Does anyone relate to this kind of pain?

[Sorbys]

Ok, guys, I'm back. After what I was told was probably my gallbladder, then (of course) IBS, and then my symptoms suddenly going away one day last October, they've returned with a vengeance.

It could just be IBS, but I have two major risk factors for Crohn's disease: autoimmune thyroiditis, and a dad who had severe Crohn's colitis. I've had occasional gut problems my whole life (the worst being at 13 after a dose of antibiotics), but really nothing major at all, and sometimes far less than other people I know. I do know every time I get long periods of abdominal pain, it's on the right side—that started when I was 20.

Here are my symptoms starting mid February:

- Intermittent aching, pinching, and cramping in my lower right abdomen, just a couple inches right of my navel and just above the top of my hip bone. (Right "iliac fossa".) It often hurts when I move my torso in various ways or when I walk around, and it's unpredictable.

- The pain can completely disappear at random times during the day, but when it's present, it never moves from that spot. It's often worse when I press on the area, but this can completely vary throughout the day from nothing to about 7 on the pain scale. There's gurgling gas on the right side occasionally, and only in that area.

- Bowel movements have become a lot more loose, granulated, floaty, light, and messy; I've had one mild bout of near diarrhea in the last two weeks, but that's it.

Mild possibly related symptoms:

- I had a tiny painful white bump on my tongue when this started, though I chalked it up to eating too many kiwis. It's totally gone now.

- I do get slightly achy in my legs, and have since I was a kid. I thought it was my hypothyroidism.

Symptoms I don't have:

- Mild nightly headaches, but no fever I'm aware of.

- Not more fatigued than I normally am, especially with the weather being poop here lately.

- Appetite is perfectly normal. Probably too good.

- No weight loss.

- No actual nausea. Yet?

Probably my worst accessory symptom is obsessing and fear. I have mitral valve prolapse that will eventually need correction with surgery (I go in for an echocardiogram tomorrow, actually), but that doesn't bother me even half as much as this does. Most of the time I'm almost hoping to just get my valve fixed.

I really appreciate anyone reading this and giving their input. Please note that I understand only a Roto-Rooter exam will prove anything on way or the other, but my decision on how fast to get it looked into is riding on my "watch and wait" technique with these symptoms. If they don't subside in another week, I'm definitely going in either way.

 

[Shake-N-Jake]

Sorb, I am so glad you brought this up because I am wondering the exact reverse as you! I have Crohns! Its supposed to be a mild case but I have so many symptoms that my Doc says couldnt or shouldnt be from the Crohns! A lot of them point to something else! What that is I have no clue but most of the responses keep coming back to me checking my thyroid! I was wondering how you got diagnosed? What were your symptoms? I also keep hearing that just doing the basic thyroid checks arent enough to detect auto-immune thyroiditis or hashimotos? Any help or advice would def be appreciated!

 

[Sorbys]

Sorb, I am so glad you brought this up because I am wondering the exact reverse as you! I have Crohns! Its supposed to be a mild case but I have so many symptoms that my Doc says couldnt or shouldnt be from the Crohns! A lot of them point to something else! What that is I have no clue but most of the responses keep coming back to me checking my thyroid! I was wondering how you got diagnosed? What were your symptoms? I also keep hearing that just doing the basic thyroid checks arent enough to detect auto-immune thyroiditis or hashimotos? Any help or advice would def be appreciated!

I knew I had it years before I was diagnosed. The first time I noticed it was in 2005, when I had a sudden severe attack with all the symptoms to an extreme. I could barely stay awake, it was so bad. I felt cold and it was the middle of July in Houston. It took a couple years after moving to New Mexico before I finally went in and got checked, and my TSH was 3.6 the first time, then eventually 5.5 in a couple months after that. It was just barely above the cut-off line, but I had all the symptoms. I was very cold intolerant, depressed, tired, achy, had very little appetite, felt puffy, gained weight, and my body temperature was always crazy low (down to 95 one morning, which was scary).

