Re-section yay or nay

[Ozboz]

Hey guys going to see a new GI doc on monday finally after the last guy was useless and I had to suggest meds to him been told by several people and the ibd nurse at the hospital that he"s really good and knowledgeable. I have been considering a resection since i talked with my ibd nurse last I was wondering would i get all the benefits she claims it almost sounded like she was trying to sell me the surgery option . But is it teally.as good as she makes it out or are there other risk complications like tearing at the site of resection or the other part of the bowel gets inflamed feels like a lot of what ifs at this point

 

[Ihurt]

I myself have not been dx with crohns, but am having gut issues for over a year and half, almost 2 years now. The only surgery I ever had was a c-section and an exploded tubal pregnancy( I almost bled to death with that one).

I guess in my opinion nobody should ever have surgery unless it is absolutely nessasary( and sometimes it is). I remmeber my Gastro doc that I use to see before he moved away out of state, well he told me that one should asolutely avoid any kind of abdominal surgery( especially involving the intestines) if at all possible. He said that once you cut into that tissue, you will automatically grow scar tissue and this can later on make more problems which would require even more surgery and it becomes a viscious circle you are in.

Now not everyone who has surgery is going to have this happen. It also depends on the individual. There are people on here who have had resections and they are good for a long time. But there are risks invloved. I honestly would RUN from any doctor or nurse who was pushing surgery, especially if there are other avenues to pursue yet. Have you tried all the drugs available? I guess it all depends on how bad off you are. I mean do you have obstructions or severe stricutres??

My final advice would be to take surgery into consideration, but also make sure it is absolutely nessasary ( even if you have to get a second opinion), I mean no surgery should be taken lightly as there are big risks invloved. Good luck with whatever you decide and I hope you can get some relief.

Hey guys going to see a new GI doc on monday finally after the last guy was useless and I had to suggest meds to him been told by several people and the ibd nurse at the hospital that he"s really good and knowledgeable. I have been considering a resection since i talked with my ibd nurse last I was wondering would i get all the benefits she claims it almost sounded like she was trying to sell me the surgery option . But is it teally.as good as she makes it out or are there other risk complications like tearing at the site of resection or the other part of the bowel gets inflamed feels like a lot of what ifs at this point

 

[shamrock15]

I'll put my cards on the table - I have had four resection surgeries, and an additional two for putting an ostomy in and then reversing it. I have had mixed results - first one was good for 5 years, later ones only good for two years. I didn't have remicade to keep things under control at the time, and I had a very active case of crohn's. If you are getting serious scarring and blockages, it may be required. I know with one of my previous GI's, I would seriously question any recommendation. You need the trust, or possibly a second opinion. The surgeries can do a lot to relieve symptoms, but you will likely require ongoing care.

 

[hainman]

I had resection a few years ago and initially it was great but 6months down the line the disease came back aggressive and i have had problems ever since,only thing that has kept me together was the steriods but they caused their own issue's.
Im due to see the specialist next week and looks like more surgery coming my way with possible stoma....
Hope you get sorted

 

[Ozboz]

Thanks guys lots to think about

 

[LisaL]

I had a resection about 5 weeks ago. I too had been considering surgery, and had two doctors give me different opinions. In the end I ended up with emergency resection after a perforation during a colonoscopy. I found it hard to chose the surgery option, even though I was leaning in that direction.

My personal GI had been encouraging surgery. My second opinion doc, a big wig in LA, said try medication instead. I was, and still am, reticent to begin biologics. What we ultimately learned was that I was having partial obstruction (minor) and pain from scar tissue that had built up over 10-15 years. But, every doctor I spoke with (GI, surgeon, colo-rectal surgeon) told me that there was not going to be one right answer. They all said that ultimately either choice could be right.

I hope you are able to come to a decision soon, and that you are able to feel better soon. Take good care of yourself.

For me surgery was the right call...I would have had it eventually. I found the first week of recovery hard but not so bad after that. I would encourage you to get as much information about your particular situation as possible. I had a CT Enterography which gave my docs a pretty good picture of what was going on.

 

[Jennifer]

Resections are generally used when medication isn't working/enough. Its common for the disease to come right back at the resection site so keep that in mind as well. We only have so much intestine to work with so if you want to have surgery make sure its an educated decision. Many people have great success with it (like myself) yet others have issues in less than a year after surgery. If its scar tissue than meds cannot help that but perhaps a strictureplasty could be done instead if possible.

Mine was scar tissue and inflammation and the meds I was on at the time (Prednisone, Entocort, Asacol and 6MP) weren't getting the inflammation under control so I had surgery to avoid further complications which put me in a very long remission. Remicade and Humira were not around at the time for me to try. Chances are my GI would have tried those before opting for surgery.

 

[Ozboz]

This is my situation here in Australia we have 2 health care symptoms one is public and virtually free and the other is private which is expensive and is cvered by insurance but if your on a pension likeme you can use the private system and get a rebate from government usuallt anout 70% of the consult fee.

Well the public GI says he can't do anymore and is pushing the surgery so I went and got an opinion from a very well respected doctor in the private system and he said he can do way more than surgery then I got better and he retired unfortunatley the guy who replaced him or took over the practice whatever is a total putz that dowsn't even know what meds are out there.

