Are you glad you had Surgery?

[jaggartini]

I've had a hell of a flare the past week (see my sig) and don't have too many options left to keep my body from behaving. Either have to try MXT or surgery (removal of bowel - either internal pouch or external, not sure this is all the things I need to start thinking)

For those that have had surgery, has it freed you a little. Has your disease gone and the pill popping stopped?

Do you feel better for doing so? (I know there is recovery time so this is down the track, how do you honestly feel?)

Socially are you coping?

What issues have you had?

I'll probably have a billion more questions but thought I'd start somewhere.

Thanks heaps.
g

 

[LOSTnut]

Life saving and life changing -- I never thought I could cope or live with a bag but life has 200% improved in my case. I had a long and difficult recovery of nearly 5 months but now everything is great.

I found an awesome job that I really like and energywise I float through the day.

After the initial shock, I can honestly say that I would do it again. I have a temp Ileo but right now I don't even think about a reversal.

 

[CyCrohn'sGuy]

Personally, I didn't have a choice when it came to surgery - it was either that or die! After years of beng in pain, in and out of A & E, blockages, fatigue, stress, vomiting, diarrhoea, my bowel then perforates whilst at work and peritonitis sets in. Following successful surgery and during my recovery thrombosis paid a visit with a nice blood clot in my lung.

I'm thankful for the surgery and that I am alive but it is not without it's problems. I am not in pain anymore, I can work and play (to a certain extent) and enjoy going out ocassionally but I have to force myself to do these things. I still get diarrhoea, grumbling intestines and fatigue but it does not compare to the pre-surgery symptoms.

I must admit I am not the same person I was before my op. I am not very confident in social situations anymore and tend to shy away from them. It's the same with work events. I simply don't show up. The spark I had is not there anymore.

I am on Humira 40 mg every two weeks to keep the Crohn's in remission as well as blood thinners for the rest of my life.

I pray things go well for you and you get to feel better real soon. Let us know how you get on.

 

[LOSTnut]

Oh, sorry, my surgery wasn't selective either. I had a laprascopic resection that came undone and was followed by emergency surgery, ending up with the Ileostomy.

I am currently in complete remission and even stopped the Asacol. Just taking the usual supplements like Vitamins, Calcium and pain meds for my lower back pain.

 

[vonfunk]

I don't regret it.

I saw it as a preventative solution. I was pred dependent, I had been on steroids for 3 years straight, it was the only thing keeping it under control. Had I stayed with that treatment I would have developed diabetes and osteoporosis in the next couple of year. In 5 years i would have hit the 8 year mark in which my chances of cancer skyrocket. Given the state of my colon the doctors would have never found the cancer due to the amount of polyps.

I'm off the steroids and everything has begun to even out, out of whack hormones, face isn't as fat

 

[glum chump]

Count me in as part of the 'surgery saved my life' crowd. Before surgery, life was a living hell, and with my MS, I needed to get at least one of my diseases under control. I had exhausted all conventional and non-conventional treatments, including all available drug trials. There wasn't many options left, and I wanted to have surgery while it could still be 'my decision.'

I have a permanent ileostomy, and six months in, I don't even think about the fact that I have a bag. Changing the bag (which initially seemed daunting) is easy-peasy and life is motoring on. I can finally eat all the foods that I'd been missing, and I'm not taking any more crazy Crohn's meds.

Even with all the complications I had with the surgery, I wouldn't trade this feeling of freedom for anything...

Good luck with whatever decision you end up making...it's not an easy one!

Kismet

 

[braveheart]

I think that surgery is not an easy experience for the patient, that's what it is the last resource.

I've had two surgeries so far, to remove strictrures in the small intestine and I felt much release after surgeries.

 

[bigtruck]

Hi there I had an resection and temp ileostomy in 95 reversal after 3 months. Fast forward till this year I had 30cms resected in sept as well as having 2 psoas abcesses drained. I now have a high output ileostomy which is causing problems although
My surgeon hopes to reverse it very soon. Fingers crossed so I can get out of hospital. So sometimes surgery is the only way no matter how much u try to avoid it.

 

[Misty-Eyed]

I personally love my bag. Had it for 7 weeks so far and hardly felt ill at all before hand so was worried i'd end up regretting the op. I wish I'd had it done years ago when I was really ill but I think it's very important to be mentally prepared for it. If your head isn't in the right place then I can imagine coming to terms with it is harder after the op.

