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Crohn's Disease
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Posted 3/12/2011 6:41 AM (GMT 0)
Hi. For about 10 years I had joint pain, body aches, low grade fevers. My family practioner of 30 years never came up with an answer. I asked to see a rheumatologist, love him! He sent to a gastro, love him too! I now have a team of doctors and I am happy to have a diagnosis. Not happy to have crohns. Really not happy to have the fissure! Ouch! Hoping this cocktail of drugs gets me out of this flare so things calm down and maybe the fissure can have a chance to heal. Today I noticed a fair amount of hair loss, the prednisone has put inches around my already plentiful middle and lots of color to my face. We tried backing off on the prednisone but my joints protested too much. Working to stay positive.
Posted 3/12/2011 4:03 PM (GMT 0)
Hi Seriously and welcome to Healingwell. Sorry for the reason you have to be here though. For the hairloss, you can try adding Biotin into your med mix, that along with the folic acid might help slow it down. As for the pred, it is a med we love to hate. Its one of the fastest meds to quiet the inflammation down, but it does have those yucky side effects. Look forward to hearing more from you. Hugs!
Posted 3/12/2011 6:48 PM (GMT 0)
Hello and Welcome. I think you will do just fine. You have a wonderful attitude. I have been on this roller coaster ride for 23 years officially, 33 unofficially, I know a positive attitude will make a huge difference.
Posted 3/12/2011 9:17 PM (GMT 0)
Thanks for the welcome!
I do understand the love to hate relationship with the prednisone. To be honest I don't think I fully understood what I was getting into with it. I do hope I can try to taper off of it soon! I will try the biotin. Also in all my reading I saw something about something instead of folic acid, I believe it started with an f, hmm I should find that info again. As for the positive attitude, I have this group of women that have been meeting weekly(and more) for 20 years, our kids were in preschool together, they call me annoyingly optimistic. They will be a fantastic amount of support for me, between them and a wonderful husband of 31 years, good insurance and a history of just being plain lucky I will survive this.
I do have a question. Has anyone had fissure surgery and what was that like?
Posted 3/12/2011 9:28 PM (GMT 0)
50% of my hair fell out when I was on prednisone for three months. During that time I grew fuzz-like hair on my face. When I got off the prednisone, my scalp hair grew back. The fuzz-like facial hair lessened but did not entirely go away. That is most likely an age related thing.
Posted 3/12/2011 11:13 PM (GMT 0)
When I was first diagnosed I had laser surgery for fissures and fistulas. At the time, the proctologist thought they were Hemmis, now of course we know. I have never heard of anyone else having anything like that since.

The boards are very quiet on the weekends, so just be patient and someone will be along in the next day or so who has some answers for you. Many of our members have experience with fissures.
Posted 3/12/2011 11:35 PM (GMT 0)
Hi Seriously! You do have a great attitude and I look forward to getting to know you. Could you be talking about "folate" instead of "folic acid?" I get confused between them but I think they do the same thing.

Did you start your prednisone at 20 mg? It doesn't seem like a very high dose. When I had an awful flare a few years ago (including all-over joint pain) my rheumatologist started me at 60 mg and kept me there for a month before tapering. I haven't had to do that again, thank goodness - I take sulfasalazine now to relieve joint pain and it's working well.

Welcome!
Posted 3/13/2011 12:57 AM (GMT 0)
I started at 60mg and was backing off by 5 every week. however when I hit 10 my joints were hurting and my flare was worse so the rheumy put me back on 20mg Today I went back to 15mg I do wish it didn't make me want to eat all day! What goes in must come out and that's just awful!! the gastro says it's a very wide fissure. I'm about to ask for pain meds. I do have vicodin but frankly that just doesn't even touch the pain. Anyone have suggestions for an effective pain med. I don't object to opiates as they don't tend to 'knock me out'.
Posted 3/13/2011 4:37 PM (GMT 0)
Remember steroids actually cause your body to retain a lot of hair while you are on higher dosages and when you taper, that hair starts to fall out (in addition to all the other hair that falls out too.) So while you probably are losing a fair bit of hair, SOME of it might be hair you shoudl have lost a while ago anyway. Though I've had about 1/4 of my hair fall out after my last round of Pred, which is awful because I have waist length hair and don't want to cut/grow it out again! Started taking Biotin and it REALLY, REALLY helps. RiteAid has a great hair/skin/nails formula for healthy hair/skin/nails.

Another thing can be the Pentasa. When I first took that after diagnosis, I lost so much hair I was having bald spots. Eventually my doctor took me off of it and the hair loss stopped after a few weeks.

Hope you feel better with the fissure! Those are AWFUL. Only thing I could really do for those was soft diet to make my stools soft, as most pain meds other then Tylenol knock me out...
Posted 3/13/2011 6:19 PM (GMT 0)
I read more about hair loss and I see it waits until sometimes months after the event that triggered the loss to actually come out. I am going to get some biotin! I also have long hair and am hoping to not cut it. But hey, it is just hair.
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