I might Have Crohns, and I'm scared

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Tokala
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/10/2009 5:05 AM (GMT -7)   
Good morning everyone
 
BOY am I glad to have found you guys! turn   For several months now I've been struggling with the most horrible (and I've had 3 kids LOL) abdominal pain I've ever had.. because of my spine issues, Ive developed quite a tolerance for pain, but this drops me to the floor- dizzy, sweating, nausea, etc.. I am also losing weight-- ALOT of weight.. I was weighed at my docs yesterday, and in the 3 weeks since I saw him last I have lost another 12 lbs. adding up to over 60 lost in just a few (3-3.5) months.. and this without trying to lose a pound.. at first, I had no issue with the weight loss, as I was overweight, and it was worsening my back pain significantly-- but I have no reservations about saying this is scaring me now.. seeing I'd lost 12 lbs in 3 weeks SCARED ME.. and it scared my doc, too.. He left no gray areas in explaining the seriousness of my symptoms..my body is at a 35,000 (yep, thousand) calorie deficit.. and I WILL be in the hospital soon if something isn't done. My body is not absorbing any calories or nutrition.. thats a scary thing to hear.. I've had bloodwork (all normal) a CT scan (normal, except a small cyst on my left kidney) and an ultrasound (normal, was to make sure cyst wasnt anything to worry about) I kept trying to convince myself it was menopause- as the pain seems to be in the location of my ovaries, but nope.. theyre fine too. I kept trying to convince myself it was anything but serious.. but clearly, I have to stop living in a bubble and deal with this.. I have kids depending on me.. I am scheduled for a colonoscopy on Feb. 18th. and will know more then.
 
I'm sure I'll have lots of questions in the next few days- but for now, is there anything I can do to help my body absorb some of the calories/nutrition I'm not getting? I know of a dietitician in my counselors office and I'll make an appt with her this morning.. maybe she can help
 
Thank you all for being here.. I look forward to getting to know everyone, and learn from you..
 
Chelley
Degenerative Disc Disease of Lumbar spine since 2002, Fusion w/hardware L3-4, L4-5, L5-S1 on 8-11-04, Fibromyalgia, Spinal Stenosis lumbar and cervical.. Possible Crohns (will know more 2-18-09) Chronic depression


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 2/10/2009 5:24 AM (GMT -7)   
I would try Ensure or boost as they are high in calories.Other than that your going in the right direction by having a colonoscopy.
I wish you the best!

Wolfie

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/10/2009 5:29 AM (GMT -7)   
Hi Welcome to Healing Well .Ensure is good cold and helps alot and so is boost. We seem to loose alot of weight at times when we first get sick ,I follow a low residue diet too easy to chew easy to digest foods. Good luck with your scope and glad you are getting checked ..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 2/10/2009 5:57 AM (GMT -7)   
I too suggest Ensure or Boast. If it is Crohn's, an all-liquid diet with these or similar formulas can be better absorbed than regular food and can sometimes induce remission. Just make sure you drink enough bottles per day to get your full calorie requirements so you don't lose more weight.

HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 2/10/2009 7:47 AM (GMT -7)   
I am sorry to hear about your health issues. The colonosopy will really help reassure you one way or the other....you will know more then what is going on with your body and how to handle it.

I have only been dealing with Crohns for a year, however I have to tell you that for myself knowing is the best feeling when dealing with Crohns. It explained so much about how I was feeling physically and emotionally.

Keep everyone here informed please--this board is a Godsend.

35/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Endcort 3mg 2X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/10/2009 7:51 AM (GMT -7)   
So sorry to hear of all the difficulties you are facing. The colonoscopy is good start to see if its Crohns. Be sure to request that your doctor takes biopsies while in there. Sometimes its difficult to see with the eye, but the biopsies will provide more proof. Crohns is usually at its worst when first diagnosed, once you get on the proper meds things will start to quiet down. Please keep us posted on what your scope reveals. And don't hesitate to ask any questions, we are here for you.

Hugs,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Tokala
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/10/2009 9:13 AM (GMT -7)   
Thank you all so very much for the warm welcome, and advice.. I will pick up some ensure today.. I would be alright with maintaining my current weight, but I dont want to lose anymore.. it was said this group is a godsend-- and I couldnt agree more..
 
the other thing that occured to me is.. how on earth will I be able to determine if my symptoms are spine related, fibro related or crohns related?? they all have very similar symptoms .. my doc asked me if I had any new symptoms, and I said no.. because I attributed the recent neck and shoulder pain to being related to the stenosis in my cervical spine worsening.. and the increased pain in my legs and hips to lumbar issues and fibro meds (I take lyrica, which causes your hands and legs to feel and be really swollen) Ive been under a whole lot of stress the last couple of months, and stress most certainly increases fibro symptoms..now I dont know whats what.. but I'm going to try not to worry too much until we know for sure what we're dealing with..
 
since my spine injury, Ive really made diagnosing/treatment a challenge for my docs.. guess they havent "seen anything yet" .. eyes
 
again, BIG thanks to everyone for the support.. I'm having a very down day today..
 
