New, but need advise? Help?

[Dena V]

Hey,
I was diagnosed w/Crohn's in 1997. I have had a number of severe flares that come on suddenly and within a day I'm in the hospital and there for a week. It started in my Esophagus (believe it or not!!) and it took them a while to figure it out. I'm on Pentasa and have been free of major flares for a couple years--thank goodness.

However, Two weeks ago I started with pretty constant nausea and then began experiencing left side pain. that had been going on for a week when I went to the dr. My blood is normal, my urine is fine (and I'm not pregnant)! They want to send me to a GYN, but I don't think that is the problem. I've had no Diarrhea, and no other obvious crohn's symptoms and no fever. The pain is in my upper left side near my ribs.

My problem is, I don't know if it's crohn's or something else. Anyone have any ideas??

The pain is pretty nagging and it's worse when I lay down (which sucks, cause all I want to do is lay down!!)

 

[Kev]

Hi Dena.. Welcome to the forum. I hope that you'll become a regular on here, IF no one comes up with a cure for crohns that is. anyway, I dunno what to say or how to help.. bear in mind that we aren't medical professionals or anything; just a few folks who compare symptoms/treatment, and try to help one another out if we can. I dunno from your post if your referring doc is a GI or not, but I'm guessing he/she probably AREN'T 100% convinced that this is a GYN problem either... but they probably want to rule that out first, just in case.

I mean, part of the problem MAY be the location of your pain, and its behaviour
typically, lower right quadrant is a prime point of pain... but this disease can be so 'atypical' at times. and anyone of us... but more likely the female members.. could toss any number of "sheer wild assed guess's" (SWAGs for short) at you,
(I'll throw out some, just as examples... cause literally what DO I know, right?)
SO, KEEP IN MIND.. I'M NO DOCTOR... AND I DON'T THINK YOU HAVE THIS, OK?

Ovarian cysts... or a fibroid mass.. damage from an ectopic pregnancy (past)..
endrometriosis (sp?) in falopian tube... uterine mass or cancer... any/none etc..

My 'gut' is... if your doctors ARE GI specialists, or intimately familiar with you and your IBD/crohns.. that they want an outside, expert opinion that none of those MAY be causing your recent symptoms. once that is ruled out, they can safely go back and re-examine your current situation... cause rarely does crohns/IBD kill... but some of those other, rare possibilities CAN, if left unchecked. OK? That is just another SWAG on my part. So, I guess my long winded advice is to do as your dr. wants, go see the GYN, get it all checked out.. and when the GYN is done and gives you a clean bill of health, then you can go back and thumb your nose at your referring dr.. Then you can come here and tell us how stupid your doc REALLY is... and of course, tell us all a little more about yourself N your IBD

 

[Dena V]

Thanks Kev,
I guess I just wish answers grew on trees. I just hate being in pain and having to guess at it. My PCP is new and I haven't seen a new GI yet (resent Insurance changes) I just think with the Crohn's background that the GI would be the priority!!

The Dr did a pelvic exam in the office and (although uncomfortable) I didn't feel any major pain in that area.

Part of me is really hoping it is the Crohn's because I don't want to think about anything else being wrong too!!!

As far as "typical" is concerned --- I've found there is no such thing!!!!
My crohn's started in my esophagus, so nothing surprises me!!

I'm worried that it's getting worse and it's Friday, I hope I don't end up in the hospital over the weekend!!!!

 

[Kev]

yeah, why do things always hit the fan on the weekend. I wish things improve and you avoid the trip. If its any consolation, I have a historically bad back ontop of my IBD.. and for some bizarre reason, it always picks long weekends to go out.

 

[Belein]

Also New, and Need Guidance...



Hi Everyone,

Apologies in advance for hijacking this particular post, it is not at all my intention...:confused2:

I'm new to this forum, and also technically challenged :yrolleyes: when it comes to posting a new thread on here. (If anyone could explain how to do that, I would REALLY appreciate it).

