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Crohn's Disease Forum » Your Story » A Horrid Return


08-05-2016, 02:36 AM   #1
cireland32600
 
Join Date: Aug 2016
Location: North Carolina
A Horrid Return

So about 2 years ago I was diagnosed with Crohn's at the young age of 14, I'm now 16. In early 2015, I went into complete remission. Everything was going well, I didn't have any pain there for the longest time... Until a few days ago. Now it's back, and it's ANGRY! During the hours of about 9AM to about 10 PM, everything is pretty good, maybe a little dicey, but nothing too bad. And then bedtime rolls around.. Oh boy does it hate that. I eventually fall asleep then BAM, I wake up at 3AM with a knife going through my abdomen. But that's not the worst part... So I'm part of a marching band, so I have to get up pretty early at 6. As soon as my body turns from laying to standing, I fall right back into bed, and the pain paralyses my lower body, and at this point I'm about as useful as a corpse. I've been taking a prescribed medication, I don't remember the exact name, starts with hydro. It's supposed to calm spasms and pain. Yeah. That's a joke. It does NOTHING! So this disease keeps holding me down from having any kind of social interaction, it's leaving me with scarring pains, and it's just overall effecting my well being. So I'm writing this at 3:30 AM, and I am seriously dreading 6. And I'm in some pretty bad pains now. So any kind of support and remedies would be appreciated. I don't need another relapse of 2014.

THANKS!!

Chris Ireland

Last edited by cireland32600; 08-05-2016 at 03:24 AM.
08-05-2016, 05:12 AM   #2
ronroush7
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Welcome, Chris. Tell your doctor what is going on. He will probably want to put you on something stronger. Let us know how you are getting along.
08-05-2016, 08:54 AM   #3
Clash
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Is the anti-spasmotic med you are on hyoscyamine(brand name levsin)?

It doesn't really treat CD just is supposed to help with spams. It's more effective for say IBS than IBD, like Crohn's.

Are you on any meds for CD, like 6mp, imuran, methotrexate, remicade, humira etc? I would keep your GI informed of your symptoms as it seems you need a med to get your CD under control. Lingering inflammation can cause permanent damage.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
08-05-2016, 08:54 AM   #4
eleanor_rigby
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Location: Cheshire, England, United Kingdom

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Have you had any tests recently - blood tests / stool sample / colonoscopy / imaging??
__________________


History:
2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Diagnosis:
Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

Meds:
50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet
08-05-2016, 09:55 AM   #5
hcrum87hc
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It definitely sounds like you need to get on some sufficient maintenance meds. These are usually good to be on, even when asymptomatic. You may also want to head to the ER if your pain doesn't subside. You described the pain as a knife going through your abdomen. You want to make sure it's not something else going on.
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Blessed is he who trusts in the Lord, whose confidence is in Him. Jeremiah 17:7.

Officially diagnosed with Crohn's Disease in June, 2014 2 weeks before 27th birthday after ER visit due to partial blockage (stricture).

Current Meds:
Humira-40 mg every other week
Imuran-150 mg/day

Surgeries: Ileocecectomy 7/13/16 removed 60cm of small intestines.

Status: All inflamed and strictured intestines removed. All remaining intestines are currently healthy.
08-05-2016, 10:41 AM   #6
JackG
 
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Welcome, cireland32600. A lot of us here (I'm pretty new to this forum, too) will tell you that Crohn's is a hard condition to have, but you can live with it.

The key things are:

1. don't go into denial. See your GI a couple times a year and be open and truthful with him. I went undiagnosed six months, lost a lot of weight and developed an abscess requiring surgery. Docs are much better informed about it now. But know that you can get through anything, and the earlier the better.

2. Take your meds religiously and you will avoid a lot of trouble.

3. You'll know after a while if the meds aren't working. Don't suffer too long; call your GI back. He/she has a variety of steps they can take.

4. You have this huge, international Crohn's support board. It's amazing how much help and comfort you get from knowing others with the same problem. You can discuss any problems, even embarrassing ones, because we all have the same thing.

