My dilemma, need your thoughts.

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Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/20/2008 9:29 AM (GMT -7)   
I value this forum and your opinions and will keep this as short as I can. I have been terrible flaring the last week. I took my last Humira shot (4 days earlier than supposed to) the 16th. I was 2 days in lower right quad pain, so I took my Humira earlier to catch it. I saw my GI June 2nd and told him I was still flaring from time to time and maybe go to the weekly shot. He was not recommending that, and said if the Humira doesn't work, then surgery will be imminent. So I said, I wanted this summer to be my one summer that I was not in pain or surgery. I asked for Prednisone in case the Humira wasnt working. Because he will be off in July for holidays, I also needed more Percocets for pain in case. Taking Percocets now, half every 4 hours, and flaring worse every day since.

My husband is hoping for the Humira to work, so am I. Now, this at the point of what would you do. I am alone for a week with 3 dogs, and a cat, new to the community here and dont know many people. Can't risk an obstruction.

1. If I go on Prednisone for the summer, I also have to take high doses of calcium, which is dangerous for me to take as I have had 4 kidney stones and still have a small one in the left kidney. Had Lithotripsy and went through hell and back 3 times. If I dont take calcium, you know the risks involved there and I am 47..shhh.

2. If I stay on Humira I need probably 1 shot a week, been almost 3 months now and not working. (Been on everything, Remicade, Immuran, Methotrexate, Pentasa) just to name a few. I am also taking Flagyl and Cipro and have been on them off and on for 3 years. I think I have to give up the ghost on Humira, was really hoping this was my remisson. In quite a bit of pain.

3. Surgery is the scariest of all. My 2nd surgery was 5 years ago, still never been in remission, and I thought I was litterally dying because I was so sick after and heavily infected and the surgeon didnt believe in antibiotics. I have tried the diet thing, everything, gluten free, no meat, etc. Although he says I am not narrowing.

I dont have an appt with the GI now til Sept, and he goes on holidays soon and I know he wont go with the weekly Humira, even after 10 days instead of biweekly, it is still not settling.

Also my husband goes on Holidays for 6 weeks and if I need surgery he will be home. I am litterally terrified of surgery. I need some advice here, and soon. I would be lost without this forum, as you guys are the ONLY ones who truly know what I am talking about.
 
Penny
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karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 6/20/2008 9:46 AM (GMT -7)   
Penny, I am so sorry the Humira is not working for you!!! I am not an expert cause I have not begun the Humira yet. I wonder if some of the other meds might work for you? the new stuff we keep seeing like LDN or the new meds similar to Humira?

hopefully someone will have more advice for you. I would also want to put off surgery as much as I could but if that is what has to be done I would do it.
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also on Prilosec 2x a day for reflux.

 


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/20/2008 10:25 AM (GMT -7)   
I'm so sorry your not well Penny. I wish I had some advice for you. I have never taken the Humira yet as my Crohn's is not horribly
bad where I need that yet. I just started the Methotrexate this week as I've been dealing with what is a bad flare for me the past month.
But, if it were me and I have tried just about everything out there, which I have almost tried everything, and things still are not good,
I would do surgery. But that's me. If the Humira is not working for you and you have tried everything and things are still not good,
maybe another surgery would do it. But that has to really be your decision. Only you know your body and what your truely going through!!
(((Hugs))))
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
 
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 30mg tapering
                           Methotrexate injection 12wks
                           Folic Acid
                           Wellbutrin
No Surgeries
 


MaggieLou
Regular Member


Date Joined Apr 2008
Total Posts : 31
   Posted 6/20/2008 12:02 PM (GMT -7)   
Penny,

When I started on Humira over a year ago, it took at least 4 months to see improvement. Just hang in there!!

Susie

Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/20/2008 12:51 PM (GMT -7)   
Thank you all for your support.  LbJ: thanks for the hugs, cause I really need it, now that my husband is working for the next week out of town.  Karen: I do know about LDN, but I was trying the recommendations from my GI.  and most doctors are not readily giving out prescriptions for it, some wont even discuss it.  Susie: I have been on it Since Mar 28th, and was told  by Humira it should be subsiding, by now up to 3 months.  The pain is growing worse by the day.. I cant risk an obstruction, the pain is too great, had that many times. 
 
