Flaring and Frustrated

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princessjo
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted Today 5:34 PM (GMT -7)   
Hi All,

It's been a while!

I had my resection surgery a year ago now: and had about 1 foot of bowel removed (mostly small intestine, but some large). Results were that I had some cellular changes in the intestine (could have led to cancer down the track) and I had so much inflammation/scar tissue that the intestines had formed a ball. I was told this should give me approximately 2-5 years flare free.

It was not to be so: barely six months after the surgery I began to flare again! Currently, my inflammation levels are 36 when they should be somewhere in the vicinity of 0-6. And the surgery has created a new set of problems for me: I have (a year on) a fairly constant pins and needles sensation at the scar site (I had the full cut down the centre of the stomach) as well as a tightness sensation/tenderness present. The reflux, D, and nausea isn't helping either. I am still waiting to get into the specialist, as I am going public this time around (I am in Australia)....my GP put me on pentasa for the time being, but it isn't really helping.

And at age 21, I am beginning to have joint issues, particularly in my knees. I saw my mother live with early onset (at age 33) arthritis and I don't want that life for myself. In short, I am terrified.

Stories, hope is what I am looking for. Please, please can someone tell me it is not all in my head!!!

Jo
Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies.  ~Erich Fromm
 
discussing Crohn's Disease, infertility, fostering, fundamentalists, my family, and my babies with fur :)!


skofbengsk
Regular Member


Date Joined Oct 2006
Total Posts : 234
   Posted 12/5/2009 6:57 AM (GMT -7)   
Sorry about your flare, I have not had any surgeries thankfully. I have been looking into Boswellia lately and it apparently is mostly used for Arthritis but studies in Germany have shown promise in crohns disease also. Noone on here has tried it for crohns but I am going to give it a shot. Maybe you should look into it yoursef, or ask your Dr about it. My GI pesonally doesn't want to talk about anything alternative just meds so I am on my own. I put up a post on here about it a few days ago, I would love to hear your thoughts about it if you decide to look into it.
Best of luck
Dx CD Oct '06 mom of 3 boys
Current meds: prednisone, Lialda, probiotics, oregano, green tea, vitamins, Fish oil, Past Meds:Asacol, entocort, flagyl, cipro


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/5/2009 8:32 AM (GMT -7)   
Princess after your resection were you put on any maintainence meds? The reason I ask is after my first resection the doctor I had at the time (fired) told me that I no longer needed maintainence meds. So of course, I didn't take any and ended up with another resection 3 years later.   So you should always be on some type of maintainence med.  Remember this is a chronic and incurable disease and must be treated at all times.

As for the acid reflux, nausea etc that is what I felt too before I saw the GI again before the 2nd resection. Now I don't want you to think because you are flaring again it means another surgery, it could be you can be treated with the right meds and get things back under control again. Also, surgery changes how you digest things afterwards. I have had to make alot of changes since my resections. I have had to change to a low residue diet and stay on it. I also take probiotics daily now, B12 shots bi weekly, and I have also got some relief from my joint issues with taking 2000 units of extra Vitamin D. My Crohns is maintained solely with Asacol. The arthritic pains are common when you are flaring, so hopefully once they get your flare under control, hopefully the arthritis will improve too. You might ask for a referral to a Rheumatologist to discuss the joint issues. The meds they use for Crohns and joint issues is usually the same.

Hope your new doc gets your Crohns back under control and get you feeling better soon.

Hugs
Gail*Nanners*


Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

princessjo
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 12/5/2009 6:09 PM (GMT -7)   
Yes I was put on Pentasa after surgery: although I am the first one to freely admit that I didn't keep up with the schedule! To be honest, I was feeling fantastic and just didn't renew my prescription (this was about 1/2 months after surgery and was in between Docs: I flared about 6 months after and went back on Pentasa then). I also have a tendency to forget to take meds: so this disease really sucks for me. And I have tried everything to remember: pill boxes, taking them at specific times etc. I just can't remember to take them! Ugh! Predisone is really not a good med for me either, as it exacerbates my panic disorder/OCD/PTSD/depression. Last time I was on it, I felt horrible and still feel the downsides/side effects aren't worth it, particularly when it wasn't really effective in my case!

