Can your symptoms change after correct diagnosis and surgery?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 7/25/2008 8:42 AM (GMT -7)   
I need help determining if this is just in my head or is actually able to happen.
 
Since 2001 I had been treated for Ulcerative Colitis involving the entire colon, diagnosed from a colonoscopy.  I've only had two short periods of time (each less than 4mo) of remission, the rest of the time being in a constant flare varying in intensity from moderate to severe.
 
I began seeing a specialist (head of department) at Emory in mid-2005.  I've been largely unresponsive to the meds prescribed to me: asacol, colazol, balsalazide and rowasa/cortisone enemas.  I have responded well in the past to high doses of prednisone but the effectiveness of each bump-up after a taper is decreasing and requiring longer periods of time before seeing results.  I responded well to 6MP but when we doubled the dose (and had FAB results) I developed acute jaundice and we stopped all meds to recover and returned to the original, lower dose.  Remicade for 18mo gave me no positive results.
 
I had surgery May 8, 2008.  Originally it was to be a colectomy with a colostomy bag and eventual J-pouch connection.  Once inside, the surgeon found a localized involved area of my L side descending colon and felt that everything else (small intestines and rest of the colon) looked pretty good, so he changed the procedure and only removed the damaged portion of the colon, reconnecting the two ends so I had no colostomy bag, everything remained internal.  (Yay!)
Pathology returned on the removed portion with a diagnosis of Crohn's Disease.
After surgery, I did GREAT!  I was on no meds at all, BMs were firming up, and while a little difficult to pass, they felt good to be almost 'normal' and able to be done after having the mostly firm BM without the numerous trips to keep 'finishing' the original loose BMs I'd had previously.
 
Problems began about 2mo after surgery when my specialist returned me to the 6MP.  I was becoming increasingly nauseated to the point I couldn't eat.  I lost about 10# in two weeks.  Promethezine wasn't working very well.  BMs were loosening and increasing in frequency and urgency.  After a complaint to my Dr, she halted the 6MP and put me on 30mg Pred.  I am still experiencing nausea and having difficulty forcing myself to eat.  I am hovering at around 110-114#.  My usual weight was 130#.
In the past, it always seemed the pred was able to keep nausea at bay AND kick my appetite into overdrive.  I am having none of those benefits right now.
 
Current symptoms include:
Loosening stool with some mucus and blood. 
Gas.  Gas seemed to be a big problem aggravating my symptoms, and I am doing well taking 2-3 Gas-X capsules daily.
My left side abdomen seems tender.  Not distended, but it feels like the colon is 'firm-ish' because it has something in it, but all my movements are liquid-y.  ...this is a new experience for me.  This feeling didn't begin until about 2wks ago.  Last week I had an upper and lower endoscopy.  Upper showed no signs of anything to cause nausea and the lower showed some colitis, no ulcers and I was able to see the stitched part of my surgery site...which looked good (roomy) to me.
 
My surgeon had mentioned at one post-surgery meeting that he didn't understand why (pre-surgery) I had been able to eat at all and not vomit all the time. 
Could this just be in my head?
 
Plans for next week:
I will be having a blood test with results faxed to my specialist.
I will also call my specialist and let her know about the feeling in my left side abdomen.
Will discuss other treatment options to get these symptoms under control; Humira, Methotrexate and Budesonide in place of pred.  It looks like Imuran is another version of 6MP so I don't know if we will consider this one.
 
I have been feeling down, just so tired of dealing with this non-stop for so many years.  Small, bright windows of sunshine that get shadowed by dark clouds all the time.  Come on, I want to see the light at the end of the tunnel and know it isn't a train! 
Husband has been wonderful.  He helped me saddle my horse last night so I could ride.  It had been more than 18mo and felt wonderful.  Well, not for my bony seat-bones, but it was great to be on my horse again. 
I do NOT want to let this control my life.  How can I regain control?
Heidi
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
UC is pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/25/2008 10:16 AM (GMT -7)   
I have had 2 resections due to obstructions. One of my chief complaints since the last surgery is nausea. I take Zofran 8 mg everymorning and 25 mg Phenergan every night. Those help. But what has helped the most is the low residue diet I am on. I also started taking Probiotics and they have helped me have less "deposits" (stole your word PB4) and firmer ones too.

I really watch what I eat very closely. I no longer eat any red meat (hard for even healthy people to digest), no nuts, no seeds and more easily digestible food. And that has helped me.

