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Crohn's Disease
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Posted 7/4/2011 3:29 AM (GMT 0)
hi everyone..just joined today after searching the internet for answers, so here goes.

i was diagnosed with chron's back in 1999. i'm 21 years old now and have been thusfar very lucky. i've never has a fissure, only relapsed once when the doctor wanted to try easing me to a lesser dose of medication (apparently he was curious since i had been doing so well?) and don't experience too much pain..i'm on sulfasalazine 500mg 4 times a day (when i remember, i've always been bad about it..) and for the most part, lead a normal life.

what i suffer from most is the "other" side effects such as dry skin and IBS when i get too stressed or eat certain things like pizza (i think it's the tomato sauce or just the grease)

i'm not sure if it's related to my chron's, but as long as i can remember i've been very worried. i've been obsessively fearful of death since i could grasp the concept..i was probably 6. i was diagnosed at 9, and the anxiety just skyrocketed. i suffer "white coat syndrome" and have to mentally coax myself out of anxiety attacks when i go to my GI doctor. most likely because during my diagnosis (which was terrifying, an already skittish child being hauled off to a hospital, known to myself as the place where people go to die) was rough. during my initial colonoscopy the nurses could barely get my IV in, i was so tiny. then i actually woke up in the middle of the procedure! i suppose this is where my obsessive fear in that sense derives from. i also suffer hypochondriasis, every so often i go for months being afraid of absolutely EVERYTHING.

after getting settled on medication and getting into remission, i've been basically fine. a little iron defecient and the like, but nothing extreme thank goodness.

when i turned 18 and was no longer being treated at the children's hospital, i got a new doctor. after being told that after 10 years diagnosis that i would have to be screened by colonoscopy for colon and rectal cancer (which i never knew i was at higher, even slightly, risk for) i feel my anxiety concerning my chron's has reached an all time high. being as mild of a case as i have been, i never thought about things like this. due to lack of necessity and precaution..i tend to try and be slightly ignorant as to save myself the panic attacks coming from knowing too much. now every time i'm not distracted or focused on other things i find myself freaking out about what ifs. surgery, cancer, treatment of said cancer, death, hospitalization and it gets in the way of my life. i don't really know who to talk to about these things, my parents just don't seem to take my mental instability seriously and tell me not to worry.

now. my question is this. has anyone ever felt like they have..i suppose a pressure type feeling in the lower back/ rectum? i'm not sure if that's what it is..i've been having aches in my lower back and tailbone, but i feel like i can't pinpoint where it's coming from since there's so many muscles and nerve endings in that area. i also started a desk job a few months ago. long hours, long drive. i've been noticing the discomfort, not PAIN, when i sit in chairs or my car.

what sent me over the edge of paranoia was a random sharp, quick pain in the rectum that i'll randomly have from time to time. i know people get these "zaps" when they deal with anxiety issues, so i'm here freaking out for maybe no reason? it doesn't hurt to pass gas or a bowel movement, though my digestive track has been out of whack lately (i've been on a LOT of antibiotics after wisdom tooth surgery. after surgery, then two weeks later got an infection, then ANOTHER from improper healing. i'm on anti's AGAIN as i type..)

basically, as a patient who hasn't had any issues in the past, i'm wondering if i need to be concerned or if this is just all from me worrying myself sick. i took a hot bath the other night to ease my aches and felt much better. this phenomenon has happened before and went away..i'm thinking it's all in my head :(

i'm so sorry for blabbing on like this. i've just been driving myself insane lately! i've been in a bad cycle of anxiousness and paranoia lately :( confused
Posted 7/4/2011 4:26 AM (GMT 0)
So lower back, tailbone and rectum are not in the same place, KWIM? Lower back arthritis is linked to Crohn's, so perhaps if you are having pain around your hips, gluteal muscles, etc., it is time to see a rheumatologist to talk about what might be going on with your joints. I take sulfasalazine also; it was prescribed to me because of joint pain that I was having linked to my IBD, and it has really helped.

Personally, I like having information and find that knowing what's going on inside my body helps me be less anxious. Everyone's different, though, so YMMV.
Posted 7/4/2011 2:42 PM (GMT 0)
First off I want you to know that having Crohns is NOT a death sentence. In fact death due to Crohns Disease is quite rare. Are you on any meds for your anxiety. I use Xanax as needed for my anxious days. Hugs and welcome to the forum.
Posted 7/4/2011 3:26 PM (GMT 0)
hugs hugs and more hugs!!!! Glad you found us..Lots of us tend to panic..I know i do. I have managed to "calm" myself down now , but once in a while a have a full out panic attack. The joys of being us..
Posted 7/5/2011 4:36 AM (GMT 0)
Yeah, I'm thinking it's more of a joint thing that I'm dealing with, the discomfort (it's not PAINFUL, really..) seems to be at the tailbone and surrounding muscles. My knees have been aching more frequently (they usually ahe when i'm on my cycle, but that's been over about a week, so..idk) I tend to tense my muscles a lot without really realizing when I have these anxious periods. I think my biggest issue is really anxiety control. I have none lol!

