Flare 2 months after resection

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Leah64
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 3/13/2009 6:12 AM (GMT -7)   
So, here's my story.  I was diagnosed with Crohn's 1 year ago.  mad  Two months ago I had a small bowel resection and figured great, atleast I'll have some relief for a while but 2 nights ago i woke up in excruciating pain.  I went to the er last night and had a CT scan done and low and behold I'm having a flare a small ways up from where my surgery was.  I am on Prednisone and will be making an appointment to see my GI doctor.  What are the chances?  Has this happened to anyone else and if so what is the outlook as far as having to have surgery again in the near future. 

colin84
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 3/13/2009 6:23 AM (GMT -7)   
Hi Leah

I had a small bowel resection in 2005. The next day I had the same crohns pains but no-one believed me. I then spent the next month begging doctors to listen to me! Eventually they agreed that I was right and was put on remicade which worked for a while and then onto Humira which again worked for a while. I am now on Modulen and feeling good. I have been warned to expect future surgery but for the time being I am being positive,

Probably not what you wanted to hear but I think its important to share stories and remember everyone is different and no two people are the same!
24 year old male from London
Crohns since 2002, Colostomy in 2002 and Small Bowel Resection 2005
Have tried Infliximab (Remicade) and Adalimumab (Humira)
Numerous spells on Prednisolone 40mg, Suspected Abscess in June 2007 - treated with antibiotics
Flare up in Feb 09 resulted in 2 week hospital stay
Now out and on Modulen - no food for ideally 8 weeks ARGH!!!!!
Also on Azathioprine 125mg
 


catpower
Regular Member


Date Joined Nov 2008
Total Posts : 192
   Posted 3/13/2009 7:10 AM (GMT -7)   
Hi Leah. I'm sorry that has happened to you. It happened to my brother, who also has Crohn's. He had surgery, and it turned out there was another damaged area that they had to take out 2 months later.

Hopefully your new inflammation is treatable with meds and not the type that will not require surgery.
Diagnosed with Crohn's Disease; Meds: Entocort & Asacol; female in late 20s.


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 3/13/2009 8:09 AM (GMT -7)   
I also had a flare less than 2 months after my resection. It took a while to figure it out as I also got 2 abcesses after surgery that had to be dealt with too. I started back on Imuran and almost 5 weeks into it my bowels are finally starting to settle down. I was already on a high dose of pred when this flare started so it was decided that it was doing me no good anyways so we continued to taper.

If you can get on Imuran or remicade if needed hopefully you can get into remission. Sadly surgery doesn't always mean remission, but surgery and good meds can sometimes do the trick.

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.

Tried: Pentasa, Cholestyramine

Presently taking: now on 10 mg prednisone, Imuran, probiotics, calcium, B12.
For asthma I take Advair 500, singulair


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/13/2009 2:25 PM (GMT -7)   
I'm sorry you are having trouble again so soon. You don't mention if you were put on any maintenance drugs after your surgery and if you were what they are. I actually started to have symptoms of a flare quite soon after my first resection, but at the time, I wasn't on any maintenance drugs. Eventually scar tissue built up and I had to have another resection, and then another. I was finally put on some maintenance meds and have been resection free for 11 years. My personal theory on why CD comes back so soon after surgery is that they didn't get all the microscopic disease out during the first surgery. Doctors try to be very conservative in how much bowel they take out. Chances are CDers will have to have more than one surgery, each time more bowel gets taken out. So they want to leave as much as possible, but that just makes it more likely that a small bit could get left that might be diseased.

My Mom had her first resection in 1965. At the time, the surgeon took foot upon foot of bowel. They didn't even consider the long term ramifications of taking so much out. She had over 4 feet taken out, and didn't need another resection until the mid 80's. When I had my resections, the doctors took inches, not feet, and I had symptoms within months, and resections again in 2 years. So while they spared the bowel, I think the disease was left to do its little magic.