So i went back to the hospital where the public doc is and guess what surgery so know I found another good doc private everyone says he's excellent but the public guy laughed and said I'm wasting time getting more opinions and he wants to book me in for surgery I told him my body and I want to wait so thats why I'd like opinions on surgery so I have some idea of what to talk to with the new doc if he suggests it

 

[cleuger]

Ive never had surgery but I was told by a surgeon that back in the day they did surgeries at the drop of a hat since they didn't have the meds they have now. I was told they dont like to do the surgeries these days because you end up needing another and another and so on. I currently have a stricture and was told by the Surgeon they will not be doing surgery just treating with meds just for that very reason. Good luck I hope everything works out ok for you.

 

[Grumbletum]

I guess it depends Oz, if you have any particular complications, as has been mentioned before, such as strictures, fistulae etc that are not going to be resolved with medication. Last year I was referred by a GI to a surgeon for a resection. The surgeon himself said that he thought I hadn't exhausted the meds route, given my symptoms and referred me to the GI at that hospital who put me on Infliximab.
He also said that they like to avoid surgery if they possibly could due to possible complications. A year later, I had to have a resection anyway because of a recurring fistula. But I think it was worth giving the meds a shot.
It's a rock and a hard place sometimes - risk the side effects of meds or risk the side effects of surgery.

 

[Mel13]

Hi Ozboz,

I totally understand where you are coming from. I thought I'd share my experiences with you- they might help you in making your decision.

I was diagnosed with crohns in 2007 and have been progressively getting worse since then. I've been on and off prednisone more times than I'd like to admit. I tried entocort too but it wasn't as successful as the prednisone was for me.

I've had many visits to the hospital over the years due to flare ups and these repeated flares led to stricturing in my duodenum and terminal ileum. Thankfully, my duodenal stricture improved but I've not been so lucky with the one in my ileum. Whilst my gastroenterologist put me on Imuran a few years back, I was dreadfully ill on it and turns out I was allergic. This scared me off immunosuppressing drugs and I refused to try another in fear I'd react the same way.

Well, whether this was the right decision or not..I can't really tell but my stricturing in my ileum got to a point this year where I had quite a significant obstruction. I was told no amount of drugs was going to help that and surgery was my only option. Plus, I was now so steroid dependent that my doc said that's another reason why surgery would be needed.

And so, here I am, 2 weeks post operation: my first resection to remove 15cm of my ileum. I have to say its been a tough journey. Whilst the surgery itself went well, recovery has been a roller coaster. I had significant fevers for a week after surgery which was caused by an infection in one of the wound sites. I felt so terribly unwell. But heavy antibiotics eventually knocked that on the head.

Moving around is a real challenge although I find its getting better as each day passes. After a week of being at home, I was getting terrible pain and nausea in my stomach so my surgeon admitted me back into hospital yesterday. I've had a number of tests but no results just yet.

The hardest thing with all of this is how incapacitated I have felt since the surgery. Ive needed help to move around, the wound sites have been quite painful for me and i feel nauseous every day. My appetite is non-existent although i can eat solids now. I won't lie to you- these last few weeks have been very tough and I have found myself reduced to tears on more than one occasion.

Has it been worth it? Hmmm...I can't answer that just yet. There have certainly been times over the last few weeks where I wished I hadn't had the surgery BUT I didn't have a choice. My surgeon said the obstruction was quite bad and I can honestly say I'm pleased that I have that danger removed from my body now.

My recovery so far has been tough but I know people who have not had any problems so its really an individual thing. Just be aware that there are risks with this surgery and take a realistic approach to your decision. Sometimes I wonder if I wasn't so realistic in my approach- I had been speaking a lot to a friend of mine prior to my surgery about his own operation and he sung praises of his surgery/recovery. I was so buoyed by this that I think I assumed my own surgery would be equally as smooth. Of course, it's been quite the opposite and this has impacted on my emotional state.

If you like, I will keep you updated as I continue to recover. I know that reading the surgery stories on here has helped me immensely. Please know that I don't mean to scare you off surgery by sharing my roller coaster journey- again, I just wanted to share my experience with you in the hope it may help in some way. I wish you all the very best in your decision making as I know it's not always easy.
Xx

 

[Ozboz]

Thanks for that mel13 I too was diagnosed in 2007 and my journey has beenn somewhat hard aswell been on steroids and been to hospital a few times going to see new doc tomorrow see what he says

 

[MojoRisin]

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NT] G'day Oz lm from Perth West Oz & I have had a resection & mine was brought on from a Crohns Flare up & it perphorated my small intestine & the Surgeons at Fremantle hospital REMOVED 7 FEET of my Large & small intestine & I also lost my Ilocceal valve , & I havnt had any signs or symptons from crohns , Although l do only take 8 x 30mg tablets of Codien to stop my Chronic Diahorrehia from the loss of the valve if the Codien didnt work l wouldve had too shit in bag for the rest of my life, The Gastro Specialists over told me that they wont perscribe me "Any" crohns treatment as it may course :thumleft:the Crohns to return & I had my resection 1st August 2011 & I get a Colonoscopy every 6 months so they can monitor it. .. So I guess Im a Success story to a Resection & Our Public Health System is 500% better than antwhere else in the world