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Crohn's Disease
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Posted 8/21/2009 3:20 PM (GMT 0)

Hi everyone,

I don't even know where to start explaining what I have been through... but I think those of you on here have a better understanding than almost anyone else I talk to. I am a 31 year old female, and feel healthy in every way except for whatever is going on with me.

I haven't been diagnosed with Crohn's yet- although it is on the table- my doc looked me in the eye recently and said he had no idea what is wrong with me. I used to be a vibrant happy person, and an athlete before all this happened, now I feel mostly like lying on the couch and can burst into tears for no reason.

 My brief history - 3 1/2 years ago I developed horrendous pain- at the time I couldn't tell if it it was rectal or vaginal- a few weeks after a very violent stomach virus. Long story short, 14 doctors later, multiple possible diagnoses that never were confirmed, I had a "chronic rectal abscess" drained surgically earlier this year. I've had CT scans, MRIs, three sigmoidoscopys, one colonoscopy, and three and 1/2 years of rectal and vaginal exams, trials of antibiotics and other medications and anti-inflammatories. I've had three surgical procedures just this year to try to figure out what exactly is going on in there... I don't even feel like my body is my own anymore, like it has betrayed me. My abscess never showed up on any imaging, until a rectal ultrasound earlier this year. I had another MRI before my surgery, and the abscess didn't show up on that either, and they knew exactly where to look from the ultrasound...

I felt better for a few weeks after the surgery, other than the new fissures from the trauma of the surgery, but also I kept asking about a 3 inch or so "bump or ridge" along my sphinctor muscle. He thinks this is muscle, which is responding to the chronic inflammation... but to me it "feels" just like the abscess did. I am scheduled for my 3rd MRI and he put me on cipro and flagyl, as he says he is at a loss to explain what is going on with my body. I never ran a fever, even though that abscess sat undiagnosed inside me for years. For a while, I think my docs thought I was a bit crazy, thank God they found the abscess... they had to believe me then.


My daily symptoms are pain that I feel to the back of my vagina and in my rectal wall- constant pain and pressure both rectally and vaginally, pus drainage from my rectum... I'm also hurting again in the area of the previously drained abscess. I'm just feeling so hopeless and disheartened. I feel like they may never figure me out and this could be the rest of my life.

I'm married, and my husband has been an amazing support for me through this. We have had no sex life in the last 3 years, although tried twice recently after I was healed from my second surgery this year. I was feeling so good for a few weeks, then after they went in surgically again to address the rectal swelling/bump, I have felt horrible ever since. We don't have children yet, kind of hard when you can't have sex, and I want to try to get this under control before even thinking about getting pregnant.

Has anyone out there gone through something that sounds like this, or do you have any words of wisdom for me? I've got good friends, good support, but just going through that cycle of grief, and stuck in sadness...

Thanks in advance.

Posted 8/21/2009 3:49 PM (GMT 0)
I'm so sorry you are going through this, there are so many emotional factors involved with illness (especially undiagnosed illness)... it's easy to feel your old self slipping away or drowning in a sea of confusion. I've been there and still drown from time to time but it's kind of vindicating getting a diagnosis even if it's not always a good one!

I'm glad you have a good support network, it makes a hell of a difference, I haven't had the experience you have but can sympathise with the frustration. I'm new here too and they all seem a lovely supportive bunch - just what we need eh?

Wishing you all the best.

x
Posted 8/21/2009 8:24 PM (GMT 0)
My heart goes out to you Jes... I'm so sorry you're having so many troubles figuring out what is going on. Being undiagnosed is the worst kind of limbo when you're in constant agony... I feel for you.

You rattled off a lot info, including "14 doctors", so I can only imagine that you've gotten 2nd, 3rd, and 13th opinions already?

It may seem like a stupid thing to hammer in, but you MUST find a good GI who is experienced with Crohn's disease and Ulcerative Colitis. MANY, many GI's are treating people with little or no real knowledge of what they're doing... I know more about my meds than my GI's here, but back home my Doc was my savior. You need someone EXPERIENCED with crohn's and IBD... I had multiple surgeries and an equally annoying number of tests before I found the GI that could properly scope me, properly TAKE BIOPSIES (this is a big one), diagnose me, and who could deal with me properly as a patient (ie, not treat me like an idiot).

I know it's a wicked piece of advice given what you're going through, but it makes all the difference in the world. YOU NEED HELP, and your docs seem incompetent (all 14 is no surprise!), so any energy you have to put towards this - I would put towards finding the right doc for YOU. Look online under "specialties" in gastroenterology and see if the doc lists Irritable Bowel Disease... or ask on the forum for a name of someone in your area. Anything. Just find a good doc. All these tests and treading water are just that without the proper detective to put it all together. You need a medical Matlock.

P.S.
Flagyl makes me feel like I'm dying no matter what is or is NOT wrong with me at the time. For a little immediate relief, you might ask your GI if he thinks the Flagyl is totally necessary or if he's just prescribing it because he doesn't know what else to do. It's such a common thing to do that he might let you stop if you tell him you'd like to see if you feel any better without it. just a thought. I hate that stuff.

Hope things get better for you soon... in the mean time... we're here... ((hugs))
Posted 8/21/2009 8:48 PM (GMT 0)
I'm actually going to second the opinion that you look for a great doctor.  My history is nothing like yours, however I have fistulizing crohn's and wanted to say that they never have shown up on any imaging tests.  I had a CT scan and small bowel follow-through less than a month prior to my 3rd surgery 9 days ago and they didn't show up there (I also never have fevers either).