Saying that, methotrexate worked well for me till I had to stop taking it. I'd give it a go. If it doesn't work you can always have the op. It kept me well for a good few years. It may also give you more time to think about what you want to do if and when it stops working.

 

[jaggartini]

Michelle

Saying that, methotrexate worked well for me till I had to stop taking it

can I ask why you stopped taking MXT?

I've reacted to 2 meds now in the past year Immuran and Cyclopsorin. I'm never been allergic to anything else med or food wise so i'm finding it odd my body is deciding not to partake. I am almost convinced I'll react to MXT as well, that and my GI doesn't like to use it.

 

[Sarahjh]

I would have surgery again, happily. The recovery time was tough but I got through it. But I've been in remission ever since x

 

[Nyx]

Not sure how I missed this thread, but glad I found it now! I had surgery in December 2009 when I perforated my sigmoid colon and distended my bowel and now have a permanent colostomy. The surgery wasn't tough (being an emergency was a blessing for me because I'm a worrier and I'd have been in a right state by the time it rolled around otherwise). Recovery was hard, and I had complications - 2 blood clots in my lungs, and a blood infection. But even with all that, I don't regret it for a minute. I'm in remission, not on any drugs at all, and I can eat and play and work and do whatever the heck I want without worry. No one knows I have a bag unless I tell them. And I spend much, much less time in the bathroom these days...that's always a good thing!!!

 

[Misty-Eyed]

Michelle can I ask why you stopped taking MXT?

I've reacted to 2 meds now in the past year Immuran and Cyclopsorin. I'm never been allergic to anything else med or food wise so i'm finding it odd my body is deciding not to partake. I am almost convinced I'll react to MXT as well, that and my GI doesn't like to use it.

Lol well I took it for a a couple of years and everything was fine. Then all of a sudden my liver enzymes went through the roof so they took me off it. I had an ultra sound on my liver and everything looked fine and it was soon back to normal. Might sound a bit scary but I was on it for agess with no probs. After my liver recovered they are worried about it again now and that may just be due to me taking paracetamol (tylenol) after my op.. So I may just have a sensitive liver. Also, just because you've had one reaction to one med, doesn't mean you will for all. I was on imuran for years and my liver was fine. It just didn't work for me. Was on cyclosporin for ages too but I had more cosmetic side effects with that.

 

[ameslouise]

Yes! I am glad I had surgery. Life is great now. I go most of the day without even remembering that I have a bag. It's just a part of who I am. For me, a vain fashionista, the only downside is that I sometimes look at clothes and sigh, thinking "I wish I could wear that." But that is NOT to say that l can't find plenty of nice, hot, hip, fashionable stuff to wear.

Going thru surgery is tough, and recovery is a bitch. It takes a long time to recover and get your energy back. Don't underestimate how much it will affect your constitution. But IMO, it is all worth it to get your life back.

Good luck! Making the decision is never easy. I feel "lucky" that the decision for surgery was always made for me because I had no options left. I now think that surgery should be considered a viable treatment option, not just a last resort.

- Amy

PS Good luck with the metho. I was on it for 6 months and found the side effects to be oppresive.

 

[tiloah]

I am so, so glad I had surgery. I spent months in agony wishing my doctor would bring it up as a possibility and when he did I jumped at the chance. I guess that's a product of just how bad it was before I had it. I can't even put into words how much my quality of life has improved post op.

 

[Crohn'sFor Life]

Removing my colon was the smartest thing I have ever done! I love my bag and the fact that I don't take meds anymore. No more colonoscopies, no more Golytely. No more mad dashes to the toilet.

 

[nogutsnoglory]

I am still pretty fresh out of surgery but if I continue feeling better and have no issues moving forward im happy about it. It wasn't elective since I had so much obstruction it was a pseudo-emergency.

 

[rob101]

I had no choice in the matter as it was emergency surgery due to peritonitus, after a perforated bowel , so no I wouldn't say I was glad to have had it done ! but was told if I hadn't I might of died.Which is a pretty sobering thing to hear.Still getting pain when sneezing /coughing around the scar area nearly 5 months after surgery which I dont think is normal.