So I guess you can say I am partially responsible for my flare. But the joint pain is only something that has happened in the last flare: so that is of particular concern to me!

Jo
Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies.  ~Erich Fromm
 
discussing Crohn's Disease, infertility, fostering, fundamentalists, my family, and my babies with fur :)!


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 12/6/2009 3:19 PM (GMT -7)   
I just skimmed this but I think it would be a good idea for you to research and start foods, supplements and vitamins that have a GOOD indication of helping ward off and treat arthritis and joint pain. You might find some diet info at http://coolinginflammation.blogspot.com/

I also have trouble remembering to take my meds princess. So you will just have to buck-up focus and do the best you can. Sometimes setting the cell phone alarm helps me.
I use FD&C Blue dye number 1 and it really seems to help me.  There is SCIENCE behind this.  Just ask me and I will explain it to you.  U/C and Crohn's for 34 years.  Blue dye for one month and I am feeling pretty good!  I am so excited by this but I need others to try it with their doctor's permission.  Simple food coloring!!  BLUE1.  
I can't make money on this, it's already in your kitchen.  I just want to help.
I do 2 drops in 6 ounces of water when I get up, 2 or 3 drops in 16 or 20 ounces of water that I sip all day and then 2 drops in 6 ounces of water at bedtime.   Max of 7 drops a day.  Give it about ten days.  I am NOT a healthcare professional.   Ask your doctor if this is safe for you. 


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 12/6/2009 5:37 PM (GMT -7)   
princessjo,
Looks like you need a trigger that makes you remember to take your meds.
I take my meds when I grab my keys, to go to work in the am.I then take
my second dose when I go to bed.If I'm having a bad day I take an extra dose
when I get home from work. Setting the phone alarm is a great idea.
I never either remembered,or wanted to take my meds when I was young,
and I regret my decision.
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Fluconazole.More over the counter vitamin-D. Remission since surgery and 5-years, of 8-week Remicade.
.


princessjo
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 12/7/2009 8:39 AM (GMT -7)   
CrazyColitis, thankyou! It is terrifying facing the enormity of this alone. Don't get me wrong, people do support me, but they struggle to relate in any meaningful way to it. It is equally frustrating when they try to compare cases with other people (and in the process mix up diseases: eg IBD) and inform me that I should try this or that, when in many cases it is something I have tried, or for various reasons, doesn't suit my lifestyle or other problems (prime example is Predisone and the impact that has on my mental health).

FunGuy, whilst I appreciate your ideas (and trust me I do: I will try the mobile phone idea), please don't tell me to "buck-up". Don't you think I am truly doing the best I can? I am 21, and yet live with the body of someone much older. My husband and I live with infertility. I live with a brain which won't stop and consistently doesn't allow me to live my life without panic, obsessiveness or fear. I do the best I can with what I have. I came looking for some reassurances and got told to "buck up". Ugh.

Jo
Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies.  ~Erich Fromm
 
discussing Crohn's Disease, infertility, fostering, fundamentalists, my family, and my babies with fur :)!


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/7/2009 8:48 AM (GMT -7)   
Hey PrincessJo, I take the the sister med (to Pentasa) Asacol. When first prescribed it was 3 times a day. I had the hardest time remembering to take the mid day dose. So I asked my GI if I could take it twice a day. So now instead of taking 2 pills 3 times a day, I take 3 pills 2 times a day. Let me tell you that helped immensley to get me to take my meds regularly. Hope that helps a little.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 12/7/2009 7:34 PM (GMT -7)   
Princess: Buck-Up was meant to inspire you like a trainer yelling at you. YOU CAN DO IT MOVE YOUR BUTT! Sorry that you took it wrong (or I phrased it wrong). Being ADD myself I feel where you are coming from and sometimes use a bit of sort of anger to help me improve.
I hope the daily cell-phone alarm helps you. Do check that website. There is stuff there to help you eat more healthy.

Maybe I am not such a FunGuy after all :(

Post Edited (FunGuy) : 12/7/2009 7:39:33 PM (GMT-7)

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