Surgery or Drugs?

[Starr<3]

Hey guys,

I'm new to this forum so I guess I should tell you a little about myself first. I was diagnosed with Crohn's Disease when I was 9 and after that first flare was sent into remission I was mostly symptom free and on Pentasa until last year. At this time, the pain was bad and I was put on prednisone for a few months until things cleared up. For 5 or 6 months I was feeling great again. Sadly, about a month ago I started having alot of pain again and strangely started having alot of pain while urinating as well. I ignored it for a little while until it got to the point where I knew I couldn't ignore it anymore so I saw my GP. I turned 21 last Friday. I went to see my GI today and was given news that I don't know how to process: I have a possible fistule between my small intestines and my bladdar. This brings me to the decision between having surgery to fix it or taking either Remicade / Humira.

I think I probably want to avoid having surgery if its not completely necessary. However, I know that Remicade and Humira are strong drugs that I may have to be on for the rest of my life. I have no idea where to turn or what to do. Does anyone have any advice? Are any of you taking these drugs and finding them good/bad? Has anyone looked into any natural remedies for this (I am seeing a naturopathic doctor next week to see what she has to say)?

Any and all help would be appreciated

 

[Jennifer]

Hi Starr<3 and welcome to the forum!

Have you had a Cystoscopy (scope of the bladder) to confirm or deny the fistula? Have you had any tests done recently (none are mentioned so I'm not sure if your GP is going by your symptoms alone)?

We have subforums for both Humira http://www.crohnsforum.com/forumdisplay.php?f=59 and Remicade: http://www.crohnsforum.com/forumdisplay.php?f=58 So feel free to check those out.

Everyone has mixed results with medications so its hard to say if you would do well on either or not. I've tried both to help maintain remission but it didn't work out so I'm on Methotrexate now. Yet there are many people who have been on these meds for years and have done very well on them.

I've never had a fistula. That's something I would want healed as quickly as possible though. We have a subforum on Fistulas, Fissures and Abscesses as well here: http://www.crohnsforum.com/forumdisplay.php?f=76 Feel free to look around and maybe make a new thread asking members there if they know of any other treatments.

"Fistula Treatment

Treatments for fistulas vary depending on their location and severity of symptoms. Medicinal treatments include Flagyl (an antibiotic), 6-MP (an immunosuppresant), or Remicade (a TNF-inhibitor).

An enteral diet may be prescribed for enterovaginal, enterocutaneous, and enterovesicular fistulas. An enteral diet is liquid nutrition that is taken by mouth or given through a feeding tube. These liquid nutrition formulas replace solid food and contain vital nutrients. With no solid food there is less stool passing through the anus, which helps the fistula heal and maybe even close.

Fistulas that don't respond to any of the above therapies may require surgery. If the fistula is in a healthy part of the intestine, it may be removed without taking out any part of the intestine. If the fistula is in a very diseased part of the bowel, a resection may have to be performed.

A resection may result in a temporary ileostomy. Stool is diverted through the ileostomy, giving the part of the intestine with the fistula time to heal. This type of surgery is most often done on rectovaginal or enterovesicular fistulas."
http://ibdcrohns.about.com/cs/relatedconditions/a/fistula.htm

Keep us posted.

 

[Danu]

Hey Starr, I'm sorry you are going through this...fistulas are mean little beasts. I can share my story/perspective and hopefully it will help. I developed a perianal fistula about a year ago. I didn't know what I was dealin with and it got huge and painful. My colorectal surgeon placed a draining seton and I still have it and it doesn't bother me at all really.

Here's where the med decision came to play. About five months later I started having more inflammation in my anal area and developed what I really think was the start of a new fistula on the opposite side of where the seton is. I hightailed it to my doctors and they recommended humira due to the progressing fistula issue. They informed me of the risks, etc. For me, the inflammation in my rectum was out of control. I weighed the pros and cons. Yes, there is a risk for developing cancer. But with the constant inflammation I am at risk for developing cancer anyways. Plus, my quality of life was declining. Pain in my bowels, pain and discomfort in my anal area. Etc etc.

So, I took the plunge and am now on humira. The inflammation in anal area is gone. The second fistula has healed. I still have the seton but that's ok. My disease is in remission I think...but I am also 6 mo. preg so that may be helping.

Anyways, hope this helps. To me, it's a pretty serious drug and the decision to take it is not a easy one. Good luck

 

[DustyKat]

Hi Starr<3 and :welcome:

I'm sorry to hear that the Crohn's has reared its ugly head again.

First up I will tag Grumbletum into this as she has had the same issue that you are now dealing with.

I don't have Crohn's but both of my children do and they have Ileal disease too, both have required surgery for complications...

I will give you a shortened version of their stories and that way it will explain how I feel about meds and the reasons for surgery...

