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I did tell this board I was going in for surgery, didn't I?

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Posted 7/21/2015 7:24 AM (GMT 0)
I could have absolutely sworn I posted on this board before I left, but can't seem to find an old thread...

Well anyway, I went in for surgery on the 9th July and was there for 12 days. Just got back yesterday :-/

Went in for an ileostomy reversal and ileorectal anastomosis - a reconnection of the ileum to the rectum. The 3-hour operation itself went very well. My surgeon certainly seemed happy with it. It was what happened afterwards that was basically the nightmare. Contracted norovirus the night after the operation. Hell on earth. Nobody believed me it was a stomach bug (despite half the ward going down with the same bug!) Doctors just kept on telling me it was "normal" or I was suffering from an ileus. An ileus is when the small bowel stops working after surgery. Personally, I doubt I had a total ileus, as I was still passing green bile, but my bowels were sluggish.

I had about 10 days of vomiting, stomach pains from hell (which Tramadol didn't touch), constant nausea, etc., before I finally turned a corner. It was very, very, very, very gruelling.

I'm home now and very glad to be here. I'm concerned I still seem to be having low-grade fevers and that my CRP, WBC and platelets were still high only 2 days ago. My CRP was recorded as being 130. To me, that seems too high this far out from surgery. However, nothing short of dying would have kept me from leaving hospital yesterday. Hopefully it's nothing serious and I can get on with the business of recovery.
Posted 7/21/2015 8:35 AM (GMT 0)
Miranda,

First of all, you're not losing it, you definitely posted about going to have this surgery, as I remember replying to it.

So glad the surgery went well. Sounds like a "nightmare" indeed with what you've endured.

I certainly hope this all works out fine. I'm sure your blood markers will all get in line soon. Wishing you continued improvement. Keep us posted.

Tom.
Posted 7/21/2015 12:34 PM (GMT 0)
Oh my gosh!! I am so sorry! I hate when doctors ignore us. I am glad the surgery itself went well. I am glad you are home! Keep us updated!
Posted 7/21/2015 3:10 PM (GMT 0)
I responded at the UC forum....glad you're finally out of there and feeling better!
Posted 7/23/2015 6:05 AM (GMT 0)
Good to hear from you NCOT. Sounds like hell but glad it's over now! Hopefully a smoother recover from here on out.
Posted 7/23/2015 6:07 AM (GMT 0)
I must have missed that announcement! I had no idea! I'm so glad you are home and doing better. Getting a stomach bug right afterwards is just the worst luck ever. I always worry about getting more then what I come in with in there.

I'm happy to hear the surgery was successful though. I hope things go more smoothly for you from here on out!
Posted 7/23/2015 6:23 AM (GMT 0)
She posted earlier on the UC forum, she's pretty tired still and trying to regain energy but I'm sure she'll post back soon to all our well wishes and relief that she at least had a successful surgery.
Posted 7/24/2015 4:24 PM (GMT 0)
Hi guys :p

Not much to report. I think I'm doing slightly better than when I came out of hospital on Monday, but it's clear recovery is going to be a slow process. I'm not having a zillion BMs a day like I feared, and the urgency is containable. But my bowels are still uncomfortable with their new arrangement: in fact that's the thing I'm expecting to take by far the longest to recover. I'll probably get my usual energy back after a few weeks, but it will take at least a year for my bowels to behave as though they'd had this setup their whole life - if not longer. There's a lot of retraining of the nerves and muscles involved.

I knew this would happen and it is a tad demoralising. But hopefully in the longer term it will all be worth it.
Posted 7/24/2015 5:06 PM (GMT 0)
HI NCOT - I am happy that the surgery went mostly as planned. Will you eventually be able to take something to slow your bowels down? I know it's not the same at all, but I had about 3 feet of small intestine removed a few years ago and was literally going to the bathroom like 10 times after any tiny morsel of food or drink. IT can become very frustrating to say the least. Are you good pain-wise? I know pain meds can help slow things down too, which in your case may be a good thing. Good luck to you!
Posted 7/24/2015 9:14 PM (GMT 0)
Hey Miranda,
Sorry to be late to respond. I've been entertaining my extended family and exhausting myself so I haven't been online. I'm glad you are back home, but it sure sounds like it has been rough! Can the high CRP be from surgery recovery? I don't know how that works. I hope you keep feeling better. I'll watch for your posts when I get a chance.
Posted 7/25/2015 8:57 AM (GMT 0)
Myrne - I can take Imodium if I want. I'm seeing my GP in a few days and am wondering whether to ask her to prescribe some. On the one hand, I don't really need it at the moment. I live in a ground floor flat and going to the toilet is easier here than in hospital. On the other hand, when I'm finally able to be more active, I don't really want to have to worry about finding toilets when I'm out (had this problem to a certain degree even with a bag; I was neurotic about emptying it). As for pain, that's well-controlled by 50mg Tramadol 4x a day at the moment.

