To have surgery or not?

[Jenbob]

Hi All,

New to the forums here

I was recently diagnosed with Crohn's in October 2012 after having a very long and miserable year of not knowing what was wrong with me! (I've had symptons for a long time but in 2012 it got alot worse. It was a relief when I was diagnosed though!).

I have been on Steriods since October.. I tried to come off them in December but became I'll again straight away, so was put back on them. I started taking azathioprine whilst still on steriods but have now just finished taking the steriods and solely taking azathioprine. I am still getting a little pain etc. here and there, but managing just about ok now.

On my last check up, when I spoke to my Doctor she mentioned to me I will be on these tablets for a long time (years in fact). I really dont like the side effect of these tablets and my main concern is that I can't have any live vaccinations on them! I was meant to travel to Africa with work however because I became ill, I wasn't aloud the Yellow Fever jab and therefore could not go! I kept thinking there will be another chance soon, but after being told I will be on these tablets for at least another 5 years+, I've become very down knowing I may never get the chance to travel with work and basically what else am I going to miss out on! My doctor has mentioned surgery is an option and it might actually be better for me.. I'm only 23 and it has affected me alot with social life etc. I understand there is risks with surgery and that it may come back eventually, but even if I get just 2 healthy years before it comes back would be great

So, my question is - should I stay on these tablets and live with the tiredness, side effects and miss out any travel chances with work (and just basically just be grateful I don't necessarily need surgery yet), or should I take the chance and have the surgery? I would just like people's opinions and to share their experiences please.

Thanks
Jenna

 

[hthompson631]

Hello
I was diagnosed back in 2011. I have had a bad experience with my GI so I just recently swapped. With this GI I have had a recent colonoscopy and an upper GI with the small bowel. I have a 12Inch stricture in my terminal ileum. I went back to him to find out what exactly we were going to do. He suggested that I try remicade and see if that helps then if not I would have to have surgery. Well like I don't have much time to play around and see. I start school with my job in June andI am going to that class. I also had some biopsies done during my colonoscopy which showed immflamation and scar tissue. Remicade does not help with scar tissue so i would eventually need the surgery. We talked and decided to go ahead and have the surgery. I have an appt with the surgeon on Feb 22.
If it were me I would go ahead with the surgery. This disease is not going to run my life!!!

 

[Susan2]

The problem with surgery in a Crohn's patient is that it doesn't get rid of the disease and sometimes inflammation develops where the surgery has been performed. This can lead to the necessity for a series of operation and, for someone who is only young, this might not be the best option. It is usually advisable to try the various medications now available before making a decision to have surgery, unless it is an emergency, of course.

Jenna, where is your Crohn's disease located and how much is involved? Is a specific area giving you problems? Is the doctor you mention a GP or a gastroenterologist? (You really need to talk to a GI who is experienced in Crohn's) Have you discussed other medications and their side effects with your doctor? It often takes some time to find just the right combination of drugs to suit the individual.

:hug:

 

[Jenbob]

I'm not exactly sure of the name of the affected area itself (I'll try and find out!). Its a specialist I've been seeing the gastroenterology department, but I do recall the area thats inflammed etc is a pretty common area.

I understand it won't cure me having surgery, but my doctor did mention that in a small percentage of people who have the operation, the inflammtion never returned in other areas etc. and she never saw the patients again?

 

[Trish22]

I am about to have my fourth surgery for Crohns,I have yet another stricture at my last operation site at my Terminal Ileium,I met up with the Gastro and surgeon last week who said to me it was a case of when was I going to have this done as my TI was almost closed up.I was fine till they start telling you all the things that could go wrong,and now it keeps playing on my mind.To be honest I am not a spring chicken anymore,I am nearly 59 had this disease for forty years,and beleive me many a time I have wanted to give up,but I have a lovely husband and two precious children that keep me going.
I have a mesh in from having a hernia operation,they also said my op was not going to be easy as I have had the same site opened 7 times,he said he is going to have his work cut out!!!!!!!!!
Thing is I cannot get that awful pain you wake up to out of my mind,I have emphasised to him,how bad it's been the last few times when I have woken and he said they would address the situation,but they said that with the last three crohns op,and my God each one has got worse,for some reason each time they have given me a epidural which I explained has never worked,even the last one did network,neither did it when I had my children,and all I had was a PCA on my wrist that did nothing,I can remember screaming my head off in the ward when I was coming round as the pain was so bad,I have explained to them,and again they said they will try and address the situation.
I,m finding atthe moment I cannot sleep thinking and dreading the thought of this again.
Anyone been through four ops for this,and the really bad intense pain,I know we are all different,but my pain barriers are usually really good,but OMG I think coming round from these ops are just dreadful.
Any thoughts or advice please.
Thanks

 

[rollinstone]

Hi Jenna, sorry your going through a tough time atm, iv never had surgery and my Crohn's is quite mild and well on its way into remission so I can't offer any experiences but I think your young and should give the treatment a solid go before deciding on something so invasive, the side effects of the meds will wear off as your body becomes used to it, and aslong as you keep going for bloodwork you should be fine on Aza the docs will take you off it if it looks like your body isn't coping on it. But personally I'd give it a go for a while longer.

