Constant pain after surgery

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soccergirl
Veteran Member


Date Joined Mar 2003
Total Posts : 607
   Posted 1/9/2008 2:18 PM (GMT -7)   
Hi everyone, 
I need your help.  I had surgery in Feb/2007 to remove part of my intestines that were narrowed due to scar tissue from two previous surgeries.  My surgeon also broke up the many adhesions that I had growing in my abdomin.  Also, they did a liver biopsy to see if they could find out why my liver readings were so high.  My liver kept leaking bile, but the surgeon was able to stop it eventually.  I seemed to be healing fine and went home after seven days in the hospital.  I seemed to be healing fine until the end of March when I started to run a high fever and have increased pain.  They ran a CT scan and found an infection.  I was on and off oral and then IV antibiotics until the middle of June.  The infection is gone, but I'm left with constant pain in my URQ.  They don't know what is causing the pain.  I'm on a 100mcg patch of Fentanyl and once a month the pain spikes for a few days and is not controlled by the patch or oxycodone.  I really want to know what is causing this pain and what I can do to make it go away.  I'm so tired of being drugged all the time.  Has anyone here had this experience?  Any ideas?  This is really making me tired and a little depressed. 
Hugs,
Clara
 
Dx in 1984 with Crohn's Disease.  In 1988 my terminal Ileum was removed due to inflamation that caused it to rupture.  I had surgery in February 2007 to remove more of my intestines due to scar tissue.  I then developed a very bad abdominal infection and was on IV antibiotics until June 2007.  I now have chronic pain which may or may not go away. 


cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/9/2008 3:03 PM (GMT -7)   
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??
 
 
 
 
 
 
 
 
 

soccergirl
Veteran Member


Date Joined Mar 2003
Total Posts : 607
   Posted 1/9/2008 3:15 PM (GMT -7)   
No, they are not certain that I had an infection. They never took a biopsy or anything. I think they thought it was an infection because of my symptoms. I did get better when I was on the antibiotics, but I had to be on them for a long time. My fevers went away, but the pain did not.

I did get my annual gyno exam just last month and everything checked out fine.

It doesn't feel like CD pain and inflamation though I could be wrong. I seem to be able to eat, digest and pass all kinds of foods. My docs don't feel any thinkening or swelling in my intestines. They do feel alot of scar tissue. I have had five surgeries on my tummy where they had to open me up all the way. I know I do scar very bad.

I will ask my doc tormorrow if he thinks my liver might still be leaking and if that would cause the pain. I'm willing to ask anything at this point. I'm tired of the pain and the drugs.

Thank you for your thoughts. It really helps.
Hugs,
Clara
 
Dx in 1984 with Crohn's Disease.  In 1988 my terminal Ileum was removed due to inflamation that caused it to rupture.  I had surgery in February 2007 to remove more of my intestines due to scar tissue.  I then developed a very bad abdominal infection and was on IV antibiotics until June 2007.  I now have chronic pain which may or may not go away. 


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 1/9/2008 3:58 PM (GMT -7)   
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.

LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/10/2008 6:39 AM (GMT -7)   

What did the doctor say? Maybe,while they are figuring this out,could they give you a referral to a pain management doctor/nurse. We have a nurse at the hospital where I work,that is a pain specialist.

 

Just a thought


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/10/2008 7:15 AM (GMT -7)   
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!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


soccergirl
Veteran Member


Date Joined Mar 2003
Total Posts : 607
   Posted 1/10/2008 8:21 PM (GMT -7)   
Ok, let me see if I can give some more info. I have not taken birth control pills since 1994 when I had my tubes tied. I did not tolerate the hormones well. I do not have a gallbladder. It was removed in 1998 because it was covered in adhesions and was being "choked out." My monthly pain doesn't happen around my period, so it doesn't seem connected to that at all. I have had elivated liver enzymes and my last CT scan shows dialated bile ducts which my GI says is common in people without gallbladders. So, I think I've ruled out most of these things. I'm thinking it's adhesions, but I just don't know why the pain would spike every 30 days. I can't find a pattern as to what I'm eating or any activity that would bring this on either. It's very frustrating.
I do have a case management worker that gave me info on a pain management clinic. I'm going to call tomorrow for an appt. I kept thinking that this pain would go away on it's own over time. It is getting better very slowly. It's hard to tell that I am better because it's progressing so slowly. I finally realized today that I can yawn now without it hurting really bad. It still pulls a bit, but it's so much better. Hopefully, the pain management clinic can do something for me. I'm so tired.
Thanks for all the ideas.
Hugs,
Clara
 
Dx in 1984 with Crohn's Disease.  In 1988 my terminal Ileum was removed due to inflamation that caused it to rupture.  I had surgery in February 2007 to remove more of my intestines due to scar tissue.  I then developed a very bad abdominal infection and was on IV antibiotics until June 2007.  I now have chronic pain which may or may not go away. 