I called the secretary of my GI, and told  her that surgery may be the answer and need to see him Asap.  It is not what I want but I have fought for 5 years to keep in at bay.. The most has been two weeks.  Surgery scares the crap out of me, but I cannot risk the wait and get worse.  Thanks for  your quick replies, I am truely grateful. I have had this disease 30 years, diagnosed 15, 2 surgeries, I dont think there is any other choice.  Waiting to hear from my GI before I go on Prenisone, not sure if they will operate being on it.  Thanks you so much for your input.
Penny

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 6/20/2008 6:16 PM (GMT -7)   
If I were you I would go on a liquid diet for awhile. Give your bowels a rest but still get your nutrients. Make smoothies with protein powder, meal replacement powder, yogurt, bananna, ice, etc. Or get some of the ready made ones at GNC. Eat yogurt or apple sauce and jello and pedialyte. Also broths. I find that when I start to flare a liquid diet for a short time settles it back down. Then if you start feeling better introduce some rice or bread in small amounts. Maybe a little boiled or grilled chicken.

As far as the pets, I don't know where you live but most humane societies have emergency procedures for domestic violence victims and hospitalized people. I used to volunteer at a shelter. If you were hospitalized in an emergency they would send someone to the hospital to get your house key, get your pets, and board them at the shelter while you were in patient. They would do it for free but would of course appreciate a donation. It is not ideal, a lot of animals are nervous and uneasy in the shelter. But where I live they get treated like royalty and it is better than them starving at home. It is better to look into this now, before you wind up alone in an emergency. Go next door and meet your neighbor. Ask him/her for his/her phone number in case of an emergency and leave a spare key hidden somewhere outside. Also, you could check out Craigs list for people that do dog walking and pet sitting services. You could store a few numbers in your purse in case of an emergency.

I'm sorry you are going through this and I hope you get through the week.

Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/20/2008 7:07 PM (GMT -7)   
FitzyK23 said...
If I were you I would go on a liquid diet for awhile. Give your bowels a rest but still get your nutrients. Make smoothies with protein powder, meal replacement powder, yogurt, bananna, ice, etc. Or get some of the ready made ones at GNC. Eat yogurt or apple sauce and jello and pedialyte. Also broths. I find that when I start to flare a liquid diet for a short time settles it back down. Then if you start feeling better introduce some rice or bread in small amounts. Maybe a little boiled or grilled chicken.

As far as the pets, I don't know where you live but most humane societies have emergency procedures for domestic violence victims and hospitalized people. I used to volunteer at a shelter. If you were hospitalized in an emergency they would send someone to the hospital to get your house key, get your pets, and board them at the shelter while you were in patient. They would do it for free but would of course appreciate a donation. It is not ideal, a lot of animals are nervous and uneasy in the shelter. But where I live they get treated like royalty and it is better than them starving at home. It is better to look into this now, before you wind up alone in an emergency. Go next door and meet your neighbor. Ask him/her for his/her phone number in case of an emergency and leave a spare key hidden somewhere outside. Also, you could check out Craigs list for people that do dog walking and pet sitting services. You could store a few numbers in your purse in case of an emergency.

I'm sorry you are going through this and I hope you get through the week.
 
Thanks for the great info Fitzy, I do have some close neighbours, and I know they would help, as they know I am home alone alot.  I have started a liquid diet, hard to do with being on Flagyl as well, mouth tastes terrible.  I need this to settle, hate being on half a percocet, to relieve the pain, since I didnt hear from my GI, I will take the prednisone in the morning.  Thanks for your response, much appreciate it>

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 6/20/2008 7:24 PM (GMT -7)   
oh idea for Flagyl!! I wrapped mine in fruit roll up to make it like it had a gel coating. I don't know if this changes the pills efficacy but it made it taste SO much better.

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 6/20/2008 8:02 PM (GMT -7)   
Penny- I would start the liquid diet ASAP. Try it for 24-36 hours and then start with mush foods. Between the pred & this hopefully you will settle down fast! I hate to say it, but it sounds as though you may be headed for surgery. I would opt the surgery followed by antibiotics any day over another extended course of pred. It's not worth the damage to your bones! We'll all be keeping a check on you...please try and keep your stress levels down too...worrying isn't gonna change the course you are on...only make it worse. (HUG)
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Glucosamine, Multi-Vitamin, Ultracet Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, peri-menopausal.


Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/20/2008 8:20 PM (GMT -7)   
Broomhilda, I hear ya, one of the reasons I dont want to be on it is the side effects, plus I eat everything in site.  My doc didnt want me to go on Prednisone, my choice, I wanted a half decent summer.  But now I am thinking surgery is probably best.  I know the stress is not good, been there too many times.  Really I havent been stressed, at least consciously. 
 
Fitzy, my daughter used to eat fruit roll ups, the thought of me eating that makes me laugh.  Thanks.
 
 
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