I'm not currently on anything for anxiety because I've never been to a doctor to talk about it..my family never took my hypochondria seriously when I was younger, and was honestly just afraid to ask. During my last colonoscopy (november 2009, I'm due for one in august/September) when I was being prepped with the heart monitors and such I had a full on anxiety attack so bad they unhooked my heart monitor and gave me..something in my iV. Valium maybe?

I honestly think it's simple (well I suppose arthritis isn't simple..better than all the nonsense I was thinking!!) things that I shouldn't freak out over, but not having control over my anxiety about everything makes everythig feel worse than it probably is..when I think about it, my lower back hurts probably more than normal 21 year olds..I'll look into that during my next visit and see what doc has to say.

Sorry again for such a wall of text! I don't know why I waited so long to join something like this! I didn't mean to go all out like that in my introduction post but I was definitely having one of my bad nights. I normally confide with my boyfriend when I'm feeling anxious (I almost ALWAYS feel 100% better..I guess this really is all in my head!) but as we are long distance (military, stationed overseas) we can't always talk and when we do, not long.

So anyway. Thanks for replying everyone. :) hope everyone's feeling okay!
Posted 7/5/2011 3:55 PM (GMT 0)
Hey missbrightside, I'm glad you posted and a "wall of text" is how I generally do things here, too. ;-)

The kind of arthritis that a lot of IBD people have is just "enteritis arthritis," meaning joint disease related to the bowel disease.  They're not treated separately, at least not in my experience.  I think the general opinion is that if your joints are hurting your bowel inflammation is not controlled well.  My joint pain was totally connected to my menstrual cycle, too, which fact no one on my medical team really seemed to care about. 

Once I asked my rheumatologist if taking estrogen would help relieve my pain.  He laughed and said as a husband he thinks giving wives extra estrogen is always going to relieve pain (husband's or wife's??), but as a doctor he could not ethically do it.

The sulfasalazine truly helped my hands and knees.  My sacroiliac pain and arthritis comes and goes and I think the sulfasalazine helped that, too, but that's harder to tell.  The arthritic changes in my sacroiliac joint have caused other problems (primarily a chronic hamstring injury) so it's all kind of a mess.  In any case, the arthritic changes in my SI joint happened over a very long period of time and only became truly problematic in my 40s.   I used to jog for fitness and I had to learn some pretty specific strengthening and stretching exercises to protect my SI and lower back in order to keep jogging.  Since the hamstring injury 4? years ago I have not been able to jog more than a half mile at a time. :-(

Talk to your DR about seeing a rheumatologist, or refer yourself to one to talk about the joint involvement.  And start doing some reading about lower back pain because there's no time like the present to modify your activities and posture, etc. to support your back!

Posted 7/5/2011 4:05 PM (GMT 0)
what i suffer from most is the "other" side effects such as dry skin and IBS when i get too stressed or eat certain things like pizza (i think it's the tomato sauce or just the grease)

Pizza is also made with high gluten flour. It would not hurt to try avoiding gluten foods made from wheat and barley for a week or two and see if there is any improvement. Many with gastro problems are sensitive to gluten.
Posted 7/6/2011 5:06 PM (GMT 0)
Kaz: good to know I'm not alone there! Haha I tend to type A LOT!

I've been on sulfasalazine through the entirety if my diagnosis (roughly 12 years) but lately with a new and hectic schedule I sometimes get behind and miss a dose (I know! I know..shame on me :( ) which probably explains why this is just of late. That or I might need to up my dosage a bit, I've been on a pretty low dosage as my case has been quite mild through it's entirety (knock on wood!)

Or..I should exercise more. Had been doing well on that end, cycling most every day. I had surgery last month (wisdom teeth) and had a slightly rough recovery (kept getting infections :( so many antibiotics did a number on my stomach/digestive track..now that I think on it I had been just fine before all that! I suppose I'm just a bit out of whack these days..) and really just been sluggish and plain unmotivated. Not to mention the constant bouts of anxiety I seem to be having over the last couple weeks.

In the woods: you may very well be right on that. Most wheat/gluten doesn't bother me, I suppose maybe the heavier items are what affect me moreso. I try to avoid things like that when I can. I see you're doing things the natural way! How's that going for you?

Thanks for your replies everyone. I think my biggest issue of all is dealing with the times where my anxiety gets out of hand and every tiny thing sets me into panic mode. It's hard to talk about with most people in my life because really, it's hard to grasp, let alone help if you've never been there. I know I'm not as sick as many inflicted with this disease, which is what kept me from attempting to join any type of support group. But where I don't suffer in body I definitely make up for in mind, which I apparently displayed the other night in my frantic post!

So again, thanks :)
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