Crohn's Disease Forum » Your Story » What Doesnt Kill You Makes You Stronger


05-19-2014, 08:26 PM   #1
kynative22
 
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What Doesnt Kill You Makes You Stronger

Hey Everyone!!!
I just registered on this site today, and I'm so looking forward to getting to know some of you amazing folks!!
My name is Amberley, I am 22 years old, and from Northern Kentucky..
In March 2011 my boyfriend and I went on vacation to Gatlinburg for a weekend trip. During our stay I began having cramps and just blew it off as that time of the month! When we arrived home the cramping was getting worse, so I diagnosed myself with food poisoning... (If only I had gotten that lucky!!)
After about a week I could no longer handle the pain, and took a trip to the ER. After a ton of tests they diagnosed me with Pancreatitis... I spent 2 weeks in the hospital and was sent home on antibiotics.. I continued to feel ill, weak, and was loosing weight rapidly! By September I began getting worse, and noticed blood in my stool. The doctors just kept putting it off on a stomach virus and the blood was coming from external hemorrhoids. Come end of September I woke to unbelievable pain in my stomach and ran to the bathroom. Unfortunately I was home alone with my boyfriend at work! I just remember sitting on the toilet and having what I thought was a bowel movement and feeling nauseous, very faint, sweating, and my ears began ringing! By the time I was finished and cleaned myself up I found the toilet filled to the rim with blood clots!! I was so weak that I fell to my knees and crawled back to my living room! It seemed like the longest journey, and honestly I believed I was dying!!! I passed out on the couch and was awaken hours later by my boyfriend who rushed me to the hospital! FINALLY after months of complaining they realized something else was going on and called in a gastro doctor. The performed a colonoscopy and told me I had Crohn's Disease!! I had no knowledge of Crohn's nor a family history! They began treating me with the usual prednisone.. A few weeks later now into November I woke with severe swelling in my rear end!!! I woke my NOW fiancé up in tears!! He barely pushed on my bottom and this bloody water stuff came pouring out of my rectum!! Immediately I felt relief, but was terrified on what was going on with me!!! I went back to sleep despite his efforts of wanting me to go to the hospital.. I was honestly just to embarrassed!!! Yet by that next day with the pain and swelling back I broke the pride and went! Here they discovered I had horseshoe fistulas.. On November 18, 2011 I had 2 drains placed and a seton to help drain the abscesses. I continued to suffer through the fall, and in December I became ill again... After calling the doctor they said I was just having a flare and to take it easy.. They called in more prednisone, cipro, and flagyl... One morning I woke just after my fiancé went to work and was cramping again very badly.. I went to the bathroom and once again had lost quite a bit of blood.. I called Andrew but he was unable to leave work so I drove myself to the ER... When I arrived I told the nurse I believed I was having a flare so they began running test. I can remember the doctor coming in and asking me if I was pregnant.. I just said no way I had also been diagnosed with PCOS years ago and never had periods... He did another examination and told me I was having a miscarriage!!!!!!!! I had no idea I was pregnant!! I had had pregnancy test done before my colonoscopy and the fistula surgery!! I had lost tons of weight and began putting it back on due to the prednisone! I was constantly nauseous, cramping, but never contributed it to pregnancy!! They immediately did a emergency DNC, where I found I was 6 months pregnant with a little girl (Madison Elizabeth)
The miscarriage still effects me to this day, and still seems so surreal!! Not only did this disease take my self esteem, my life, but my first child!
I took a hard crash after the loss.. The pain was so terrible!! I was severely anemic and going for constant blood transfusions.. I was unable to dress myself, walk alone, bathe my self... It was the most difficult time of my life! By April 2012 my Colorectal doctor decided that he would remove my drain tubes but leave the seton to see if the fistulas would begin to heal.. By this time I had been on Humira for a couple months and was slowly improving.. I could somewhat function 3 out of 7 days a week... In 2012 alone I was hospitalized a total of 294 days due to flares, one allergic reaction to Imuran which caused Pancreatitis again!! October 2012 I discharged myself from the hospital so I could marry the man who has fought this terrible fight with me! I literally left early that morning, got ready for my wedding, had a fairy tale wedding, and was back in the ER 2 days later!! Pretty pathetic!! But I wasn't going to let Crohn's take away my Wedding day!!!
So here we are... April 2014.. I have been hospitalized more times than I can count! Humira worked until about March 2013 and I was switched to Remicade.. Since October 2013 I have been getting severe joint pain, swelling, rash, fevers, nausea... The doctors keep pushing it under the rug!! I literally haven't been able to walk without a walker for 5 months! I have severe pain in my shoulders, back, knees, jaw, elbows, fingers, wrists!! And EXTREME swelling!! Also the fistulas which haven't healed at all are begin to abscess and rupture new tunnels!!! I am unable to even turn a door knob.. I recently saw a Rheumatologist who told me it was just Crohn's Arthritis and Fibro Myalgia (which I've had since I was 10)
After his BS diagnosis and a Lupus scare!! I did my own research and found Serum Sickness and presented it to my gastro last week.. And he agrees with me!! The issues seem to all becoming from a severe reaction to the REMICADE!! He wants me to try cimzia next which I told him I didn't want anymore drugs until the remicade is out of my system!
Id appreciate any input on serum sickness if anyone has any!! Because I am absolutely immobile and MISERABLE!! I cant do anything!! It feels like every bone in my body is broken!! I am on naproxen and cipro but its really not helping!!!