 

[itsme2]

xx

 

[Mark in Seattle]

Jenbob, you need a lot more information than you currently have in order to make an informed decision over whether to have surgery. In my opinion, based on what you've stated so far, it does not sound as though you are a surgical candidate right now.

What dose of Aza are you at right now? If you're at a low dose, you may be able to increase the dose for better effect - but not knowing your dose, I'm not sure if that's a possibility for you or not. Your maximum allowable dose will of course depend on whether you are a full or partial metabolizer of thiopurine drugs. Your doctor should have run a blood test on you to determine this. I'm a partial metabolizer, so I would only be allowed to take about 75mg AZA, if I were not allergic to it. Full metabolizer folks can often take up to 150 mg/day. Your weight probably is a factor in dosing as well. There are still the biological meds and methotrexate to be tried if Aza does not do it for you. And Entocort as well. And Asacol or the other variation of the med in Asacol's class, which I don't recall off the top of my head.

I don't know much about your situation, but I'm feeling like I would try to interview another one or two doctors to find one who will really help you understand the status of your disease (via colonoscopy ideally) and who will treat you with adequate amounts of meds right away. I don't recall how long AZA takes to work, but I think it's a few months.

My opinion, based on the very few details you've provided, is that I would strive to avoid surgery and would hope to find an aggressive medical treatment to put the disease into remission. The problem with surgeries is not only that the disease recurs, but also that the anastamosis (the site where they cut & re-sew it back together) tends to stricture over time as it becomes "fibrotic" (ie - hardened tissue like scar tissue). And by "stricture", I mean that it tends to become narrow, which makes it hard for food to pass through, and then you end up throwing up when the food gets stuck (this is called a "bowel obstruction"), and then you get to go to the hospital and have an NG tube down your throat and steroids pumped into you and laxatives down your throat, etc. Not fun.

Best of luck.

 

[Mark in Seattle]

I am about to have my fourth surgery for Crohns,I have yet another stricture at my last operation site at my Terminal Ileium...........

........for some reason each time they have given me a epidural which I explained has never worked,even the last one did network,neither did it when I had my children,and all I had was a PCA on my wrist that did nothing...........

........Any thoughts or advice please.
Thanks

Hi Trish, sorry you have to contend with so many surgeries and so much pain. I just had my 3rd surgery recently. I explained to the anesthesia team right before the surgery that my 2nd surgery had a problem with the epidural, which required the team to alter the placement of the epi tube in my back in order to give me proper pain relief, because I was totally in pain on my left side and totally numb on my right. So for this 3rd surgery, they plugged the epi in my back before surgery, and then right after the surgery, when I was in the recovery room, they came in and asked me how my pain was, and it became apparent to them that the epi was not in the right spot. They had to remove it right there in the recovery room and put it up higher by about 2 vertebrae, and then that fixed me up pretty good. I received outstanding care from this anesthesiology team. It took 4 people about one and a half hours (or so it seemed in my stupored state) to roll me into this position and that position and probe for the right spot and get my feedback, etc., until everything was just right. I was incredibly appreciative for their persistent efforts to get the job done right as quickly as possible. A couple days later, I noticed that the top 80% of my pain area was well controlled but the bottom 20% was not controlled at all. They told me that moving the epi a little lower would not be appropriate, but instead increasing the flow rate of the pain med into the epi would take care of the problem. So they turned it up and they were right - it worked. However, once my urinary catheter was removed, I had to ask them to turn the meds down a bit so that my bladder could start functioning on its own (too much epi meds will prevent your bladder from functioning, and then it just fills and fills with fluid and will the bladder burst at some point or back up into the kidneys, I don't know). I would request to have a face to face appointment with the head of your anesthesiology team before your surgical date arrives, so they can hopefully review your records from your prior surgeries and see where the epi was placed and how much and what kind of meds they had you hooked up with. I was hooked up to dilaudid with some sort of numbing med. I would really speak up for yourself about getting a solid review of your pain problem performed and a solid pain plan in place. I would suggest relating my story to your doc's about how the pain team came right into the recovery room and fixed up my pain, rather than waiting a day or two for me to scream and push the call buttons. You deserve a team that will give you the best possible treatment and attention. These days I think that patients will often be treated in kind of a second class manner unless they really speak up for themselves and articulate their concerns and request that action plans be designed prior to surgery.

Best of luck.

 

[rollinstone]

Sounds like you've had a tough time to say the very least mark, I hope things pick up for you soon mate if they Havnt already, all the best.

 

[leithcote]

I think the decision to have surgery is a personal one, and with Crohn's there simply *is* no right or wrong answer. You just have to try (and do) what is good for YOU(!). And make sure that you get all the information and support that you need to make such a decision.

I personally opted for surgery - and as it turned out this was by far the right option for me. My surgeon essentially said that no amount of drug intervention could have sorted out the mess my terminal ileum had gotten itself into(!).

I am a year post-surgery, and have, up to just recently been remarkably well. I am having some complications - but from the disease rather than the surgery. It isn't unfortunately a "cure" for all - but I don't have any regrets about choosing this option.

Happy to answer any questions you may have about a surgical option.

Tony (Leithcote)

 

[Trish22]

Thanks so much Mark and everyone, I shall be taking a copy of this with me so the aneathatist can see it,hopefully they can sort me out like they did with yourself
Many many thanks

 

[leithcote]

NB: epidural = fantastic pain relief. Totally seconded!