I have been diagnosed for 12 years and have been called crazy also when what I had was progressing crohn's disease causing a lot of pain!  It's definitley vindicating when you have a diagnosis so working towards finding out exactly what the problem is, is what you need to do.  I just switched from a GI to a GI who only works with Crohn's, she said that a regular GI maybe has 5% crohn's patients.  My "old" GI said whoa when I told him I was staring another surgery in the face, my new doctor said he needed to get a life buddy...you need surgery.  If your quality of life is that sucky, surgery is your friend. 

Keep in mind that my old doctor was still one of the better ones I've had over the years.  To date there are probably 2 that I would recommend and many many others I've seen and dropped for one reason or another. 

I just wanted to let you know that you're not crazy, even when you feel like you might be :)  We all have days where we feel beat and want to cry.  When I'm feeling bad, my emotions are right on the surface...you are lucky to have support.  Lean on them, keep telling them what you're feeling so they understand as much as possible and maybe let them help you with doctor research and also attending appointments to feel out the doctors you try.  I could recommend a good doctor in Raleigh/Durham, assuming she is still there as well as one in Baltimore if you are anywhere near those locations.

Good luck

Kim 

Posted 8/21/2009 9:04 PM (GMT 0)
Wow - it does sound like they don't know what's happening. From your description, it sounds like your surgery is not healing properly. Do small wounds elsewhere heal normally? If so, it may be an encapsulated infection. They may not have got it all in the surgery since they only had the ultrasound to guide them. Ultrasound is a fuzzy image and may not show smaller secondary pockets. Antibiotics don't work well on encapsulated infections, but I don't know what else they could do for you.
Posted 8/22/2009 2:12 AM (GMT 0)
Hello Jesflr337!

Welcome to the Forum! I am so sorry you have had to deal with all of this!! There are several here who have had long serious illnesses due to chronic infections from abscesses and fistulae. I agree with the others that it is imperative that you see a colo-rectal surgeon (CRS) who has significant experience in Crohn's Disease (CD) -- even is you don't officially have CD, they will know how to deal with persistent problems just like yours. I recommend a CRS who is with a good teaching hospital. They tend to be up on the latest advancements and are on salary (so their pay isn't linked to whether or not they do surgical procedures).

I am not a doctor, and I certainly am not claiming to be one, but I did have some problems similar to yours. First, I had a persistant infection from an abscess that I ignored for far too long. The abscess formed a fistula and the pus would drain out. The abscess really wasn't a pocket of pus once it started draining, so it was hard to spot. But the massive infection was very evident -- the tissue from anus to the top of my vagina was very infected -- inflammed/swollen, red, and hard. Deep tissue infections, called cellulitis, are dangerous and can be life threatening. I spend several days in the hospital on IV antibiotics, and then abiout 5 months on flagyl and levaquin (my doctors say it is excellent for cellulitis, and it is cipro's stronger cousin). The other thing my CRS gave me was a seton, which is a drain that is inserted into the fistula to keep it open. With a seton, the infection can drain out instead of getting trapped. The seton really made a remarkable difference!! With the seton and the long course of antibiotics I got well again. I so feel for you now because you are still in a very bad place that I remember all to well!!!

Please remember that all this infection casues inflammation in the body and not just in the area of the abscess. Inflammation in the body is known to cause fatigue. When I was so ill I felt weak as a new-born kitten.

Also, as mentioned by others, flagyl is a excellent, strong antibiotic that is used for bad infections. BUT it can cause difficult side effects, including making you feel very emotional and anxious, no appetite, fatigue, and many others. You may need to endure the side effects becasue there are few antibiotics that do what it does, but I would talk to your doctor or nurse if they are really bad.

I really think this has gone on way, way too long for you, and you need to get expert treatment ASAP. Please let us know how you are doing and if you can get in to see a specialist. I am praying for a knowledgeable doctor who can take care of you, strength and peace for you, and relief from pain!
Posted 8/22/2009 2:20 PM (GMT 0)
Thank you thank you thank you for all the support and kind words!
Yes keeper, other wounds heal just fine for me- I'm a "zebra" apparently, that is what most of the docs I see tell me-
My doc now is at UNC Chapel Hill, he is a CRS, and is the one who finally figured out it was an abscess making my life miserable. He did offer to refer me for another opinion, if I wanted, as he said he can't figure out what is hurting me now and what caused it. I did see the head of the department a year ago, he sent me away without really examining me or looking at my records and said "if I was a betting man I'd bet you have endometriosis." He was obviously wrong. I guess I wonder if after seeing as many doctors as I have who is left! It was the pelvic pain specialist at UNC who convinced my current doctor to be present for an exam under anesthesia, and then he finally took me seriously...
I am scheduled for a third MRI after this course of antibiotics. He said sometimes the body takes a while to "calm down" from an inflammatory response, so he is not sure if what I have now is simply a result of the chronic infection I had or if it could be another abscess/fistula.
I guess I just don't understand how in a medical world we live in full of technology, how this is so ridiculously hard to diagnose! I do appreciate his honesty, in telling me he is unsure of what is going on. I can't give up, I have to keep looking for an answer.
It is nice to know I am not alone out here, that is how it feels sometimes.
Posted 8/22/2009 9:17 PM (GMT 0)
Either another abscess or a hematoma could be pressing a nerve in the area. If the antibiotics don't give a bit of relief, ask about a hematoma from the surgery.
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