I feel for you all struggling from Crohn's!! One day we WILL find a cure!! Keep fighting my chronies!!!
05-19-2014, 09:06 PM   #2
DJW
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Hi and welcome. Sorry, my phone is about to die so I need to feel it short.
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05-20-2014, 12:08 AM   #3
Jms88
 
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As far as your medications go I am curious when you started Cipro in relation to all your joint pain its a listed potential bad side effect.

You're taking Naproxen which is listed as a NSAID that group of anti-inflammatory drugs are not generally recommended for people with IBD it can cause intestinal issues like increased bleeding.

As for Remicade causing serum sickness this is also a good theory for all the joint pain. I had serum sickness from Cimzia the first time I used it had the worst knee pain for like 2 weeks (treated it with Ibuprophen NSAID yes bad on me I was young). Years later I took Cimzia again had a reaction to it again after a few uses caused me alternating complete numbness and extreme sensitivity for a long time in my leg.

I don't know if your currently on prednisone still or not because that can cause joint issues.

Perianal disease like those fistulas and abscesses are an extreme pain, they are hit or miss if they ever decide to actually heal.

I wish you luck just also keep up your iron count and stay well hydrated since your anemic.
05-20-2014, 06:44 AM   #4
lisadc1
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Welcome to the forum. I am new here as well, and also from Kentucky (Pikeville). So far I haven't had the severity you are describing. So sorry for all you are experiencing! My dr. is in Ashland, and is much more attentive and proactive, sad you had to experience all that! I think I am the one who is in denial and my dr. is the one who is not dismissing any symptoms. I am beginning Remicade soon, just completed the tests to begin and I am terrified, even more so after reading your experience. Keep us updated on your progress!

Crohns, Colitis, Proctitis, Diabetic, Back Problems (from a wreck), & Looking into Fibro.
1st Grade Teacher who is on:

Lialda, Entocort, Folic Acid, Potassium, Bentyl, Lomitil, Canasa Suppositories

and who has been on:

Pentasa, Flagyl, Cipro, Hydrocortisone Enemas, potassium iv
05-20-2014, 06:59 AM   #5
valleysangel92
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Hello, welcome to the forum

I'm sorry to hear you've had such a difficult time and about the loss of your baby, I can't imagine what you went through and I want you to know we are all here to support you whenever you need.

I can understand your caution regarding taking more medications at the moment. I don't know if you are eligible but there is a trial going on at the moment with SSI treatment from QU biologics. Theres a link in my signature to a thread with more information on it, take a look and see if it is something you want to try, it seems to be having good success for a good number of people at the moment and might be just the thing for you.

I'd advise coming of the naproxen too, I know its a good painkiller, but NSAIDs aren't good for people with crohns, especially people with severe disease like yours. They can encourage bleeding and increase ulcers and inflammation in the digestive tract.

You can talk to your GI or GP about better pain control options, I find codine and tramadol good for me, but you have to be careful with codine as it can cause constipation so its best to start on lower doses.
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Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-20-2014, 09:19 AM   #6
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Hi Amberley! Welcome to the site
05-20-2014, 03:52 PM   #7
kynative22
 
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Thanks for all the responses everyone !! As far as the cipro goes I know for certain that doesn't cause my joint pain.. I've been off and on it for the last 4 years mainly for the fistulas. I only take the naproxen if I absolutely can't move.. Tramadol, Tylenol, doesn't help at all!! And I refuse to take narcotic pain meds
I haven't been on prednisone for months but yesterday started them again!! 30 mg this week 20 mg the next and then 10mg for the last week. The prednisone has helped so much just today and I'm finally able to walk today!! I've also been taking salt and aloe hot baths to help clean the toxins out of my body.. I really recommend trying them they work wonders!! I'll be sure to keep everyone posted!! The doctors said the remicade should be mostly out of my system by July 14!! I really hope I can continue to improve with summer knocking!!!
05-20-2014, 07:54 PM   #8
LodgeLady
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Thanks for all the responses everyone !! As far as the cipro goes I know for certain that doesn't cause my joint pain.. I've been off and on it for the last 4 years mainly for the fistulas. I only take the naproxen if I absolutely can't move.. Tramadol, Tylenol, doesn't help at all!! And I refuse to take narcotic pain meds
I haven't been on prednisone for months but yesterday started them again!! 30 mg this week 20 mg the next and then 10mg for the last week. The prednisone has helped so much just today and I'm finally able to walk today!! I've also been taking salt and aloe hot baths to help clean the toxins out of my body.. I really recommend trying them they work wonders!! I'll be sure to keep everyone posted!! The doctors said the remicade should be mostly out of my system by July 14!! I really hope I can continue to improve with summer knocking!!!
Well I suffered long enough that now I don't think twice taking Tylenol with Codine. I try to only take it with severe pain. I got over the phsyce of it long ago.
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