You have IBS, that's it...

[Ginger]

You have IBS, that's it...UPDATE

Trying to think of how to summarize everything...38 yo female, sensitive stomach for as long as I can remember, anti-belts (never wore belts because they hurt my stomach or even tuck my shirt in), have bouts of bad D followed by periods of relative normalcy. Always chalked it up to anxiety, food poisoning, blah blah blah. Rewind 3 years ago, during my second pregnancy, around 20-25 weeks I thought I was going into labor. Mind you I had already been through one childbirth so I knew the feeling/pain. It wasn't labor, it was intense cramping following by crapping my brains out with the chills and feeling totally exhausted afterwards. Healthy daughter born, lost 60 pounds (maybe 20 pounds worth of water weight) in 3 months without dieting, exercise. Again, periods of normalcy followed by episodes (anywhere from a few days to weeks) of bad D (with labor like cramps). Get pregnant again, have chronic D most of pregnancy, had to get IV fluids for dehydration, didn't gain weight last 8 weeks of pregnancy. Thankfully, baby born healthy but on the small side.

That was 4 months ago. Have lost 40 pounds in 3 months without dieting or trying. Was seeing GI specialist during most recent pregnancy (first time seeing GI doc). He agreed with GP diagnosis of IBS but wanted to wait to do any scopes until after pregnancy. Last week, endoscopy and colonoscopy found no inflammation (not microscopic either), no celiac, one mucosal polyp in rectum. Dr. annoyed with me that I wanted him to call me to discuss results. You have IBS, that's it, take Imodium everyday, as much as you want basically. Come back and see me in 4-6 weeks, which is mid January 2012. I asked him if we could have missed any inflammation and he said no. I have poked around this site, read the thread, "you know you have Crohn's if..." and can relate to nearly everything. I do not have major blood in stool that I can see. Sometimes I see a little bright red blood but nothing like I understand many others suffer with daily. I do get bad canker sores, night sweats, tired, headaches, hip pain, back pain - but now I am tracking things bc I don't remember if those coincided with my other symptoms.


I guess this is mostly a vent, bc when I go back in January, I want some additional tests (serology, vitamin levels, check for anemia as I have always had a problem with anemia, other tests like maybe pillcam, etc). My GI doc seems annoyed with me and I feel like he is brushing me off, he asks me if I am stressed. Well, yeah, full time corporate job, mom, nothing like bolting out of a meeting to barely make it to the bathroom multiple times per day.
Father has intestinal issues, anal fissures which required surgery years ago, chronic D and C, but I don't think he has every been evaluated for IBD. He has weird health problems...renal amyloidosis (which required surgery), bronchiectasis, odd skin rashes, reflux, gastritis - off the top of my head.
I don't look sick, actually people comment on how good I look so close to giving birth. I am back to my normal weight, maybe a few pounds lighter than when I got pregnant. Right now, today, feeling pretty good. No D. But each time I get really bad D, I lose a few pounds. I do lose interest in eating bc it feels like it goes right through me.

So, that's my story, any comments are welcome...thanks for listening.

Update 30 Dec 2011
CT scan of abdomen and pelvis abnormal due to suspected giant hepatic hemangioma, tagged RBC test to be done to confirm. With CT scan results, GI doc still insists I have IBS and thinks this liver mass is unrelated. He had not yet seen the bloodwork below which I got some of the results today.

Bloodwork back
B12 463 (200-1100)
Vit D 26 (30-100)
AST 34
ESR 6
RA 8 (<14)
Platlet count 215 (140-400)
Hematocrit 34.6
Hemoglobin 11.9
RBC 3.89
WBC 2.9

Stool tests negative for C diff, H pylori, awaiting stool fat test

Question - would low WBC, anemia, vit D deficiency, so so B12 levels, slightly elevated AST, RA factor of 8 be common with IBS?

Going to be restested next week and have asked my doctor if she would consider B12 injection due to my B12 levels to get them closer to 1000. My "IBS" has really worsened in the last three years and I know that the liver stores B12 for 3 years so it could be that my stores are just catching up (i.e. going down).

Any thoughts are welcome.

 

[Crohn's 35]

:welcome: to the forum! Seriously I think you need to see a new Gi asap! You do not have to bleed to have Crohns, I dont, and it runs in my family, so that can be a precurser. You have many symptoms of IBD as well. It took me a full year of tests and I gave up and went to see a teacher doctor in Toronto, he said the drastic weigh loss, headache, D and constant pain, I am sure it is Crohns but want a Barium Endoscopy follow through to the Ileum. Hated having it done but he was right!

My previous surgeon took out my appendix and said it was all in your head, at least they gave you IBS. Most people dont suffer during pregnancy , but some do. You need to get treatment and sooner the better. One person on here was told the same thing as you and ended up in emergency surgery. DONT take no for an answer and get a second opinion you will do yourself alot of good and out of pain.

