Constant pain after surgery

Well, despite what your surgeon may have done, you can still have a lot of bile sneaking into the region where your resection was and it could be irritating it. there is a powder they prescribe for this, you just mix it in some juice and you can take it 2-3 times a day depending on how bad it is.

Otherwise, your disease still might be active. we have similar stories, and mine grew back so quickly even while i was taking imuran. you're probably going to need a colonoscopy if you have not had one already or a small bowel series. CT scans are useless sometimes. My feeling is that you are having flares in an area that has been repeatedly operated on (which means its actually quite narrow b/c you dont have a cecum) and it could feel different from ones you have had in the past because its now developing in areas where it was once not diseased.

Another thing...are they absolutely sure this was an infection and not inflammation?

Other thing to think about...

ovarian cysts...which can cause women a ton of pain and mimic infection symptoms. it's in the same area. they probably would have seen those on the ct scan, but like i said those tests can miss alot. perhaps see a gyno??

Some of your symptoms sound familiar to me... Four times I have had episodes of fever/ URQ pain, starting last May. It lasts up to 6 days and if it happens, it comes on monthly, always before my period and always self-limiting. Up until recently, I was pretty much pain-free outside of those episodes.

At the same time this started, my liver enzymes, WBC, and sed rate were up. An x-ray found my liver was enlarged, so then I had a biopsy/CT/MRI/ultrasound/and finally a venogram to rule out a blood clot in the liver (Budd-Chiari Syndrome). This was a serious concern because at the time I was on birth control pills, luckily there was no clot. As soon as I stopped taking the pills, my liver enzymes and ESR went down. I had several consultations and they agreed all my problems were due to the pills. I felt better and my bloodwork was getting better, too.

Unfortunately about six months later (December), I had another episode of fever, although the pain was not as bad. Now I have been diagnosed with Crohn's. I am guessing that the BCPs were aggravating the situation, because so far my liver enzymes are still OK (we'll see). If you are on any kind of hormones, I would suggest you stop taking them...

Before the Crohn's diagnosis, in my case the other differential for URQ pain was gallbladder disease (which is suggested by high amylase/lipase, and can be detected by ultrasound or via a HIDA scan--I had all of these, all negative). I myself also wondered about Sphincter of Oddi dysfunction and Endometriosis, since I read on other forums both cause URQ pain and both can get worse before your period (but then again, so can Crohn's). If you are taking immuno-suppressive medications for Crohn's, you are also at higher risk for a liver abscess.

Best of luck figuring this out, I hope you feel better soon.

To me it sounds like you are having alot of problems with adhesions. I have had 4 abdominal surgeries myself and I know I too have alot of adhesions. These can be quite painful. Unfortunately, they usually can't do anything about these because doing surgery to fix them only creates more. I am so sorry you are feeling so much pain. I think a referral to a pain mgmt doc might be in order for you. Good Luck!

Forgive my ignorance, because I'm not a doctor and I'm not a woman. As I understand it, having your tubes tied still leaves you with a menstrual cycle. Could the pain recurring every 30 days be related to that cycle? I did a little googling, and found a few articles suggesting that having a tubal ligation might cause menstrual cycle disturbances and gynecological problems. An example:


There’s a 5-25 per cent chance of experiencing post-tubal ligation syndrome (PTLS). First described by US women’s-rights advocate and medicolegal advisor Dr Vicki Hufnagel, PTLS causes pelvic pain, bleeding and abnormal menstruation (Fertil Steril, 1998; 69: 179-86). One in four suffer heavy menstrual bleeding after the operation. Other symptoms may require further gynaecological surgery, including hysterectomy.


That's about all I can say on this topic, of which I admittedly know next to nothing.

best regards,
Robert

I also have ongoing pain issues stemming from adhesions, boy oh boy what I would do to get this fixed. I know its a mess inside, I am currently checking my options too, I will be keeping my eyes on this site. good luck.

Here is some info that might be of help:

http://www.obgyn.net/women/women.asp?page=/chat_cal/Wiseman-012799

I'd talk to a doctor who knows about INTERCCED (Johnson & Johnson) and Seprafilm (Genzyme), and laparoscopy.

As for the menstrual cycle, does the pain always occur at the same point in the cycle (like beginning/middle/end of cycle), or is it just random?

best regards,
Robert

I don't understand why gynecological symptoms would be associated with pain in the upper right section of the abdomen. Isn't it more likely to be connected to your liver, especially since you have a history of problems with the liver -- enlargement, elevated enzyme levels. You seem pretty sure that this feels different from crohn's inflammation and I think you need to trust your instincts. You've lived with this disease for a long time and I'm sure you know your body well. Does the pain hurt when you breathe? Is it sharp, dull, slicing, burning, throbbing, aching? Does it move when you move? For instance if you move from your back to your side does the site of your pain change?

I'm glad your seeking help from pain management professionals, but managing the pain isn't going to do anything to help you figure out why you are having it. Maybe it will turn out to be functional pain, caused by adhesions, but the not knowing is what I think is really bothering you -- and it would bother me too.

hope you can keep after your health providers until you are satisfied that you understand what is causing your pain.

soccergirl said...

As far as the spike in pain...it happens about a week after my period has stopped. So it's in between cycles. I don't know if that means anything or not.

If I were you, I'd mention this to the doctor. I won't try to guess what the problem is, but if there is a pattern, it might be something that a doctor would recognize.

best regards,
Robert