I've been lucky, worked full time, golfed a lot, and raised two daughters. On the other hand, I've gradually learned to stay away from dairy, most raw veggies, and now even coffee. Losing ice cream and coffee seems like too much, but all of us find those limits.
__________________
Diagnosed 1982
Ileostomy and reconnect
Meds over the years: Sulfasalazine, Pentasa, Prednisone, Entocort, Azathioprine (allergic reaction)
Present: Humira
08-05-2016, 10:52 AM   #7
ronroush7
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Amen

10-14-2016, 12:08 PM   #8
cireland32600
 
Join Date: Aug 2016
Location: North Carolina
Hey everyone. Thanks for the feedback. So I had a colonoscopy/endoscopy done. They found a lot more than I bargained for. I have Superior Mesenteric Artery Syndrome (SMAS), gastritis, lactose-intolerance, and severe constipation. Sooooooo... yeah..... That's what's going on.
10-14-2016, 12:38 PM   #9
ronroush7
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I am glad you got a diagnosis but sorry for all you have.

10-20-2016, 11:04 PM   #10
MizzSarah
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So about 2 years ago I was diagnosed with Crohn's at the young age of 14, I'm now 16. In early 2015, I went into complete remission. Everything was going well, I didn't have any pain there for the longest time... Until a few days ago. Now it's back, and it's ANGRY! During the hours of about 9AM to about 10 PM, everything is pretty good, maybe a little dicey, but nothing too bad. And then bedtime rolls around.. Oh boy does it hate that. I eventually fall asleep then BAM, I wake up at 3AM with a knife going through my abdomen. But that's not the worst part... So I'm part of a marching band, so I have to get up pretty early at 6. As soon as my body turns from laying to standing, I fall right back into bed, and the pain paralyses my lower body, and at this point I'm about as useful as a corpse. I've been taking a prescribed medication, I don't remember the exact name, starts with hydro. It's supposed to calm spasms and pain. Yeah. That's a joke. It does NOTHING! So this disease keeps holding me down from having any kind of social interaction, it's leaving me with scarring pains, and it's just overall effecting my well being. So I'm writing this at 3:30 AM, and I am seriously dreading 6. And I'm in some pretty bad pains now. So any kind of support and remedies would be appreciated. I don't need another relapse of 2014.

THANKS!!

Chris Ireland

Sounds very similar to what my body does. I have severe spasms that just happen at random. Most notibly in my legs and my arms. Almost like my body is seizing. I spent 7 years prior to my diagnosis dealing with spasms and a lot of other scary symptoms. I was put on muscle spasm Meds that supposedly treat both that and pain. Never worked obviously. Had every test under the sun trying to figure out what was causing the spasms and other things. Everything came back normal.

Now I take nothing for them and they still happen. More so when I'm flaring or my joints are acting up.

Definitely tell your GP that you want to be referred for perhaps a test to see if your nerves are misfiring. Pretty sure you need to be referred to a specialst(forgot their name) not an intrusive test at all but it would be good to rule out any abnormalities..
02-16-2017, 10:43 PM   #11
cireland32600
 
Join Date: Aug 2016
Location: North Carolina
Hello again everybody. So it's been about 4 months now since the diagnosis of SMA Syndrome. I haven't been able to see the doctor much after that since life is fairly busy, you know, being a teen and all, but the symptoms are still very much there and worsening. Happens usually when I wake up, as I'm going to bed, and digestion. But now I've been noticing a very distinct throbbing in my small intestine area. Now is this a normal thing to have w/ Crohns / SMA, or should I be worried? The worse the pain the more distinct the throbbing. So I'm going to leave that question for you guys reading this to see if I need any kind of immediate care. THANKS!!
02-17-2017, 12:24 AM   #12
GI Jane
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There the spasmodic isn't work definitely talk to your doctor. It took three different ones for me to find one that semi works for me. Sucks getting this so young. Thoughts and prayers.
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