More Crohns and Surgery questions

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Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/4/2009 11:38 AM (GMT -7)   
First let me apoligize for my constant surgery questions.(insecurities)
I believe that I have mild Crohns as I really don't have most of the symtoms other than occasional diarreha. I've been in the hospital twice, the first time in 2001 with a partial bowel obstruction and being diagnosed with Crohns. The second time was Sept 2008 with another partial bowel obstruction. I am currently on Asacol as preventive meds along with vitamins and a probiotic. I had a colonoscopy in October 08 and the doctor told my wife that I had significant narrowing in the TI and that surgery was my next best option. I than had a SMBFT in Nov. 08 and that revealed that there was still narrowing in the TI even after being on Pred. since Sept. I went to see my GI in December and he felt that the narrowing was caused by scar tissue and he again said that surgery was my next best option. He felt that the narrowing was caused by scar tissue. I'm currently off the Prenisone for 2 weeks now and have felt pretty good , but I have been on a low residue diet if that helps or not.I really want to believe my Doctor as to having surgery, but it is really hard to because I'm feeling good. Like I said I've only really had diarreha maybe 2-3 times a week since being diagnosed. My big question is am I rushing into surgery too soon? I'll be honest it scares the crap out of me. Doctor said if I don't that the Hospital visits would come sooner that every 7 years by how much sooner nobody knows. It's really tough thinking about having them cut me open than take out some of my intestines and than having to deal with the recovery and the pain. I don't know,maybe I'm a big baby and I need my diaper changed. Any advice would be helpful as the big day gets closer and closer.
Thank you!

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 1/4/2009 12:32 PM (GMT -7)   
Your story sounds very similar to mine. I had 2 partial obstructions about a year apart and then a total obstruction in 2001. I was put on Asacol and steroids for the next 5 years. I was always able to somewhat control my D and it didn't really bother me. In 2006 I had another partical obstruction and a yet another hospital stay so I finally gave in to the surgery. I really just wanted to be off the steroids to tell you the truth. I couldn't function at work and I was tired of not knowing when another obstruction would happen. It was controling my life. I thought after the surgery my troubles would be over for at least a few years. Well here I am now back on predisione and battling this stupid disease once again. The only good part is that I'm not having obstructions that require hospital stays.

The surgery is a big deal, but it wasn't as bad as I had thought it would be. I was in the hospital 10 days and off work for six weeks. I ended up with a hernia, but no other complications. I guess my advice would be to look at all your options before surgery and be mindful that it won't get rid of your Crohn's. I wish you the best.
dx'd with Crohns 1984, I was in  remission for 12 years
Bowel Resection surgery 2006


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/4/2009 3:39 PM (GMT -7)   
Hi Low roughage is definitely easier on the system.As far as surgery a person could wait and see or wait until they obstruct and perhaps a emergency situation. The decision is in your corner and I know I was scarred to .I did follow low residue and still obstructed but the pain was not as bad, so it is not going to correct the narrowing,it does however makes things a little easier. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 1/4/2009 5:22 PM (GMT -7)   
Hi Wolfie.
 
I know excatly where you're coming from, I'm too worried if i'm making the right decision about surgery! Who knows, lets just hope i'm not rolling the ball for more to follow in the future.  I have suffered with so many blockages I've lost count over the years, each time the pain has been excruciating bringing me to my knees for hours until relieved with morphine etc. Right now i'm feeling alot better with my Crohns, I'm down to 3mg of Budesnoide and pain free. With my operation fast approaching on 28th Jan me too are hoping I'm not making the wrong decision.  I think your doctor is right about the blockages coming on more frequent in the future if nothing is done now. I started getting blockages about 15 years ago and mine have def got more frequent in the last 5 years, I suppose I roughly have 1 per year now. Wolfie , how long have you had Crohn's for?

Medication at present 3mg Budesnoide, 200mg Azathioprine, 3000mg Pentasa.
 
Operation due 28th Jan due to narrowing stricture.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/5/2009 4:35 AM (GMT -7)   
Spiceman, I've had Crohns since 2001. I never really had any problems until my last hospital visit in Sept. The problem is that mine (our) decision is irreversible, which makes it harder. I'm going to go through with the surgery even though I'm having second thoughts. Seems like I've been down this road before with Marriage. lol!

spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 1/5/2009 6:20 AM (GMT -7)   

Hi Wolfie.

It surprises me a little that your going ahead with the operation after only having a couple of blockages so far since diagnosed. The main reason I personally think its time is because after my last blockage in March 2008 i've been left feeling very bloated,hard and distended which showed my sticture had worsened  on my small bowel follow through. When I discussed this with my Gi and Colorectal surgeon together they basically said its my decision but told me also that its not uncommon for people to dance around the floor in pain with a blockages and carry on like that for years. Normally after my previsious blockages in the past 15 years I've felt completley fine after the food had passed but this time its very different with alot tenderness and noise from my bottom right quadrant so going on the symptoms and the amount of time I've had of work this years we all come up with now maybe the time for surgery.

