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Crohn's flare up- What do you think of this? Any suggestions?

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Crohn's Disease
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Posted 12/30/2013 10:16 AM (GMT 0)
Hi all,
I have been feeling really crap for the past couple of weeks (after being in the hospital last month with a perforated bowel due to flaring up after having a baby in Sept etc) so I called my dr, who told me my CRP had gone from 17 to 38 (it was 135 last month when I got put into hospital), so obviously tapering the prednisone is not doing good things for me (started at 50 last month, now at 20). She bumped me back up to 40mg, have a CT scan booked for tomorrow, more bloods taken today, and she mentioned the resection again as well as going on Humira. At this point we are going to see what the scan shows and go from there.
Do you have any advice, or questions I should be asking, or anything you see wrong with possibilities mentioned above. Although I've had Crohns for 8 years apart from my initial flare when I was diagnosed (which was pretty bad) I have very luckily been in remission- until having this post natal flare, so I feel a bit clueless on everything.
Any comments appreciated :)
Will just add I am also on 50mg Imuran, which I have been on for years.
Thanks for reading yeah
Posted 12/30/2013 10:25 AM (GMT 0)
Congratulations on the baby! :) I am so sorry that you're so sick right now. I have a 5 mo and have been hospitalized 3 times in the last two months, and it was heart-breaking to be away from her.

50mg Imuran is really not a strong dose. Before a resection, I would definitely try the Humira (or Remicade first). See what that does to help. Also, 50 of pred last month and down to 20 already is really, really fast taper, especially with you being so sick. Usually you stay at 40-50 until your symptoms are almost gone, and then you go down only 5 mg every 10 days. I'm a little concerned that your dr had you taper so fast. Is it a GI?
Posted 12/30/2013 10:28 AM (GMT 0)
Thanks :) luckily when I was in the hospital I was able to have my baby in there with me! As for the fast taper, I may have been a little over eager to push that. My CRP was down to 7 and everything was looking good and I was feeling great up until about 2 weeks ago. I hate the prednisone and was perhaps a little vocal about it! Was also having weekly appointments and tests which were also looking good.. Sigh!
Posted 12/30/2013 11:15 AM (GMT 0)
P.s was yours a post natal flare also? Hope you are feeling better, 3 times in 2 months is rough, especially when looking after a little one!
Posted 12/30/2013 12:05 PM (GMT 0)
Mine was kind of a post-natal flare. I got thrush from breastfeeding, and it went systemic so I had to be hospitalized to get rid of it with IV antifungals.

Then I got mastitis from the awful cracking from the thrush, and oral antibiotics weren't working, so I had to be hospitalized to get IV antibiotics and get it all calmed down.

All of the hard-core antibiotics and antifungals made me flare really bad. I got an abscess and went to the ER (it was a Sat). They cut and drained it, but then I went septic and was stuck in the hospital longer.

Now I'm flaring still but can't get my Remi infusion bc the thrush is back, so I'm on pred but that makes yeast grow like crazy, so I'm caught between a rock and a hard place.
Posted 12/30/2013 12:29 PM (GMT 0)
lol, I hate pred too and will try to get off of it as fast as possible every single time. :)
Posted 12/30/2013 8:34 PM (GMT 0)
Ahhh what a nightmare you poor thing! Breastfeeding is difficult enough without throwing Crohn's complications in the mix!
Posted 12/30/2013 11:21 PM (GMT 0)
So sorry your not feeling well.  I know exactly where you are coming from, been in and out of hospital a few times this year.  I am on Humira and it is working perfectly, feeling much better.  I would give it a try if I were you before going through surgery.  Take care of yourself! 
Posted 12/30/2013 11:52 PM (GMT 0)
I wouldn't worry about the speed of the Pred taper: it's perfectly safe to go from 50mg to 20mg in the space of a month: I was dropped from 40mg to 20mg in a week when I was in hospital after surgery. That was an unusually fast taper, but I didn't have any problems from it. Just make sure to taper off 20mg - especially the final 10mg - more slowly, otherwise you probably will suffer with withdrawal symptoms. My advice is to get off the Pred as fast as you safely can; if it doesn't knock you into total remission*, there is absolutely no more mileage to be had from staying on it.

50mg of Imuran is a low dose; you could triple that, depending on bodyweight and tolerance.

Next step is to try Humira, I guess. Best of luck: hopefully you will respond well to it.

*By remission I mean total absence of symptoms, but a steroid-induced remission is not considered a remission in the medical sense of the word. Steroids are just there to make life bearable until a maintenance med kicks in.
Posted 12/31/2013 9:44 AM (GMT 0)
Well, my dr has booked me in to see a surgeon this week, to see where we go from here. CT scan isn't until Monday now (long story!), she seems to think I NEED the surgery, that the small portion of my bowel that had the perforation and abscess is not going to function properly and will need to be removed at some point regardless. She doesn't want me staying on the pred long term either. She is thinking surgery, then continue on the azathioprine and possible Humira if necessary. I wonder if she is jumping the gun on the surgery? She does seem to think its only a small portion of bowel that needs to be removed (I guess scan will tell us more) and that is the best option to make me feel better...
What do you think?
Posted 12/31/2013 10:43 AM (GMT 0)
@aussie - thanks. I actually pump, which is a bit easier than breastfeeding (at least for me). She never really latched on. Now I'm so grateful for it because we didn't have as many problems with having to switch to a bottle while I was in the hospital.