Everything I read seems to indicate that thyroid problems are extremely commonly linked to Crohn's disease, more than many other autoimmune disorders. Like one isn't enough, eh? Not only that, but Crohn's can make absorbing the medication much more difficult, an underactive thyroid can cause healing to be much slower in the intestine, and an overactive thyroid can cause more severe cramping and diarrhea. Wonderful.

My dad had Crohn's, but not thyroid problems that anyone was aware. He did suddenly develop type 1 diabetes, but all of his autoimmune complications were chalked up to smoking. Smoking is also terrible for the thyroid, so if you're a smoker that might complicate everything a lot more.

 

[Shake-N-Jake]

Sorb, thanks for the response! Im def not a smoker! Just have all kinds of symptoms! Tell me what you think?

Dry thin hair
Hair loss(no one in family is bald)
Flaky dry scalp
No Energy
Fluctuating fatigue
No Appetite
Cant lose weight
Leg Pains
Anxiety & Irritability
Hands and Feet always cold
Low body temp (around 96.5)
Insomnia
Nausea
Constipation
depression
high blood pressure
heart palpatations
brittle nails
Problems swallowing
sometimes I lack any motivation or drive

Im sure Im leaving out a few but thats a pretty extensive list! Some of my symptoms will come and go! I believe some of my thyroid tests have been ok but there has been no extensive tests done to it! I have heard that you need to do more exensive testing (thyroid antibodies?) if it is auto-immune thyroid problem than your levels can fluctuate! I really need to get to the bottom of this cause I have no idea what else could be causing this! Doc says my Crohns is a very mild case! Somethings gotta give! Only med I take is remicade every 8 weeks! Thanks for your help!!!

 

[Keona]

Hi Sorbys
I wouldnt focus too much on the symptoms you do not have as I find doctors are really only interested in what you do have.. having said that .. a 7 on the pain scale is sort of high?...no? I think if you are in pain, your body is trying to tell you something. Do you have a GI doc? If you are concerned enough to be checking out an online Crohn's forum, perhaps you could get it checked out (or have other things ruled out). Maybe you have already had tests ..you haven't specified... are you male or female? (could be something to do with reproductive organs if female.) Im assuming you are male for some reason ??? (sorry if I am wrong - i haven't read any of your other posts)...
it wouldn't hurt to get it checked out - good luck!

 

[Sorbys]

Dry thin hair
Hair loss(no one in family is bald)
Flaky dry scalp
No Energy
Fluctuating fatigue
No Appetite
Cant lose weight
Leg Pains
Anxiety & Irritability
Hands and Feet always cold
Low body temp (around 96.5)
Insomnia
Nausea
Constipation
depression
high blood pressure
heart palpatations
brittle nails
Problems swallowing
sometimes I lack any motivation or drive

A good doctor will treat you based on symptoms, usually by starting you on a low dose of thyroxine (t4). Only naturally desiccated pig thyroid works for me, unfortunately; being on synthetic t4 only brought down my TSH and raised my T4, but my T3 was still too low.

Bear in mind a lot of people become symptomatic with a TSH 2 and above. I only feel totally right when I'm at .9 to 1. Antibodies present or not, the symptoms could be from the fluctuating, struggling thyroid. Low body temperature is almost diagnostic in itself, especially with everything else you have.

If I were you, I'd push to be put on a low dose (12-25µg) Synthroid/Levothyroxine to see if you feel any better, if your TSH shows "normal". Just keep pushing to get it treated, because it honestly can't hurt. You're already at risk with your IBD.

Hi Sorbys
I wouldnt focus too much on the symptoms you do not have as I find doctors are really only interested in what you do have.. having said that .. a 7 on the pain scale is sort of high?...no? I think if you are in pain, your body is trying to tell you something. Do you have a GI doc? If you are concerned enough to be checking out an online Crohn's forum, perhaps you could get it checked out (or have other things ruled out). Maybe you have already had tests ..you haven't specified... are you male or female? (could be something to do with reproductive organs if female.) Im assuming you are male for some reason ??? (sorry if I am wrong - i haven't read any of your other posts)...
it wouldn't hurt to get it checked out - good luck!