This is a WONDERFUL resource, and once I know how to properly post new threads and such (I read the FAQ but still couldnt figure it out), I will be coming back often.

I live in Houston, TX, and I just had anorectal surgery 16 days ago. My doctor has strong suspicions that I have Chrons. The surgery was to debride and clean scar tissue for 2 fissures, (one large chronic posterior one), and a newer smaller fissure located right next to a fistula, and also to place a loose seton around the fistula. The doctor told me I could be back at work 3 days post surgery. Ha! I ended up needing to take 7 days off of work, and my first day back at work was Tuesday March 18th, and then only for 3 hours. My current pain level is still about a 5.5 on a 10 point scale, and some of that is due to the doctor burning off some scar tissue yesterday during my first post-operative appointment. The healing process and pain associated with the deeper more chronic fissure will likely take several more weeks at the least. Right now even with my current pain levels, I am about 65% back to "normal". The pain increases of course for about an hour post BM, but that is an improvement over the previous 5 hour spike in pain. I still have bleeding and am still on the extra fiber and stool softeners to prevent more problems during BM for the healing fissures. The pain medications the doctor put me on were not explained to me at all, and the first one (Keterol, unsure of the spelling) did an adequate job for about the first 5 days, reducing the pain from about 9 to maybe 7.5 or so, but due to renal failure, I was not allowed to take them past 5 days, and was put on Darvocet which was awful (constant nausea, ears ringing, hands shaking, slurring speech, dizzy,etc)-needless to say I was only able to stay on that for 48 hours before I was back to nothing more than Tylenol, and prayer to flight the pain. I of course missed a lot more work than I expected due to the pain (and bathroom troubles), and ended up dealing with a very insensitive member of senior management who berated me upon my return last week telling me "you better fax the doctor letter to the HR Director pronto"

Anyway, the joys of surgery and the American healthcare and workplace. By the way, I was also diagnosed with Celiac in 2002, Silent GERD (chronic cough is my only symptom) in 2007, and "intestinal" endometriosis in 2005.

In the next few months, the colorectal surgeon has me scheduled for a colonoscopy and barium swallow/enema (not sure which one, but she wants to see the small intestine-which one would that be?), and IF the results do NOT definitively show Chrons, then she told me that she wants to do a endorectal flap/anorectal flap surgery to close the fistula mechanically.

In my online research I came across the AFP-Anal Fistula Plug which is used for so called "non Chrons" fistulas and while it is more expensive than the flap surgery, it is also MUCH less invasive and the recovery time is MUCH shorter, in short- no cutting, suturing,etc and all the other nasty things involved in the flap surgery.

I have a long list of questions the next time I see the doctor, but the first one will be "Am I a candidate for AFP-collagen plug, and if yes, why did you not mention it to me?"

I have been to about 15 doctors just in the past 2 years to diagnose some of the above conditions.

Has anyone had the AFP plug placement for fistula?

As soon as I know how to properly post new thread, I will repost this there.

Thanks in advance!!

 

[Kev]

Hi Belien.. welcome. Short answer.. just go to the section where you want to post, then click on yjr 'new thread' icon at the left side (instead of the post reply icon)... I'm paraphrasing here... from memory. You're right, it isn't in the FAQ's, and it should be. Maybe our admin will get around to it.. he's a great guy, but at the moment really busy.

 

[Belein]

Thank You!

Thanks much Kevin, it worked!

 

[Cara Fusinato]

Dena -- have you had an ultrasound for your gallbladder and pancreas? The pain is often in that distribution from those. Can you correlate it to anything diet related (i.e., greasy food or alcohol etc.)? Have you had a cardiology workup? That is the prime site for those issues and cardio sure gives A LOT of isses. Is it possibly stress related? LOTS of people get pain in that distribution and it is a stress response. Consider with your doctor some of these areas to workup. I don't see why GYN would be a consideration in the location you mentioned, that's just odd. Crohn's ususally gets you in the right lower quadrant, though it could end up anywhere really, but there are some logical choices to examine for that location bodily.