Maybe trying one of the biologics like Humira or Cimzia will help you. Some people are having success with Low Dose Naltrexone too, but you have to find a GI who will prescribe it. I hope you get feeling better soon.
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.


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 7/25/2008 11:31 AM (GMT -7)   
I do, too.
Do you think your nausea is a direct result of your surgery? I just don't understand how removing such a damaged portion of bowel can make you feel worse, instead of better. It just seems...wrong.
My diet has been rather bland and 'soft' for the past 7 years. I find that pasta noodles treat my 'end' the best. Thank you for mentioning the other meds, I've written them down, will look them up and mention them to my Dr when I call her. I am also curious about your probiotics. I really feel my gas problems are from unbalanced flora in my gut. Can you get it OTC or do you need an Rx? When I mentioned it (probiotics/gas) to my Dr she didn't seem to think it was worth giving any thought. Should I insist? I have bought some yogurt from the store that is supposed to help. Not seeing much in the way of improvement, but at least I feel like I'm doing something positive.
h
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
UC is pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/25/2008 12:51 PM (GMT -7)   
You can get Probiotics in any health store. I just use a Acidolpholus/Lactobacillus I get at a place near my house. I know that another one of our posters PB4 uses one by Nature's Way called Primadolphilus Reuteri and has great success with that. And you get a 90 day supply for like $15 I think (only have to take 1 a day). That one has to be refrigerated, actually have heard that that type is the best. I noticed a big difference when I started using them, it really helped with my bathroom issues. And many GI's are seeing the benefit of them in their patients. We tend to have an imbalance in our systems, especially if we have used antibiotics. It just helps to level out the playing field. Good luck and hope this helps.
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.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 7/25/2008 5:59 PM (GMT -7)   
Heidi,
Maybe you need to give your bowel time to heal. I had a resection in Sept 07 and have only just started to feel the benefits from the surgery. I whinged to a good friend whose mother had bowel surgery and she suggested to me that maybe it had'nt healed properly yet and she was right. I also take probiotics (the same one as mentioned by Nanners that pb4 takes) and I find this has helped me tremendously (firmer BMs, less frequent, less gas). I am also following a low fat diet that was suggested by the same friend who sent me a brochure on, "after bowel surgery", I have only just started this so am not sure how it will go. Good luck with getting some relief soon and keep us posted. Jo

78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 7/25/2008 10:09 PM (GMT -7)   
Thank you. I've written down about the Primadolphilus Reuteri and it looks like I just need to stop expecting dramatic and immediate results and just let it happen. I do now recall, I was told it could take time to see benefits after surgery.
I suppose I conveniently forgot. You know, in one ear and out my... ah-hem!
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
UC is pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 7/25/2008 11:01 PM (GMT -7)   
Hey Nanners, yes the term "deposits" is very fitting when discussing BM's eh :)

I love the primadophilus rueteri made by natures way, it is affordable (in Canada I pay 29.00 for 90 caps and with only one/day needed that makes them very affordable) as mentioned, they do need to be kept cold, but that's their only downfall...they also aid with high cholesterol, lactose intolerance and for women, vaginal health, I haven't had to use lactaid products since taking them daily, my cholesterol is back in normal and not a single yeast infection either...

The other great thing I used, urged by my GI infact, is fibre supplements, those have gotten rid of severe gas and bloating is completely gone with many other benefits, forming up my stools, less "deposits"/day and I can tolerate eating fibreous foods without getting all gassy or bloated..I use Prodiem bulk fibre therapy which is similar to metamucil...infact a few people at the UC forum have discovered how helpful taking fibre supplements daily and indefinitely of course, can be, so there's another thing to add to the list...for CDers that have issues with stricturing or obstructing CD talk to your GI before indulging in fibre supplements...

And any doc that doesn't think much of probiotics needs to get on the ball, there is plenty of research regarding IBD and bacterial over-growth connection and the benefits of taking a good probiotic daily and indefinitely.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 11, 2016 3:10 AM (GMT -7)
There are a total of 2,736,257 posts in 301,364 threads.
View Active Threads


Who's Online
This forum has 151454 registered members. Please welcome our newest member, rmk1990.
134 Guest(s), 4 Registered Member(s) are currently online.  Details
George_, Heatheranne87, Stetsonva, lavendar


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer