it's all I can do for you. I care about you and want you to know that I'm doing all that I can. Wish I could help.
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