 

[Dena V]

Thanks Cara!

I made it through the weekend OK, Thank goodness!!

Still have the pain and been pretty nauseous this weekend, but still no fever or diarrhea. I'm eating, but not much!!

The Dr. insists I see 1 specialist at a time, and he wants the Gyn to be first. I'm going to keep my appointment with the gyn on Wednesday, but after that I'm going to insist on a GI. I will change PCP's if necessary!!!

Stress? Well, there might be a bit of that in my life!!! But from past experience, the stress usually doesn't cause the problem, but makes an existing issue worse!! And who doesn't have stress???

It's just so frustrating sometimes!!

 

[Joyce]

Hi! Just to state briefly i have had crohn's disease for 10 years now. And recently i have started taking prednisolone with imuran. I am decreasing my dose of prednisolone weekly from 25mg to 0mg. And i am taking 100mg of Imuran. I have been on Imuran for 3 weeks now and I feel a significant difference already. I do not have terrible stomach pains (maybe once in a while only) and my stool has no more blood in it, and it is slowly getting back to normal. My question hoping that someone can help is, has anyone gotten pregnant whilst on imuran? i keep reading mixed reviews on the subject and majority is negative. My doctor said it is not a problem and many woman have gotten pregnant and have had healthy babies on it. Im very worried because in about a year time i want to start trying. Does anyone have advice? or has anyone gotten pregnant on imuran?

 

[Kev]

Hi Joyce.. Have you gone to the drug manufacturers website to see what they say? I was on it, but suddenly became toxic @ ramping up to 100 mg. If there are mixed messages, esp. from the makers website, take that info to your doctor and discuss the discrepancies. This darned disease is sooo unpredictable. What is OK for one has just the opposite effect on others. and, drugs aside, some folks have reported that the stress of pregnancy triggered their first episode, or threw them into a relapse.. while others managed A-OK.

I dunno EVEN if past personal experience with pregnancy can help predict the next one (if this isn't your first). My ex had a totally uneventful 1st pregnancy, yet at delivery our first born ended up in neo natal intensive care. The second pregnancy was a nitemare... a daily struggle that had her in hospital and on bed rest... yet the delivery was an uneventful thing. So, maybe a decision like this isn't so much a matter of the head, crunching numbers N odds; but one of the heart... and a hope for the best attitude. Whichever way you go, wishing you all the best. Keep us posted on what you decide, and how you make out..

 

[RYANP]

Dena sorry to here about your troubles. But can you elaborate on the crohns starting in your osophegus. I have recently been diagnoesd with it and have a sore throat, yellowy tonge coating and a bad taste (its not thrush) - just wondering if this sounds familiar cos im a little worried waiting for the docs to confirm.
Regards
Ryan

 

[Dena V]

Hey Ryan,

I had terrible pain right under the bottom of my sternum whenever I swallowed anything, including water and warm liquids. This continued in severity for a few days, the Dr. thought it was a possible gallbladder problem and set me up for an ultrasound the next day, but I woke up in the middle of the night with a high fever and terrible pain!!
I ended up in the ER and was in the hospital for a week!! They had a hard time figuring out what it was, but eventually diagnosed the Crohns after an endoscopy.
I've never had the tongue coating thing, but after I was diagnosed, every time I had a sore throat I thought it might be the Crohn's. It can effect any part of your digestive tract, from mouth to anus. But in my experience, nothing made it feel better, and everything I swallowed caused pain. So if your throat is scratchy and drinking water helps or cough drops help, it's probably not the Crohns, but I would talk to your Dr about EVERY concern you have.

Hope this helps!!

 

[Dena V]

Ryan,
I just had a thought, Are you on any medication?

Sometimes certain meds can cause sore throat.