 

[Scifimom]

I dont have colitis, I have Crohns. I had an emergency apendectomy which proved to be Crohns and it turned to bowel recection. I hated it. I still do. I regret every minute of it. Due to massive bleeding, the doc did not remove all the affected areas of my bowel. I flared again within less than a year and I had to go on Humira. Before surgery I had zero symptoms. After surgery I have chronic diarrhea (Humira did not take care of that) Gurgling, fatigue, rush, a HUGE scar on the right side of my belly which has deformed it. I also developed intolerance to milk (I am not lactose intolerant generally). It took me 12-15 months to fully recover from surgery and I dont know what will be the long term effects. If I touch around the scar I can feel the scar tissue.

So yes, I dont care if it was an emergency or the surgeon was a dickhead or shit happens. I still regret having surgery.

 

[jaggartini]

A tad late but thanks for your replies.

It's been almost a month since I posted this and I'm so happy to read stories of success and happiness after surgery. If i have it my way it will be a 'non emergency surgery" so can have my health and strength as best as i can get it so recovery will hopefully be better.
I'm totally over medication, I can't be bothered trying anything else so surgery it will be and will have to trust that the lord is going to be kind with me and let this option be a good one.

 

[ekay03]

Yes, I had 10 years remission!!

 

[tiloah]

A tad late but thanks for your replies.

It's been almost a month since I posted this and I'm so happy to read stories of success and happiness after surgery. If i have it my way it will be a 'non emergency surgery" so can have my health and strength as best as i can get it so recovery will hopefully be better.
I'm totally over medication, I can't be bothered trying anything else so surgery it will be and will have to trust that the lord is going to be kind with me and let this option be a good one.

I hope you have the best possible outcome with your surgery.

 

[LOSTnut]

I hope you have the best possible outcome with your surgery.

Ditto!

And, good luck!

 

[spingirl]

I wish you much success with your surgery and pray for a speedy recovery. Please post again when you are up to it and let us know how you made out. I will be curious to hear if you are happy with your decision.

 

[Rain]

cycrohn's guy..I have a bag for a couple more days and I know how it is to be embarassed. I didn't go out much either and would have to wear bigger shirts. It sucks, but your a very attractive guy so you shouldn't worry so much.

 

[Rain]

jaggartini, good luck, and keep us posted!

 

[CheerBear12]

I didn't have a choice mine was life saving after my bowel perforated after only 4 months of suffering with the disease. Can't believe how bad the flare up just wouldn't stop even with steriods and 1 infliximab. I feel great now but I had a very long and painful recovery of 3 months until I do things for myself. I'd rather have this than be in a box even tho I didn't want op. I'm due to get my rectum and anus removed in may another long recovery sigh not looking forward to any of it tbh

 

[Heather_D]

I am feeling so much better since the surgery. I still take Apriso as maintenance med to hopefully keep me in remission longer, but it's only 4 pills per day that I take in the morning. Prior to the surgery I was taking 8 pills per day and I was on Cimzia; so I was giving myself injections also. My surgery wasn't an emergency, so it wasn't necessarily life saving (yet), but it was life changing. I was basically down to a liquid diet and still lived everyday in pain. Surgery gave me my life back. I couldn't really do anything, just working (and I have a desk job) took all the energy I had for the day.

I basically had two surgeries at the same time and I still have some cramping sometimes when bowels pass the rectosigmoid resection, but it is still so much better than it was. My surgeon told me that I might have a different 'feeling' post surgery and I would just have to wait and see. Socially my life got a lot better post surgery since I couldn't really do anything for months prior to it since I was in so much pain. I also seemed to recover pretty quickly, so I know that helped, but I still think even if recovery had been slower it still would have been life changing in the long run.

Today I am 9 months post surgery and 8 weeks pregnant, so I'm really keeping my fingers crossed that there are no issues over the next 7 months, or after. Guess only time will tell. My full story is in the sticky forum. Wishing you the best and hope you find relief soon.

 

[CheerBear12]

Congratulations hope it all goes well for you keep us posted on your progress and glad the op has changed your life for the better x

 

[luvmywife]

Removing my colon was the smartest thing I have ever done! I love my bag and the fact that I don't take meds anymore. No more colonoscopies, no more Golytely. No more mad dashes to the toilet.

You stated that you don't have RA because u have uc can you please expand on that. Bc my wife's RA dr threw his hands in the air and is not sure what is wrong with her.

 

[2thFairy]

It's been almost a year since total colectomy and I don't regret a minute of it. Life is sooooo much better now!