Degenerative Disc Disease of Lumbar spine since 2002, Fusion w/hardware L3-4, L4-5, L5-S1 on 8-11-04, Fibromyalgia, Spinal Stenosis lumbar and cervical.. Possible Crohns (will know more 2-18-09) Chronic depression


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/10/2009 11:47 AM (GMT -7)   
Hopefully the colonoscopy will help you determine what your symptoms are from or maybe eliminate one of the possibilities because having CD sucks...I hope your scope comes out clean and they are able to find what is causing you grief.

Feel better soon :)
My bum is broken....there's a big crack down the middle of it! LOL :)


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 2/11/2009 5:39 AM (GMT -7)   
Chelley -

Hi. Welcome. Sorry for the late reply. Being scared is a normal thing. :) Your symptoms sound like mine when I had both flares that put me in the hospital. I lost 40 pounds in about three weeks, was very nauseous and running to the bathroom (don't know if have the runs, for lack of a better term). Hang in there. You need a good GI doc at a hospital that you like. If you see a doctor and don't like him, get a copy of your records and move on to another one. Keep a copy of ALL your medical records at ALL times... you never know when you will need them.

My advice: Look around this site with ALL your questions. That search box up top is my best friend for any new symptoms, medications a doctors wants to put me on, etc...

Also, start a food diary so that you know what foods your body will not tolerate and those that it will. Don't be concerned about being off food. Be concerned with getting vitamins to supplement all that you are losing.

When I am off foods, and want to test to see if I can eat again, I bake crescents (break). I will nibble a tiny piece off, wait half an hour and if it stayes, I will nibble a little larger piece. If not; I try again the next day. :)

Good luck and keep posting.


-Leslie

Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 2/11/2009 5:40 AM (GMT -7)   
PS: Whatever you do, do NOT get ride of any of the larger-sized clothes you have. keep various sizes of clothes in your closet. Weight is like a roller coster with this DD. :) I keep sizes 8 - 14 in my closet at all times.

Tokala
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/11/2009 6:43 AM (GMT -7)   

Hi everyone,

again, I want to thank you all for such a warm welcome, and for all the suggestions and ideas.. I cant tell you how much I appreciate it.

Id really love to believe theres a chance this isnt CD.. but, after the chat I had with my doc the other day, and the tests hes done that ruled out other possibilities for a cause, I just dont think thats realistic.. I'm honestly still pretty floored..  unable to wrap my head around all this.. I'm one that wants to be educated about whats going on with my body, but in this case, its just upsetting me more to do so right now.. is it normal to feel this way?? To be so angry, sad, scared, and just not knowing what I feel?? I look at my kids and as I think about the obstacles to come, I fight back the tears.. my spine condition has put them through SO much.. its put us all through so much.. I am just so overwhelmed!! Thankfully, I already have a great relationship established with a wonderful counselor whom I see once a week.. so tomorrow, I'll try and get some of this out with her..
 
more specifically, my symptoms start with the horrible abdominal pain and sensation that I need to get to the restroom IMMEDIATELY, but 8 times out of 10, nothing happens..(the other 2 I have awful diarrhea, and its usually just after eating..but sometimes I do get these pains out of the blue when I've not just eaten) the pain is severe enough to leave me feeling nauseaus, dizzy, and often feeling VERY hot and sweating profusely.. and the weight loss, as I mentioned before, is really out of control.. I've lost over 60 lbs in 3 months time.. and I expect I'll lose more before we get any answers sad
 
pb4, while this is a bit OT, I have to say I adore your signature..by nature, I have an exceptionally sarcastic sense of humor.. I once convinced my now 11 year old daughter (she was about 2 at the time) that her bum was broken, too .. poor thing.. LOL She still hasnt let me live that one down.. thanks for the thoughts, well wishes, and support..
 
Leslie, thank you too for everything.. I will most certainly take your advice and keep a food diary, as well as journal when my symptoms occur, and whats going on when they do.. you suggested I keep larger clothes on hand... is it typical for someone with CD to have periods of unexplained weight GAIN as well??  That concerns me only because even a few extra pounds increases my back/leg pain, resulting in needing more meds to control it (which I detest needing to do)
 
I wish everyone well..
 
Blessings,
Chelley
Degenerative Disc Disease of Lumbar spine since 2002, Fusion w/hardware L3-4, L4-5, L5-S1 on 8-11-04, Fibromyalgia, Spinal Stenosis lumbar and cervical.. Possible Crohns (will know more 2-18-09) Chronic depression

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