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 1/10/2008 8:34 PM (GMT -7)   
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
Crohn's since 1988
3 resections


soccergirl
Veteran Member


Date Joined Mar 2003
Total Posts : 607
   Posted 1/10/2008 8:43 PM (GMT -7)   
Yes, I do still menstrate - darn it, but the spike in pain I have does not happen anywhere near when I have my period. It would make more sense if it did, but nothing I ever do seems to make much sense.
Thank you for your input though.
Hugs,
Clara
 
Dx in 1984 with Crohn's Disease.  In 1988 my terminal Ileum was removed due to inflamation that caused it to rupture.  I had surgery in February 2007 to remove more of my intestines due to scar tissue.  I then developed a very bad abdominal infection and was on IV antibiotics until June 2007.  I now have chronic pain which may or may not go away. 


crohnie1985
Regular Member


Date Joined Nov 2007
Total Posts : 140
   Posted 1/10/2008 9:53 PM (GMT -7)   
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.

soccergirl
Veteran Member


Date Joined Mar 2003
Total Posts : 607
   Posted 1/10/2008 9:56 PM (GMT -7)   
Thank you crohnie1985. If you find out anything that helps and I mean anything, please let me know. Feel free to email me or IM me. I know I would give anything too. I am going to try massage therapy to see if they can break things up from the outside instead of having more surgery which seems to be making things worse. Good luck to you too!!!!
Hugs,
Clara
 
Dx in 1984 with Crohn's Disease.  In 1988 my terminal Ileum was removed due to inflamation that caused it to rupture.  I had surgery in February 2007 to remove more of my intestines due to scar tissue.  I then developed a very bad abdominal infection and was on IV antibiotics until June 2007.  I now have chronic pain which may or may not go away. 


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 1/11/2008 4:38 PM (GMT -7)   
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
Crohn's since 1988
3 resections

Post Edited (ozonehole) : 1/11/2008 4:41:08 PM (GMT-7)


soccergirl
Veteran Member


Date Joined Mar 2003
Total Posts : 607
   Posted 1/11/2008 5:19 PM (GMT -7)   
Thank you for the webpage. It was very helpful. It's too late to call my surgeon today, but next week I will call and ask him about his knowledge of barriers and if this is something that may help me. I don't want another surgery, but I might have to have one to get better. It's a hard choice, but at least it's better then just trying to live with this pain.

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

Thanks again!
Hugs,
Clara
 
Dx in 1984 with Crohn's Disease.  In 1988 my terminal Ileum was removed due to inflamation that caused it to rupture.  I had surgery in February 2007 to remove more of my intestines due to scar tissue.  I then developed a very bad abdominal infection and was on IV antibiotics until June 2007.  I now have chronic pain which may or may not go away. 


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 1/11/2008 8:56 PM (GMT -7)   
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.
Belleenstein:

30+ years living with Crohn's.


soccergirl
Veteran Member


Date Joined Mar 2003
Total Posts : 607
   Posted 1/11/2008 11:03 PM (GMT -7)   
Thank you for your post. I do believe that I know my body better then anyone else and I don't think it has anything to do with anything gynecological. I do think that it's either something to do with my liver or adhesions or possibly nerve pain from surgery. It does hurt when I take a deep breath and especially when I yawn which makes me think it is an adhesion. Maybe an adhesion stuck to my liver? You are right Belleenstein, I do want to know what is causing this pain. I feel that if I were to know the cause then maybe it can be fixed. I don't want to mask the pain, I want to get rid of what is causing it. It is very frustrating. It's this reason that I haven't gone to the pain management clinic yet. I want more then just learning how to manage the pain. I want to cure it. I'm still hopeful that it will go away with time. Or someone can figure out what's going on. If nothing else, I haven't given up yet and I don't plan on it.
Hugs,
Clara
 
Dx in 1984 with Crohn's Disease.  In 1988 my terminal Ileum was removed due to inflamation that caused it to rupture.  I had surgery in February 2007 to remove more of my intestines due to scar tissue.  I then developed a very bad abdominal infection and was on IV antibiotics until June 2007.  I now have chronic pain which may or may not go away. 


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 1/12/2008 6:15 PM (GMT -7)   
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
Crohn's since 1988
3 resections


soccergirl
Veteran Member


Date Joined Mar 2003
Total Posts : 607
   Posted 1/12/2008 8:11 PM (GMT -7)   
I have mentioned this to my doctor, but he doesn't know what is causing this spike in pain.  In fact, he doesn't know why I have any pain at all.  It's so frustrating.  That's why I'm trying to figure it out myself.  I'm just not ready to give up trying to figure this thing out.

Hugs,
Clara
 
Dx in 1984 with Crohn's Disease.  In 1988 my terminal Ileum was removed due to inflamation that caused it to rupture.  I had surgery in February 2007 to remove more of my intestines due to scar tissue.  I then developed a very bad abdominal infection and was on IV antibiotics until June 2007.  I now have chronic pain which may or may not go away. 

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