What country are you from? If you are in the states, say what state and someone can help you. Good luck and keep us posted!

 

[Ginger]

I am in PA, USA near Philly. I went to a doc in West Chester and think I want to try Philly. I have read IBD can go either way in pregnancy. Actually, I was looking forward to labor bc I knew I would Tylenol #3 after which would help my diarrhea, even if only temporarily. And it did, for a few days while I was on it..most women in pregnancy are suffer C, not me!
Thx for your reply.

 

[Cat-a-Tonic]

Hi Ginger, welcome to the forum and the club. I think most of us here have heard "it's IBS" (or worse, that it's depression, all in your head, female troubles, etc). But you definitely don't get the symptoms you've described with IBS - unintentional weight loss is a big red flag symptom that it's something more than "just IBS". And the fact that your scopes came back normal doesn't necessarily mean you don't have Crohn's. The scopes only see the very beginning and end of the small intestine - Crohn's can manifest anywhere from mouth to anus, and frequently appears in the small intestine. Keep fighting for more tests, specifically ones to look at your small intestine. Good luck, I hope you are able to get some answers and relief soon!

 

[David]

:welcome: to the forum! Seriously I think you need to see a new Gi asap!

What she said.

I'm glad you're getting your vitamin and mineral levels checked.

I wish we could get your biopsies stain for mast cells to test for Mastocytic Enterocolitis. I guess they could always put you on a couple antihistamines and see if that makes a difference though.

But yes, time for a new GI. Keep us updated, we're here for you!

*hugs*

 

[Ginger]

Re: getting labs, that can be done, can't it? I could ask for all records and labs sent somewhere else? First things first, I need a new doc. I am surprised he brushed me off and told me to take imodium daily. I go days where I'm fine with no problems and then hit a rough spot. I will not rake imodium daily when I am ok. My doc is a GI specialist from an office that claims expertise in the area and he hasn't even said anything about my rapid weight loss or other symptoms..grrgh

 

[David]

You could (and should) get the records for your new doc, but your specimens are very likely destroyed at this point

 

[Crohn's 35]

Good for you Ginger that you don't take imodium everyday, that is something that I am surprised at your doctor mentioning. I agree with David, get your Vitamin D and B12 levels checked. We tend to lose those important nutrients bcause of Diahreah. Most people who get diagnosed with IBD have low Vitamin D. I have been to about 5 Gi's and only 2 were experienced on Crohns. Not everyone shows crohns right away , tests can be false negatives.

 

[akiya]

Ginger I am sorry that your GI doctor is treating you with such "indifference".
I think that it may be time for a second opinion though. I do not know what your insurance is like but, I was diagnosed w/IBS when I was in my early twenties they did not perform any diagnostic testing at all. They kept telling me, "I was too young." for any disease conditions.
It unfortunately has not been until the past two years of it "just being IBS" for another doctor to step in and want to be proactive and I am now 36.
Telling you to take Imodium everyday and see him back in 4-6wks?? How you deal with your treatment is your choice, but I think you need someone who is actually going to listen. Did he at least advise you to call his office or go the ER if the Imodium is ineffective or you have any s/s of dehydration?

 

[Ginger]

Well, I'm not going to take the Imodium, unless I am at work where I can't leave or something. I am already dehydrated. Dr. said nothing except take it as much as you want. I specifically asked if I could take it everyday without any harm and his reply, yep. Not sure if he remembers, I am also a pharmacist. No way, would I take it everyday, that's my opinion. Here and there, taking it is fine, but I haven't been fully evaluated and it could do more harm than good. He seems to get really irritated if I ask anything remotely challenging.

 

[Crohn's 35]

He seems to get really irritated if I ask anything remotely challenging.

Hey Ginger that is his problem not yours. I would see a Gi specialist or fresh eyes. I am in a complexed postion and my current Gi cant find anyone experienced enough for me but at least he listens and doesnt just throw meds at me. As a pharmacist you know the OTC drugs are not all FDA approved. Your doctor is just trying to get rid of you. I would have not problem getting another doctor. Keep us posted.

 

[Ginger]

Update with CT scan and bloodwork

see edited note above.

 

[Sailorluna]

Hi Ginger -
Having done the "just IBS" dance that resulted in a blockage, resection and finally a Crohns dx I feel for you. Push that SOB or get a new guy. The sicker we get the less likely we are to push back (in my experiance anyway) so do it now while you still have the energy to do it.

I had a "clean" colonoscopy and upper endoscopy and was sent away with "IBS" - 3 months or so later I had that blockage in the small bowel. No one bothered to mention that the small bowel can not be seen by those two tests that had shown that I was fine.