Gumby - Nice to hear from you :p I did google it, and it's normal for CRP to dramatically rise in the first few days after surgery. Didn't see anything which said how long it took for the CRP to go back to normal after that, though. Judging by the fact my docs wanted to keep me in a bit longer, I'd say mine was taking longer than normal. Not really surprised after being hit with a stomach bug for a few days (which none of my doctors believed in, but whatever rolleyes)
Posted 7/26/2015 6:29 PM (GMT 0)
I hope you get past this bump in the road to go on to a good life that will now be free of crohns symptoms!

Good luck!
Posted 7/26/2015 9:03 PM (GMT 0)
Hey Miranda,
I'm just checking in to see how you are feeling today?? I hope better
Posted 7/27/2015 9:54 AM (GMT 0)
pmedic - thanks!

gumby - thanks :p

Yeah, I am actually feeling a bit better today. A nurse came round at 9:15am to change my dressing: I had literally just started having a shower. I'm afraid I made her wait while I finished the shower... >_>. It was a bureaucratic nightmare getting the nurse to come and visit me in the first place - I had to deal with a district nurse who sounded more machine than human. But once I got over that particular hurdle, the nurses who have come to visit me have been very good.

I'm no longer dependent on painkillers. That said, I'm still taking Tramadol - just not nearly as much as when I was in hospital, and certainly not needing to top it up with liquid morphine. One time in the hospital I vomited two Tramadol straight back up - I was devastated. Knew they wouldn't give me any more, and I was right. Had to make do with crappy Oramorph until the next dose!

My bowels are still acting like they hate their job and, occasionally, life itself. I'm passing 10-15 liquid BMs a day at the moment (though it's often a tiny amount when I do go). It's not quite as bad as it sounds, as there's rarely severe urgency involved. But still, this is the one thing I am hoping improves!

Phew. Time to go and zonk out on the sofa for a bit :p
Posted 7/27/2015 4:09 PM (GMT 0)
What other medications are you taking? Did you feel better when you had an ostomy? Do you have disability or fmla? I hope it all slows down soon. Frequent diarrhea is exhausting. I hope you're able to eat well.
Posted 7/28/2015 9:26 AM (GMT 0)
Willetta - I'm taking levothyroxine, that's about it. Not on any Crohn's meds. I made that decision after my first surgery. Several reasons why. 1) 5-ASAs (Pentasa, Asacol etc.) are now known to be almost entirely useless in treating Crohn's disease and I was severely intolerant to them in the past. That means there's no point in my being on a mild 5-ASA; I would have to start with 6MP or azathioprine, much stronger drugs; 2) The evidence for 6MP/aza as prophylactic (preventative) drugs is weak; 3) I don't want to be on immunesuppressants if there's nothing to treat; 4) my disease began very slowly the first time, so I am hoping it will return similarly slowly a second time.

It's worked for me so far. I've remained Crohn's-free since my first surgery.

Yeah, I felt better when I had an ostomy :-/ That said, I was expecting to go backwards for a while. If I'm no better than this after a year, I'd frankly consider a return to the ostomy. But it's early days for this type of surgery, and I do expect to be much better after a year - fingers crossed. I'm at least able to eat. I have to be careful to not let myself get too hungry, because then it's easy to overeat. (Which is what happened when my parents came round yesterday. Going several hours without eating and then having a large-ish meal is the worst thing I can do at the moment.)

Cheers for asking! :p
Posted 7/29/2015 4:43 PM (GMT 0)
Hey NCOT,

I just checked and happened to read about our 2nd surgery. Now you are an experienced surgery survivor. Another medal in this hard road! You are a great writer (I already said that a book is not far away from you - sugestion: write about illness ranting and rage - there is a comic edge here).

Best wishes!
Daniel
Posted 7/29/2015 6:23 PM (GMT 0)
Hi Djin.

I just can't get over those people who have had 10+ surgeries. Right now I'm in awe of them. I've had two surgeries and feel like I have been through the wars. I almost feel like I deserve a medal: the Iron Cross, or whatever. (Anyone who has had over 10 surgeries is automatically eligible for the Victoria Cross.)

I'm busy writing my book - in my head <_<. One of these days I might actually start it for real. Thank you muchly for your kind words.

NCOT :p
Posted 7/30/2015 1:45 AM (GMT 0)
I am glad things are starting to be a bit better! You've been in my prayers.
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