Presently undiagnosed, no story per se, but have questions....

Crohn's Disease Forum

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Sep 3, 2010
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Hi, everyone;

My story's pretty deceptively short, despite this long post. Aside from two small bleeding duodenal ulcers back in November of 2005, I have had no real outstanding GI issues in my life. Well, I did have what I assumed to be a bad case of bacterial dysentery when I was thirteen — hoo-boy, memories — but it's worth mentioning in case it was something else.

My (deceased) dad had a ruptured appendix at around 21-22, and had his first bout with what was then diagnosed as ulcerative colitis about a year later. Mind you, I remember his telling me this when I was pretty young, maybe ten. He said he was laid out on the couch and never wanted to move, was bleeding when he passed stools, and it hurt whenever he ate. He went into remission, but it came back with double force when he was 44 and I was six. I remember getting a glimpse in the hospital of what he was producing, just days before his three-foot large bowel resection. At six, I unabashedly announced (as kids do) that it looked like 'grape jelly'. Needless to say, the entire experience left an impact on me, and I've been aware of my own inherited risk, though to my knowledge no one else has developed IBD on that side of my family.

In case it doesn't show in my info, I'm 28 (29 in October). A week ago I awoke with a sensation throughout my bowels I can't quite explain. Not pain, but very bad discomfort. I passed three to four movements a day, all rather thin (in shape, no consistency) but no diarrhea. Still, that's not normal for me. The pain that has developed is in my lower right—an intermittent burning, aching pain right next to my hip that worsens with sitting. I've asked one doctor so far if they thought appendicitis. It hasn't advanced, so I assume not. It's not excruciating. There is no blood that I can see (I've never had that).

I guess what I really want to ask is what other people have experienced when they first developed IBD. I normally have what I tell people are "guts of steel". Hit me with anything, I'll get over it. I haven't even vomited (knock on wood) since I was four. Yeah, four years old, so twenty-four years no vomiting. These stools are weird, the pain is weird, the extreme fatigue that comes with the bouts of aching pain are very strange for me, and I'm losing a lot of weight. I never lose weight. 122lbs from 135 in about two months, I think? and I'm 5'6½". I have occasional appetite loss but I figured that was my nerves (I'm easily stressed).

Now, the reason I'm inquiring is because I'm on warfarin for factor V Leiden, a condition where I form clots easily and don't break them down readily. The condition saved my life with the ulcers I had in 2005, as I actually healed myself in a couple days from their appearance. But, as you can imagine, if I start bleeding from Crohn's, I'm in a world of danger. Might be worth mentioning I also have very mild hypothyroidism (medicated—TSH 5-6 without it), mitral valve prolapse/regurgitation, and suspected chronic fatigue (FMS, IBS and CFS run in the maternal family).

I'm weighing my chances, here; I don't want to risk the procedures yet, but I also don't want to fool around with this if it means bleeding out. I know no one's qualified to really know here, but any input on personal experiences actually helps me out a lot. It's odd because I was able to diagnose my friend on the spot when he told me his symptoms, something like a week in advance of doctors finding out. But it's so hard to tell with myself without the classic symptoms, and I just want to be very cautious.

I apologize for the long post, and thank you so much to all of you who do respond. Hopefully I can add my two cents here and there as I read, as well. You're all very strong people for going through this!

-Sorb
 
Hi,
I, too, never had any problems until recently. I started having diarrhea last fall and eventually they diagnosed me with Crohn's. Before that I was totally healthy. Other than the diarrhea, my symptoms included crampy abdominal pain, sense of urgency, a rash on my arms, and weight loss. I also had one very bad episode of vomiting for which I was hospitalized (and subsequently diagnosed). I am 31 years old- too old to develop Crohn's I thought. I guess sometimes I still wonder if I really have it (although deep down I think I do). In your case, I think it would be worth checking out, especially since you are on coumadin and at risk of bleeding. A colonoscopy/endoscopy are not that risky and if it means catching it early and starting treatment, it might be worth it. Just my 2 cents. Good luck!
 