7 is at the very worst, and rarely that. My pain doesn't usually get past 5, it's just far more worrying to me than anything. I can't move around (sit up, stretch, etc.) without feeling it. It's very much like the "side stitch" feeling anyone gets from running for too long, and it's in the same area a lot of the time.

I do have a GI Joe, er, doc, and he's the one that diagnosed me as IBS with simple examination last fall, and didn't seem concerned about my autoimmune tendencies and family history. He did say if I was too worried and dicyclomine didn't help (I haven't tried it, honestly), to come back and consult with him about a "shishkebab". Yeah, going to try to avoid that at all costs and demand a CT scan and whatnot first.

I'm actually female, but don't worry about the confusion—I'm told I come off androgynous online. I was checked recently and thoroughly for ovarian cysts and I'm perfectly free, despite hormonal problems. My periods are irregular, heavy for the first day, but the same each time with barely any cramps. I'm late for ovulating, so I know that might have something to do with this, but it hasn't happened like this yet.

Stupid, vexing, blah. I really appreciate the input, by the way.

 

[Shake-N-Jake]

Sorbs thank you so much! I will try but the Docs I deal with seem to not want to even go that route! I hope I can get this straight? Thanks for your help, I wish I could be more help to you....if I think of anything I'll be sure to post!

 

[Keona]

HAHA...thanks for the laugh... weird how we assume the gender of people on-line... so sorry...haha...

have you looked in to endometriosis? There are several women on here who can relate to having this and it seems like Crohn's and endometriosis are very common to have together. They tried me with birth control first to see if it had any impact and it did....a long time ago. The only way for them to know for sure (or with any certainty is to do a scope)...and even then they have difficulty finding it if it is hidden. My OBGYN is so certain I have it that she wanted me to go on the injections right away but my GP wants the scope just to see if there is anything else out of the ordinary. I have severe pain ovulating though... on a scale of 1-10...it is a 15 (been like this for years!)... in fact so painful I cant get myself to a hospital (I live alone). Your symptoms are very familiar to me though...the stretching feeling like something tears, right side....on and on... it got progressively worse to where I am having difficulty eating and when I do (which isnt very often) I am in a lot of pain and none of my clothes fit me as I am sooooo bloated. My bowels are out of control....working...not working... working way to much....etc...etc.... I dont know what a normal poop is to be honest.
Hang in... I am glad you have a reasonable GI... I get really frustrated with stories on here re: doctors dismissing people, out-right ignoring them... poor medical health care...
sounds like you are keeping an eye on it though
keep your sense of humour! haha

 

[Sorbys]

Sorbs thank you so much! I will try but the Docs I deal with seem to not want to even go that route! I hope I can get this straight? Thanks for your help, I wish I could be more help to you....if I think of anything I'll be sure to post!

No prob'm, I'm going to PM you with a link (assuming you don't have it).

HAHA...thanks for the laugh... weird how we assume the gender of people on-line... so sorry...haha...

have you looked in to endometriosis? There are several women on here who can relate to having this and it seems like Crohn's and endometriosis are very common to have together. They tried me with birth control first to see if it had any impact and it did....a long time ago. The only way for them to know for sure (or with any certainty is to do a scope)...and even then they have difficulty finding it if it is hidden. My OBGYN is so certain I have it that she wanted me to go on the injections right away but my GP wants the scope just to see if there is anything else out of the ordinary. I have severe pain ovulating though... on a scale of 1-10...it is a 15 (been like this for years!)... in fact so painful I cant get myself to a hospital (I live alone). Your symptoms are very familiar to me though...the stretching feeling like something tears, right side....on and on... it got progressively worse to where I am having difficulty eating and when I do (which isnt very often) I am in a lot of pain and none of my clothes fit me as I am sooooo bloated. My bowels are out of control....working...not working... working way to much....etc...etc.... I dont know what a normal poop is to be honest.
Hang in... I am glad you have a reasonable GI... I get really frustrated with stories on here re: doctors dismissing people, out-right ignoring them... poor medical health care...
sounds like you are keeping an eye on it though
keep your sense of humour! haha

Have you heard of Gender Genie? Here's a link, you might really like it: http://bookblog.net/gender/genie.php It's strange how many people can cross gender communication lines, so online confusion makes sense to me.