My daughter went undiagnosed for 18 months and was only diagnosed during emergency surgery. She has had excellent results thus far, 7 years remission, but for a few years after I did wonder what her life would be like if she had had the opportunity to do medication first...

Then four years after her surgery and diagnosis my son was diagnosed. As a result of her legacy he was diagnosed very, very quickly on the back of next to no symptoms. To be honest even with Sarah's positive surgical outcome I would have been happy for my son to go the medication path, including Humira which was on the cards if he didn't respond to initial treatment. As it was he developed complications about three weeks after diagnosis and that complication was a fistula and abscess. Now the thing is, every GI and surgeon we saw all agreed that the biologics were not an option for two reasons. Firstly, he had an abscess, which of course is not your issue and secondly, fistulas that originate in the small bowel are notoriously difficult to heal with biologics. They do work very well for perianal disease but not so much for those sort of complications in the ileum. Now that is not to say that they never work for Ileal fistulas so if you wish to avoid surgery I would give it a go.
Matt has also been in remission since surgery, so 2.5 years.

Also have a read through this thread:

http://www.crohnsforum.com/showthread.php?t=40792

Good luck and keep us posted on what you decide and remember, there are no wrong decisions here just different ones.

Dusty. xxx

 

[emma turner]

Hi there

Like some of the others i've never had a fistula but have been on Humira AND remicade. Both did make a difference for me and took away some of the inflammation in some areas where it was really inflammed and i told myself i would try any drugs if it meant i didn't have to have surgery.

i am only 19 years old and ended up having the surgery because i couldn't deal with the pain anymore... i now have a stoma for 3 months and i'm a month in with no pain! PRAISE OUR LORD <3

i guess what i'm trying to say is... may be try the drugs if they don't think it NEEDS surgery right away because you never know how you'll be healed- in saying that, if the pain gets too sore and you just can't deal... then surgery is not giving in. I learnt that the hard way :\

i hope this helps! My prayers are with you xx

 

[evescott]

Hey!

I can appreciate how hard it is to make the choice as someone who's had to!
I had 3-4 persistent fistulas that just wouldn't stop! I was on Remicade for them for over a year, I found it helped for a while but a few weeks before I was due my next dose, they'd become bad again.

I had a seton inserted into one of my fistulas, which does help it drain which may help with the pain a little as it did for me!
Unfortunately in my case none of these options were a fix and I had to have my colon entirely removed due to the severity of my Crohn's & the fact since I had been diagnosed had not been in remission once!

I think though, that the Remicade is a good initial option, it helps all round, particularly if you suffer from joint problems too & unlike surgery you can change your mind and choose the other option as any point.

Good luck!

 

[Grumbletum]

Hello Starr and a big welcome to the forum. I too am really sorry to hear that your Crohn's has flared up again. Like Dusty has mentioned, I had a fistula from my small bowel to my bladder. It took a while to get a diagnosis of Crohn's as my main issues were with my bladder - repeated UTIs etc.
I know the symptoms can be very distressing and yes, it's a lot to get your head around. I'll be honest with you, Starr, once it was established that I had the fistula, Dusty warned me that this type are hard to heal with meds and she was right.
My local GI referred my to a mainland hospital for surgery. I'd been on Pred for 6 months and Azathioprine( Imuran ) for 2, with antibiotics on and off as I had an abscess associated with the fistula. By the time I got to the mainland, I'd started to feel a lot better and they confirmed there that the abscess had shrunk and the fistula possibly closed and advised me to try Infliximab ( Remicade ) as there were still signs of inflammation in the small bowel.
I had three infusions and felt very good on them and had a colonoscopy which they felt showed I'd gone into remission, so took me off the Infliximab. But a few months after stopping it, I started to get bladder issues again and an MRI confirmed the fistula had opened again.
You're young, I know, and the thought of surgery is frightening, but having it has made such a difference to me. I thought I was better after the infusions, but it was only after the surgery that I've felt back to normal again. When you've been ill for a while, you forget what normal really is.
What are your doctors saying? It sounds like they've given you a choice, but are they strongly recommending one treatment over the other?

 

[Starr<3]

Thanks everyone so much for your input here! You've all helped a little in my decision making process.

Yes, Jennifer, I have had one test that has lead my doctor to believe that I have this fistula. I had a CT scan done which showed that my small intestines were right up against my bladder and that the wall of my bladder touching my intestines has thickened. It did not pick up the fistula but my doctor thinks there is a pin hole there due to the cloudy-ness of my pee and the fact that I can sometimes feel air bubbles when I pee. However, I have not had a Cystoscopy.

