Just wanted to introduce myself.

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mom-who-hurts
Regular Member


Date Joined Mar 2010
Total Posts : 28
   Posted 3/18/2010 9:24 AM (GMT -7)   
Hi all.  I have been reading posts on this board for a couple of weeks now for informational purposes, and have had a couple occasions of wanting to reply, or ask further questions, so I thought it was time to register and introduce myself.
 
I'm a 36 year old mother of three young kiddo's.  Currently being tested for IBD, but not finished and probably not even close to a diagnosis (based on how long it seems most here had to wait for answers).  I'm still struggling with going back and forth between "it's nothing" to "im dying"  (kind of extreme..I know..)  But for the last 9 months or so I have had a nagging feeling that something isn't right.
 
My history and current issues:  I was diagnosed approx 15 years ago with IBS-had about 5 years of horrible pain/constipation from it, which included several trips to the ER.  Around my late 20's to about a year ago, (when I was pregnant and having babies-which seemed like all the time..lol.) I didn't have much pain or bowel problems at all.  It was so nice, and just when I was probably starting to take it all for granted, things took a wierd turn about a year and half ago.  Lot of abdominal pain/cramping/and occasional diarrhea-seemed to wax/wane with my periods so I assumed "female" issues.  And I did happen to have a polyp and some bleeding issues there so I had an endometrial ablation in hopes to solve all my problems.  This took care of the bleeding, but not the pain.  about a year ago I started having D ALL the time.  Several times a day and on occasion up to 8 or more times a day. (lost about 15 lbs in a very short amount of time-weight I didn't need to lose) Lots of associated cramping and abdominal pain (low right pain-even thought I was having appendicitis a couple times and have had two ER trips, where they just did ultrasound to rule out cyst/appendix and sent me home on pain meds.)  While all this is going on, about the same time (1.5 years ago) I started to have problems with a sore on my backside, close to anal opening.  It would go thru cycles of pain, bleeding and draining, and then calm down, and then a few weeks later start up again.  (in the fall of 2009 I saw a colo-rectal surgeon, was diagnosed with anal fistula and had fistulectomy-to my new GI doc's dismay, the surgeon never said anything to me about looking further into this)  The recovery took forever.  Surgery was Oct and my most recent f/u with the surgeon was less than a month ago, and it was still not 100%-but pretty close, finally.  I had to have another procedure mid-recovery because it closed too soon.  By Dec/Jan this year, I started feeling so cruddy-having mouth sores/ulcers all the time, swollen glands, body aches, low grade fevers, and strange skin problems etc...that end of January, after researching docs in the area, finally found myself a good internal med doc to go over it all.  (this was after my most recent ER visit)  I know I should of done all this much sooner, but I have a two year old with an autoimmune disease that required 100% of my attention for most of the beginning of his life involving several hospitalizations and emergent situations/4 ambulance rides etc.. (not to mention being mom to my other two as well) that I had no time whatsoever to deal with this stuff).  Now that they have diagnosed him and have found good treatment that worked like a charm and he is well, I can deal with these issues.  I was referred to Dermatology, Rheumatology and Gastroenterology with instructions to go to the GI first since that was where they thought the problems originated.  I just saw the GI 2 weeks ago, have had CT enterography, and have a colonoscopy in less than two weeks, and some blood work (still haven't gone to do that yet, but plan to this week...)  We are supposed to meet again when it's all done to go over the results.  I think he is expecting to find Crohn's because when I was talking to him he asked "wait...do you have Crohn's?"  and when I said, no Im here to rule out IBD, he said he'd be frank with me...that they were going on a hunt for Crohn's.  I did end up seeing the Dermatologist in the meantime, and have three different skin issues going on, granuloma's of some sort, psoriasis, and vitiligo/spots.  She has me on topical steroids, but urged to continue with the GI road since it is probably related.
 
Anyway-that's kind of where things stand right now.  Im miserable most mornings and evenings, and usually feel a little better during mid day. I currently don't make plans to be out in the mornings since I'd have to run to the bathroom, and might not make it (which has happened to me a couple of times)  I would love answers that would bring treatment that will help me have more energy and "life" to be the mommy I need to be.  I do have the fear that they won't find anything, and there won't be answers.  But I am also afraid they will find something....so I guess I cannot win in that area.  I do have a very sweet and supportive husband that wants answers as bad as I do.  So blessed to have him alongside me.  We've been thru a lot together.  So trial and challenge is nothing new to our marriage.
 
I know this was incredibly long for an introduction, and I apologize for that.  If you took the time to read it, thank you so much.  I hope it's ok to post here without an official diagnosis.  I think I saw a few others in that boat...?  Any advice, opinions or thoughts on what might be going on, or what I can expect etc...is very welcome.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/18/2010 9:47 AM (GMT -7)   
Hi Mom who hurts and welcome to Healingwell. It sure does sound like you might have Crohns. Especially with the fistulas, granulomas etc. I think at this point you are going to have to be a little patient until they can confirm the diagnosis. From there your GI should be able to tell which meds you will need to be on.

I want to tell you I have had this darn disease for over 30 years. I also want you to know that this will not be a death sentence for you. I have 3 grown daughters (all born after diagnosis), 5 grandbabies, and have been at the same job for over 20 years. I wanted to tell you this so that you can see that there are good times with this disease too. My biggest tip to the newly diagnosed is to always remember that this is a chronic and incurable bowel disease, and must be treated at all times. I am a big proponent of maintainence meds after experiencing some of the bad sides of Crohns because I was not compliant with my meds.

As for diet it is very individual for most of us. I currently live on a low residue diet all the time, as it works best for me. But others have found success with the SCD or Maker's Diets. Most of us find we are low on Vitamin D3 and B12. You might want to ask to have those levels checked. Many of us tend to have more bad bacteria than good in our intestinal tract, so we take Probiotics to put good bacteria back into our intestines. I currently use Primadolphilus Fortify by Natures Way. You can find it at your local health food store. Others have used VSL#3, Align or Culterelle. The probiotics have helped me to have less bm's per day. As for the bad mornings, that is a common occurence for most of us, so you are not alone.

So hopefully, I have answered a few questions. Do stay with us, and ask any and all questions you have. We do care and understand.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

mom-who-hurts
Regular Member


Date Joined Mar 2010
Total Posts : 28
   Posted 3/18/2010 10:10 AM (GMT -7)   
Thank you for the welcome Nanners.  I have the labslip right here for the blood tests they ordered (i really need to get in there and do that...waiting for Spring Break to end so I don't have to drag all the kiddo's in there with me...)  Here are the tests ordered...does this seem like a good start?
 
IgA level; Tissue Transglutaminase IgG/IgA; ANA; Iron, Ferritin, TIBC, Carotene; Iron Saturation; Stool Culture; Stool Giardia antigen (great...looks like I have to collect poop..yuck); Anti-sacharomyces cereviciae Ab IgA, IgG and IgM; CRP; Anti-Gliadin Ab IgG/IgA; pANCA; Folate Level; Chromogranin A level; and vitamin B12.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/18/2010 11:15 AM (GMT -7)   
Yep looks like he is looking for Crohns and checking your Vit D and B12 levels. Do keep us posted on what he says.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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