Guh, I'm beyond tired of all this autoimmune stuff. In mid to late January I was having incredible bouts of extreme exhaustion in the evenings, to the point I thought I would faint. It felt hypoglycemic, but I checked my glucose regularly and it wasn't. I also had bad bradycardia around that time for no reason. Both myself and my GP suspected autoimmune, so I got the usual tests; ANA, rheumatoid factors, ESR, etc, all came back totally clear and awesome. Now I wonder if it was the beginning of a Crohn's flare.

Last night I noticed signs I was ovulating, so it's really strange you brought that up just before it happened. I've always been able to feel myself ovulate, but it's rarely what I'd call painful. My god, I'm sorry to hear about your pain, though; my mom had that when she ovulated and, although she was undiagnosed, she was convinced she had endometriosis. Her periods were downright scary, I felt really bad for her. I hope you can get that straightened out.

The real killer for me is I can't go on oral contraceptives. I have factor V Leiden, and when I did go on them, I developed a two-foot long blood clot in my left leg that has destroyed the vein. I'm on warfarin for life. WOO, GENETICS. That's why I'm doubly scared of Crohn's, since I have two very complicating factors, along with a mitral regurgitation. When it rains, it pours.

I'd be convinced the pain is something gynecological, but my guts are doing very weird things on the right side. It's the only place that gurgles, very loudly, and when it does, it hurts. Maybe there's something pressing on it from the outside, though. Either way, going to give it some time and see what happens before I subject myself to what, for me, will be high risk tests.

 

[Christy]

Hi Sorbys.

This might sound like a stupid question, but has anyone investigated your appendix? There are some people who have chronic appendicitis where the pain & inflammation can come & go for a very long time, as opposed to the classic sudden & acute variety. I know this from experience ....

 

[Sorbys]

Hi Sorbys.

This might sound like a stupid question, but has anyone investigated your appendix? There are some people who have chronic appendicitis where the pain & inflammation can come & go for a very long time, as opposed to the classic sudden & acute variety. I know this from experience ....

That doesn't sound stupid at all! It's completely legit. I have a friend who had chronic appendicitis for two years and they kept blaming it on her ovaries. By the time they yanked it at her insistence, it was "all scar tissue". What an ordeal. All her pain was over in 30 minutes. Ridiculous, really. I'm sure it's much more common than it's given credit for.

But no, nothing has been really investigated yet. When I read about ovarian pain right now, it fits almost 100%, including the bowel problems I've been having, so I think that might be the first thing I should rule out. My friend did say it sounded similar to her chronic appendicitis, except hers came with a fever and nausea, mine has neither. So, hmm...

It wouldn't be so bad if I didn't have to worry about what Crohn's would do to my other problems. I'm susceptible to heart infections and I have a blood disorder — those are not mild complicating factors if you have your immune system boring through your intestinal wall, obviously. I think I'd be less concerned without that. Bah.

 

[Cat-a-Tonic]

Hi Sorbys, I remember you! You were the one who said "we're all pirates" ha ha!

I can't add much to what's already been said. I'm still undiagnosed myself so I haven't gotten any more answers than you have, unfortunately. Just wanted to drop in and say hi!

 

[Sorbys]

Hi Sorbys, I remember you! You were the one who said "we're all pirates" ha ha!

I can't add much to what's already been said. I'm still undiagnosed myself so I haven't gotten any more answers than you have, unfortunately. Just wanted to drop in and say hi!

Hahah, yeah, a friend of mine said that. Man, you've gone this whole time without answers? The more I research, the more it scares me how many people in the world are suffering from diseases like these. Wonder what's going on? I really hope you can get to the bottom of that junk! I'll be hoping for you.