Thanks DustyKat and Grumbletum for the heads up on the fact that biologics don't usually work well for closing ileum fistulas. My doctor did not mention this. I want to bring this up to him when I call him today. So glad to hear that surgery worked for your children, DustyKat, and for you, Grumbletum. I have never had surgery for my Crohn's though seeing it has only been active for a little over a year again so I'm not sure I want it to be my first option given that my doctor is recommending I try the drugs first. However, your stories have taken my fear away if the need should come for surgery.

I think I am going to opt for Humira because of the freedom it gives you. I'm a very active and on the go individual and I would rather not have to tie myself down to hospital visits if I don't have to (even though they are only once in two months).

Even though I think I am going go for the drugs, I feel like I'm signing my life away to it since my doctor said I will probably have to be on them for the rest of my life. Thats scary . I've read some of the posts on this forum about Humira though and they have been mostly positive and most people lead normal, in-remission lives while on it. However, I have done a little creeping around the internet and have found some people who have had ver very bad experiences with this drug. I'm scared to try this, thats for sure .

The other thing is, I'm not a believer in pharmaceuticals. I have an appointment next week with a naturopathic doctor to see if there are any natural options for me. I don't want this fistula getting worse though, so maybe I should just give in to the drugs? I really don't know

 

[DustyKat]

As I said Starr, there are no wrong decisions here, just different ones.

I hear what you saying about meds and the space your head is in right now and that is what I mean by the statement above. If going to meds is what it takes to get you healthy and back on track then it is not giving in it is merely doing what needs to be done so you can get on with life in the same manner that most people take for granted, and there is certainly nothing wrong with that.

There is also nothing wrong with seeking out other options and opinions either but often what is needed straight up is to deal with what is there here and now and for it not to be left for too long. That is not to say that further down the track your options don't change or that you don't take on board changes to your diet and lifestyle that compliment the medication you are taking.

The main thing to remember at this point is if you do have a fistula, and symptom wise it does sound like you have, then you have a complication of Crohn's and complications take you out of the realm of mild - moderate disease. Unfortunately whilst ever that fistula exists you will be plagued with urinary issues, pain and infection, as the urinary system is a closed and sterile system and that has now been breached.

Good luck hun and please keep us posted with how you get on.

Dusty. xxx

 

[Jennifer]

However, I have done a little creeping around the internet and have found some people who have had ver very bad experiences with this drug. I'm scared to try this, thats for sure .

One thing to keep in mind is that many people don't go online looking for support when they are doing well. So we're missing out on a lot of stories of people who went into remission and have stayed in remission. I'm not suggesting to completely disregard the stories of people who had a bad experience but its important to keep that in mind.

I understand the fear of starting on biologics. I went on them myself and was afraid to start them even though I have been treating my Crohn's with medication for 22 years now. DustyKat was actually the person who made me less afraid to try it. My fear was because I didn't understand well enough how the medication worked and had been so used to just popping some pills everyday. The thought of injecting it or needing an infusion with an increase risk of reaction because your body isn't breaking it down like it would with pills is what scared me the most. DustyKat said something along the lines of it being a new treatment for Crohn's in general and new things/change can be scary. So she suggested that I just think of it as a treatment but its just taken differently. As simple as it sounds, that helped a lot.

To this day for me, steroids like Prednisone still had the worst side effects/outcome. Any other medication I was on that started to affect me in a negative way (for me it was 6MP which I took for over 15 years, then Humira and then Remicade), once it was stopped everything went back to normal and I was able to move on and try something else. With Prednisone I have damage that I have to live with for the rest of my life yet I don't tell people not to take it if they need it as our lives and well being are at stake. Being in remission far outweighs some of the possible side effects people may or may not have (not everyone has side effects).

 

[Marx]

Hi Star, I've found myself having to make this exact decision over the last 6 months or so, and before I share my experience I want to say that it totally depends on how bad your situation is, your lifestyle and how mentally calm or fed up you are. Everyone is at different stages.

I had originally pushed for surgery because of people's success stories against the will of my GI (he wanted me on infliximab). Having met my surgeon, he explained that I was too underweight and too inflamed for surgery ideally and that I should try infliximab even if just for a while until I'm primed and ready for a 'complications free' surgery. So I reluctantly went on infliximab and to my surprise it worked wonders during my loading doses but as soon as I stopped taking pred, my symptoms came back.

Long story short, for me I'm only okish when on pred and infliximab, I've had enough and about to have surgery this summer.

Having said all that, a lot of people find infliximab/humira works well for them.

Hope whatever you decide is works well for you!

 

[PVail]

Hi Starr.
My father had this exact same issue and also had the surgery to fix it . I think he had his bladder repaired and about six inches removed from his small intestine . honestly i would say he has never looked back and has a new lease of life. Doesnt take any meds at all apart from being diabetic.
Thats all i can tell you.
Peter