And I must say for the best part of 15 years I never really eat a low fibre - low residue food. I suppose I've eaten the same as anybody else, Chinese-Pizza-meat- veg- nuts etc. Speaking to my GI doctors recently they all have told me to cut out nuts-stringey veg-sweetcorn-orange piff-fatty meat etc.

Whatever you choose Wolfie I'm sure we will be both ok , I would like to think with us only having mild crohn's we will never need a second Operation.

Wolfie after your blockage how do you normally feel? How long do your blockages last for? Do ever have any idea what caused the blockage and how intense is the pain?

.
Medication at present 3mg Budesnoide, 200mg Azathioprine, 3000mg Pentasa.
 
Operation due 28th Jan due to narrowing stricture.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/5/2009 7:45 AM (GMT -7)   
My first resection was emergency surgery due to a complete blockage the second one was because I had developed a stricture. I can tell you that I had no clues anything was wrong with the first. But with the second I was always bloated and nauseous and really couldn't eat a whole lot. And my quality of life sucked.

I personally think that surgery should be a last option when all else has failed. I always base my thoughts on surgery now on how bad the quality of my life is. Maybe thats something you should think about. Spiceman I think you are feeling fairly good right now because you are on the Entocort still, but I wonder how you would feel without it. JMHO
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"*

Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 1/5/2009 11:16 AM (GMT -7)   

Wolfie, I know where you are coming from. A surgeon was called in at my first colonoscopy 18 months ago although at that time they thought it might be colon cancer.

I am having my fourth colonoscopy (also have had three sigmoidoscopies) tomorrow and will see where we go from there. I have also seen a colorectal surgeon.

I have a stricture in my colon but no usual symptoms, no blockages and I am sure most people, probably including spiceman, would not even consider surgery. I consider my quality of life to be excellent. But from what I understand is that a stricture from scar tissue is not going to go away and can not be treated with medication. Yes, meds may prevent further narrowing but do I want to be on metho long term? Surgery could probably be put off for some time but how many colonoscopies do I want, (Stepmom's colon was perforated by GI during colonoscopy)? They have to use pediatric scope to get through the stricture and not always successful. Didn't emrose post that they found cancer hiding in a stricture in her husband? I have a surgeon in place, would I rather have planned surgery? Never ending questions??

Still doing the Colyte prep so hoping things go well and we get to see the whole intestine and what is going on.


55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
 Started weekly methotrexate injections 09/22/08.


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 1/5/2009 12:49 PM (GMT -7)   

For me the decision was easy...two hospital stays in 4 weeks because of blockages and several blockages that i just toughed out and stayed home.  In hindsight I feel I made the right cal because the blockages were coming at me so fast...almost weekly ....but if the partial blockages were only happening every couple of years....I would probably have waited.

I know my doctor wanted to wait even after the first hospital stay because he felt maybe we could treat it with meds.

My quality of life and ease of mind is better since the surgery...but I still get nervous if I feel a little backed up or bloated.

 

Good luck


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/5/2009 5:33 PM (GMT -7)   
Spiceman,
My blockages usually last about 24 hours but I do go to the emergency and am admitted and put on Prednisone right away. I did have a SMBFT recently and a live X-ray and I did see the narrowing as the doctor did point it out and that was a 2-3 months after my hospital stay and still on Prednisone. The doctor said that it was a stricture and was scar tissue.He said that No Medication will get rid of Scar tissue. I have felt okay since my hospital stay but not near as well before the hospital and my stomach gurgles alot in the lower right quadrant.I do have pain here and there, but I have been on a low residue diet. I could tough it and hope no emergency surgery is required or have it done now and hopefully never have a problem again.
I do have an extreme tolerance for pain as most of Crohnies probably do. My pain was actually worse the first time in the Hospital, probably because they didn't know what I had at the time.That pain was the worst in my life and definetly hit the "10" scale. This last episode came on slow and I knew what it was right away so we went to the Hospital and they immedietly gave me pain meds and anti vomit meds. the pain hit a 8-9 but the meds really helped.
I guess my question is how do the doctors really know it is scar tissue without cutting you open?The only thing I know is that obstructions are by far the worst pain that I ever experienced!!

I'm like a Yo! Yo! (Up and down)

Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 1/6/2009 7:31 PM (GMT -7)   
Wolfie, I am going to start another thread but briefly my GI told me awhile ago that an ultrasound could possibly show more what is scar tissue. After colonoscopy today he explained further that an internal ultrasound can get through the layers to show you what is there and they then can take further needle biospsies where necessary. He is going to talk to his colleague who sepecializes in that. My husband's business is doing ultrasound on metal which he has done for over thirty years so has a good understanding how ultrasound works.
55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
 Started weekly methotrexate injections 09/22/08.

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