Hi Sorb and :welcome:

Wow, you sure have a lot to deal with medically! Crohns is one of those diseases where everyone's symptoms vary, so diagnosis can unfortunately be difficult. Some people bleed and some don't. Some have diarrhoea and some tend to constipation and on it goes. So it's not a given that you will bleed but naturally with being on Warfarin it's something you are going to have to watch closely. The pencil like thin stools may indicate a narrowing in your bowel caused by scarring or active inflammation. Here is a link to a thread about what people's initial symptoms were:

http://www.crohnsforum.com/showthread.php?t=12366

This is great place for support and info and there will be others along that will be able to answer your questions better than me! I hope you stick around, welcome aboard!

Good luck, :)
Dusty
 
Thanks much, Sheezy!

I think 31 is still on the threshold of typical age, isn't it? On the bright side, maybe it means you're still holding on to youth. :D

That's one thing I haven't gotten is diarrhea. It takes a lot for me to get diarrhea. I do get very loose BMs around my period, back when I had it (I'm very irregular unless treated with hormones, but that's common these days). Plenty of nausea off and on, especially in the morning, and that goes in bouts every year or couple years. I know a lot of these symptoms can be concurrent with IBS, though. It's the continuous deep pain in my right hip area that has me shaking my head in confusion.

I'm curious; with no blood, what made them decide on an IBD diagnosis for you?

DustyKat: Awesome, thanks for that thread! That will be good to peruse, for sure.
 
Hi Sorbys - I was diagnosed this year (42 years old) with Crohn's Colitis. I have never had any bleeding whatsoever...but my whole colon was inflamed and biopsies came back with granulomas consistent with Crohn's - I guess I'm lucky that I haven't ever bled...my symptoms were persistent diarrhea and abdominal cramps with an urgency to find a toilet. I had this for years. I was also found to be lactose intolerant as well.

I didnt' lose weight because my Crohn's Colitis is only located in my large bowel and nothing in my small intestines at this stage.

Everyone's symptoms seem to be different. I would go and get myself checked out if I were you and then it will put your mind at ease if it isn't Crohns/Colitis...

Good luck with it all...
 
Hi Sorb, just wanted to say welcome!! My son did bleed! It was two months of blood and D that led to his dx. The extreme fatigue was also an obvious symptom he had and he was ten at the time so it was very obvious. Good luck!! I hope you get the answers you need!!
 
:welcome: Sorby. Dustkat said what I would of said, sounds like narrowing and you probably need a colonoscopy but being on thinners they may not try that route. A small bowel follow through should detect narrowing. That pencil like bowel moments are a dangerous sign for narrowing, which eventually could cause alot more pain and possibly an ER visit. Not everyone bleeds and supposidly Crohns are supposed to be low in the bleeding area but if it is Crohns colitis or Ulcerative colitis then that can happen. Try not to worry because stress aggrivates the gut. My whole family has a some of the Crohns or colitis and it is hereditary.

There is no set age but the 20's are the most popular ages. I had symptoms in my mid teens but the actually severe pain 32. After the birth of my child and a divorce, major stress points.


:hang: hope you get a full diagnosis of your discomforts. Keep a diary of what you eat, lots of food triggers. Again, welcome glad you found us!
 
Hi Sorb
and welcome

short story, dx 5 years ago, got appropriate meds, then massive flare back in Jan after remission for 5 years.
First signs for me were excruciating pain in my lower right and hip, then round to my back. I couldn't stand, sit or move at all really. I ignored this for 6 days! My BMs which are usually D, became long thin strips, then I started vomiting.
I believe this is happening to you too, you are narrowing. My GP got an ambulance and I was told in A&E that it was caught in time, I was about to rupture!
Make that call, or go to A&E asap! keep your eye on your temp too, infection could set in, just like mine did.
good luck, let us know how you get on
lotsa luv
Joan xxx
 
Thanks, all of you! It's sad to hear all the misery people can go through. :( I'll be keeping good thoughts toward you all.

I'm making an appointment tomorrow just to get things started; I'll be asking for a referral to any available GI.

[Warning: more crap-talking ahead] I just want to make it clear I don't have the pencil-thin poops, just multiple smaller, flat ones when it first started. I've had a couple bigger ones since, and though they've been 'loose', they're only once a day, no extreme urgency. What's odd is my best guy friend, with whom I share space, told me his were similar around that time as well, and he, too, had gut pain and gas. It wasn't quite the same, and he doesn't have the lower-right abdominal pain, so that's what I'm worried about now. I'll see what comes up...and out...next, which will be soon.

And as for that pain, it's never gotten worse than a certain point, which is to say not so much terribly bad, but vexing and worrisome. At first it came with a lot of trapped gas in that one area and nowhere else, but now that seems to have diminished quite a bit. I ate a bunch of baked beans before bed (...yeah! Good way to test the waters, as it were), was fine until around three hours ago when I started getting slightly cramping, burning intestines all over and, well, heh, gas. Go figure. Not that bad, just...not that good, either.

It's that tiredness that's really getting me now, but I guess that could be a lot of things, hormonal issues being at the top of the list. That burning, aching, annoying LRQ pain next to my hip keeps on keepin' on, however mild it is. When this all started a week ago, I felt feverish off and on throughout the day whenever the symptoms acted up, but without actually having a fever. My lymph nodes felt swollen and I've been getting mild headaches at night. I live very close to Mexico, so gut ailments are hardly strange to contract here.

Bleh. If anything unfolds with a diagnosis, I will put it here for others in my position to read, as well.
 
Well, the right side pain is still there, waxing and waning throughout the day. It's still tender to the touch. What's odd is, although it gets a little worse just after eating, I don't seem to have any pain during the night and it seems to migrate to the left -- or disappear completely -- after exercise. Sometimes I wake up, push on the spot, and there's no pain at all.

Something significant I noticed is, every time I drink water, especially after I just wake up, I feel like I have to, you know, go. It's not urgent, I can just tell everything starts moving, as if it wasn't before that. I know this is called the "gastrocolic reflex," but it seems significant for IBS. I realize many people don't believe IBS exists, but as I know it, it's an abnormal muscular reaction in the intestines completely unrelated to the immune system or anything inflammatory, but related to FMS. And, well, it seems I'm having abnormal muscular contractions, but I don't know if that could account for the pain in what seems to be the area of my terminal ileum. :(

I have no other symptoms at all except some stiff muscles, more hair loss (warfarin already causes hair loss), weak appetite (it's not totally gone at all) and fatigue, two of those things I've had since I was very little (presumably CFS, mitral valve regurgitation and dysautonomia related). No terrible cramps, nausea, diarrhea, frank constipation or fever. I see my doctor tomorrow to start with the testing, and I'm going to stay realistic.
 
Hey Sorb. I'm in the process of figuring out what's going on with me, and I've been having bad lower right quadrant pain, too. But I've also had D for a month and a half. It comes and goes and aches after I go to the bathroom. I am actually visiting a specialist tomorrow morning.

I saw go with your instinct. See a professional and ask them for their honest opinion on what route you should take. If they suggest a colonoscopy knowing your background and what meds you are on, I would trust their opinion. I hope you get some answers soon!
 
Thanks to you both. Gypsigirl -- are you from Romani descent? I ask because my dad's side as this Crohn's disease and I have something like 12% Romani in me and that coupled with some Jewish background seems to be popular with IBD.

Augh, genes. :(
 
Question

All I had was a simple X-ray to look for gas today, just to kick things off. CT scan and ultrasound will come later, I'm sure. I have to wait a few days to get a real reading on the x-ray, but from what I saw, it was full of gas, especially around the area of my pain and in the descending parts of my colon. Is that a typical thing with Crohn's?

Didn't eat until 3:45 but almost an hour and a half after the pain is a dull ache and gassy on the right again. It's frustrating not knowing what this is. Also, I didn't loose that much weight, about what I'd expect from not eating enough.
 
I'm wrapping this up and just want to thank all of you who've replied and sent messages. This is a fantastic forum, very supportive, and I wish you all the best with good vibes as you push through life with IBD. You have my deepest respect and I will always remember how well my father handled his Crohn's disease.

I'm by no means out of the clear with getting IBD myself, but as it is now, it looks like the only thing I have wrong is gallstones -- gallstones bad enough to show up on a normal x-ray, as a matter of fact. I can't eat without feeling sick, so I can't wait to do something about it. I feel much admiration for those of you who go through the chronic pain of IBD and the complications it brings.

Keep up the good humour and I'll pop in every now and again. And don't forget, YOU'RE ALL PIRATES.:ycool:

:lol:
 

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