If you aren't on any maintenance drugs, please talk about it with your GI when you have your appointment. I really think that is the key to avoiding quick repeat resections.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Leah64
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 3/14/2009 4:30 PM (GMT -7)   
No, I wasn't put on any meds after as my appointment with my GI was coming up in May.  How soon after your second flare did you have to have surgery again?  The hospital put me on Prednisone and I will try to get an appointment sooner with my doctor. I can't believe you had to have 3 surgeries.  I feel so bad for you but I'm glad to hear it's been 11 years since.  Do you think diet has anything to do with it.  My surgeon told me I could eat anything I wanted after the surgery, but now I'm not so sure that was a good idea.  I was happy about it because I lost so much weight and here I am again on a liquid diet so there goes the lousy 4 pounds I gained after the surgery.  I appreciate your writing back to me.  I'ts so nice to have a support group and so many nice people who care.  thanks again for your help.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 3/15/2009 6:11 AM (GMT -7)   
Leah I too flared right after my resection. I think Zanne summed it up pretty well what happens in these surgeries. My surgery was an emergency done out of the country. I had 12 inches removed. Upon getting back home after surgery I was not on maintenance meds either, the gi said oh you are cured, so did the 2nd one. The 3rd said they are nuts there is no cure and you are flaring. By thw way 7 yrs later he is still my dr. Susie


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/15/2009 6:20 AM (GMT -7)   
Weirdly, my 3 resections were all 2 years and 3 months apart. After the 3rd one, I was holding my breath at the 2 year, 3 month mark! I don't think it is food per se but rather a combination of things. A tiny microscopic area of disease, no maintenance medication to treat that area, and THEN maybe some rougher food aggravating that little area causing pain.

I'm a firm believer in maintenance medication for those who can tolerate it. Sometimes it requires a combination of meds to do the job. But you find what works and you take it every day. I don't understand when posters want to know about stopping medication because they are feeling well. They are feeling well, because the medication is doing its job! Why risk even a microscopic flare that can cause irreparable damage? OK, I will step off my soap box now. wink
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/15/2009 7:39 AM (GMT -7)   
I agree with Zanne 100%, and believe everyone should be on a maintainence med at all times (if they can tolerate them).
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 3/15/2009 9:35 AM (GMT -7)   
Leah64., I am really really sorry to hear about your flare. I am sorry both for you and also for those of us who are hoping that surgery will give them a respite. Now, I have been lobbying my GI for an elective surgery (small bowel resection) in the hopes of keeping the disease in remission and out of the loop for sometime and focus on other aspects of my life. But my GI is adamant about not electing for surgery because he says in 30 years of his experience, the relapse after surgery is 100 percent. In some people it is few months and in some cases people go for decades without any problem. Why this variance I have no idea and they don't also. This simply guessing game.

Last September I was hospitalized for 4 days with a violent flare up, severe pain (controlled only through morphine), unremitting nausea and vomiting, and feeling like I have been hit by a two ton bus. At that time they considered surgery because they were able to visualize obstruction in the CT scan, but the obstruction went away when they pumped me with pred, antibiotics, and anti-nausea.

I am on low dosage of pred 5 mg, entocort 9 mg, pentasa 500 mg two tabs, thrice daily, and prilosec 20 mg (as needed). But I haven't been able to taper off methyl pred at all (in many ways it the magic drug for me). My GI is nudging me to consider remicade, humira, or some biologic. I have been resistant to this idea because of the side effects. So unfortunately, in the CD world there is nothing much available beyond this set of treatments. Prochymal is still in stage III, but very likely will be approved in the next two years.

Beth
Regular Member


Date Joined Aug 2003
Total Posts : 303
   Posted 3/15/2009 1:05 PM (GMT -7)   
Leah - That stinks. :( I had the same thing happen. Colon resection where I was even scoped and told there was no active disease anywhere else - and a couple of months later I had ulcerations throughout my entire colon. Blah. I had been taking Imuran but started Humira and have been in remission since.
Beth
 
Dx in early 1999
Resection in June 2006
Currently on Humira
 

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