I don't want to contradict your dr too much, but unless that area is really diseased or something, I would say she's jumping the gun a bit on the surgery. I think it's a much better idea to try the biologics first and THEN go the surgery route. You just open yourself up (pun intended, lol) to all sorts of problems when you start cutting things away.

You are on a really low imuran dose anyway, too.
Posted 12/31/2013 10:53 AM (GMT 0)
That's what I am thinking too!! I think I will speak to the surgeon, ask a LOT of questions and then put off the surgery for as long as possible and push a bit harder to figure out some drugs that work for me.... The whole thing is really stressing me out!
You are good for sticking out the pumping for as long as you have!
Posted 12/31/2013 3:08 PM (GMT 0)
Depends entirely on the situation. If you have fibrotic scarring, no amount of meds will make that better: the damage is permanent.

If it's just a few inches of affected bowel, I would probably go for surgery. If a few feet are affected, then yeah, I would try the meds first.
Posted 12/31/2013 3:32 PM (GMT 0)
Hi Aussie!  I jsut wanted to chime since you mentioned perforation.  I ruptured in 1990 (wow a long time ago!).  Mine was a total rupture with sepsis so I did not ahve a choice and had emergency resection.

If you have a perforation, I am concerned that you let it go.  Definitely have a deep conversation with both your surgeon and your GI.  I personally love that I had the bad part of my TI removed as I seemed to gain many years of remission after it.  If you have a perforation, I do not know if meds alone is enough to get you back on track.  I know surgery sounds scary to many, but I look at it as the thing that gave me my life back at least for 10+ years before my next major flare.

I would ask your doc if your perforated area has a chance to heal on the meds without surgery, what amount of scar tissue and narrowing is involved (the more the merrier for surgery option), is postponing surgery a possibility to see if the meds work, is the perforation enough to be concerned about sepsis?

Posted 12/31/2013 5:23 PM (GMT 0)
Wow, for some reason I was reading "perforated bowel" as "stricture"......sheesh, that's what I get for getting on here at 4a while pumping and half asleep! Definitely see a bit more why surgery would be pushed!!! I'm with Habs, those are good questions.
Posted 12/31/2013 5:27 PM (GMT 0)
Seems like my reading comprehension is up the spout as well. Yeah, forget everything that I said: surprised the perforation didn't result in emergency surgery, tbh.
Posted 12/31/2013 8:56 PM (GMT 0)
God I'm so clueless with this whole situation! I was just kind of thinking my perforation would just heal.. It was a small contained perforation apparently. I was feeling good in the hospital due to being on the steroid drip, but since being out I haven't been feeling that great, seems CPR is slowly creeping up as I drop the prednisone. Do you think surgery is really the only option? I am very much stressing out about recovery time (and looking after my 3 month old and 2.5 year old!) and I have also freaked myself out by reading about the myriad of possible complications that come with surgery....
Thanks so much for adding your replies everyone. I have an appointment with the surgeon tomorrow.. Will be interesting to hear what he has to say.
Habs, thanks for those Qs, will definitely be asking those. How long was your recovery time btw and did you have any complications with your surgery?
Posted 1/2/2014 1:18 PM (GMT 0)
OK...for recovery time, you have to remember that my resection was in the midst of a mess...you can't really count on mine....and it was 23 years ago so things are better in the way of care.  I stayed home for two days post my rupture so I poisoned myself.  That lead to a post op abcess....You would have a far better outcome because you are paying attention and getting care early.

I had my resection the full blown open the gut (they thought it was a ruptured appy so that is where my opening was).  Many are able to have laparoscopic now which greatly shortens the recovery time (ask your surgeon if lap is an option!)

I was in the hospital about 1 month - mostly due to recovery after sepsis, NOT the resection.  Then I went back in for a week with the abcess.  Your stay would likely be much shorter...once again, surgeon should give you the amount of days he expects (it is a standard protocol of days post a resection without coplications).

After all was cleaned up, I am surprised how quickly some things went.  I am a slow healer, but the recovery would be even faster if I could have had lap surgery.  Basically for about a month my stomach area was weak and ached (fullsurgery through muscle etc).  My surgery was late August and finally home first week October...I was back at work at a fast food restaurant by January (and I could have done it sooner).

My final point would be...everyone is different.  You let yourself heal at your pace.  Get help...don't try to do any lifting for a while, let friends and family help out.  Enjoy the little one, but kids accept what is reality as normal so let folks help out there too.

Good luck and keep us posted!

Posted 1/2/2014 10:36 PM (GMT 0)
Thanks Habs :)
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