Monday, January 18, 2010

The Crohn's Dilemma: Surgery or Drugs?

Do I cut my body, or poison my body?

I've reached the dreaded decision point that many IBD sufferers eventually reach, where your disease is causing you repeated complications whether it be obstructions, fistulas, abscesses, severe pain, etc (for me it's a repeated fistula/abscess in the same spot). Complications which cannot be treated with the milder maintenance drugs or a one time hit of something like Prednisone. It keeps coming back. The abscess bump in my last post actually ruptured through my scar (!) and is now open on my abdomen in all it's gross, packed and bandaged glory, with a round or two antibiotics to be safe. Add Entocort (Budesonide) on top of my Salofalk (5-ASA) to bring the inflammation under control, and as you can imagine I'm pretty messed up and fed up.

So, the wonderful options that lay on the table before me are:
  1. surgery: a resection of 10-15cm of my terminal ileum (small intestine).
  2. powerful drugs: my GI suggests Remicade (Infliximab).
  3. live with it: let the fistula heal, stamp down the inflammation with short term Entocort or Prednisone and probably be in the same boat again soon. Maybe another year if I'm lucky. Continue to be a prisoner of a horridly restricted diet.
Option number 3 isn't even on my radar. I can't keep doing this every year or so. Even when I feel good, my lifestyle is limited by what I can't eat. I'm paranoid to travel. Something needs to be done. My GI recommends leaving surgery as a last resort. He wants me on the new and powerful drug Remicade. My surgeon who treated my abscess last year and looked after me this latest hospital stay thinks I'm an excellent candidate for surgery and would do well. I've also talked to several ladies who are feeling amazing after surgery.

To be frank, the pros and cons of each nearly balance each other out. This is the hardest decision I've had to make in my whole life, and the consequences of either choice could be huge. Huge. I'm sure I'm not the first to face this decision so I'll lay out the pros and cons I've gathered for each one, to help others and to gather some feedback from you readers. I can already say that I'm leaning toward surgery and my family is favouring that side too. It's the risks I know versus the unknown risks.

Surgery: Terminal Ileum Resection

PROS:

- I am a prime candidate for surgery. My Crohn's is localized to a single small, minimally important spot in my small intestine. It is not in my colon (knock on wood). I am thin, young and a non-smoker. My surgeon thinks I would do well.
- The section to be removed is in VERY bad shape. Possibly beyond the repair of drugs.
- I know several ppl who are doing excellent after surgery and can eat what they want. I want to eat normal food again. It's been almost 9 years since I had fruit.
- I can work from home as I recover after surgery.
- I plan to have kids in the next few years. This seems the best option in this respect. My surgeon says it will likely not impact my ability to have kids. The most likely of the unlikely results is one ovary could have a problem of being out of position. She would put it back in position during surgery but scar tissue could affect it.
- I could be drug free or on a low-power maintenance med afterward.
- If the Crohn's comes back, I could catch it early and hopefully not get to this bad condition again.

CONS:

- Scar tissue from surgery could cause problems. May lead to the need for follow up surgeries.
- I will end up with (another) lovely scar on my abdomen.
- A chance of complications like infection.
- Might still need a maintenance medication.
- Crohn's likely will come back again.
- Might only buy me a few years of remission. Then what?

Drugs: Remicade (Infliximab)

PROS:

- Does not involve surgery.
- Remicade has shown to be very effective.
- Some people experience some healing of the intestine while on Remicade.

CONS:

- Long term effects of this drug are unknown/unstudied.
- Effect on my ability to have kids is unknown/unstudied.
- How Remicade interacts with other drugs is unknown/unstudied.
- Cannot take while pregnant. If I go off it to have kids, I may become immune to it and not be able to go back on it. Do I want to save this for later if needed?
- May cause a slight increase in your chances of getting Lymphoma (a type of blood cancer).
- Very expensive and hard to get grants to get on it.
- It is an infusion drug (by IV) and I would have to go every 8 weeks or less to get an infusion (a lovely reminder of how 'sick' you are).
- I likely would still need to restrict my diet like I do now.
- This drug is an immune system suppressant and puts me at higher risk for other types of infections.
- Some patients on Remicade develop an auto-immune disease called lupus-like syndrome.

(source for Remicade info is a Remicade pamphlet and my doctor).

Conclusion

At first blush the choice seems clear because surgery has lots of pros and Remicade has lots of cons. However the surgery cons are major, and the Remicade cons are mostly unknowns and low probability. Surgery is also a very emotionally scary step to take. So the two choices are very close to being even, making this a very hard and stressful decision. I still have to meet with the surgeon to ask my final round of questions before making my decision, in the meantime, any comments or feedback or personal stories would help so much!!

Update: Jan 19 - fixed spelling of Remicade.

Addendum: I just came across this wonderful article which illustrates what it's like for people who have to live with an 'invisible' disease. Please read and share: The Spoon Theory.

19 comments:

  1. Bright Side,

    I struggled with this same choice one year ago, and you will never have the "right" answer. When I finally made my decision to have surgery, not all my doctors were on board: no one is going to fully agree, which makes the decision that much harder. Surgery is hard enough when your medical team is backing you 100%, but when they disagree...talk about an anguished decision!

    I chose surgery because surgery is the reality of having Crohn's. Almost 3/4 of Crohn's patients will need surgery eventually. I, too, want to have children, and I know that surgery is not a cure-all (in the the least..it's a weak defensive move but the best option we have) but surgery can buy you several years of feeling well, and that's what I needed. If I chose Remicade - and it was working - I would not feel comfortable continuing while trying to conceive and while pregnant. I also knew if I stopped to have a child, the changes of my body not rejecting it when I started up again were almost nill.

    I want to keep the biologics in my back pocket for later on, so I opted for surgery. I don't regret my decision: you just can't, because there is no right or wrong decision. I would get second opinions from surgeons AND GI's and then go with your gut. (That was a bad pun.)

    Again, not everyone may agree, but the portion you may have removed isn't significant in terms of length (although I know it feels like it!), and yes, you may be opening a can of worms by making yourself a candidate for more surgeries, but with surgery already a very real possibility in the future regardless, and with bowel that is already so badly diseased, maybe it's the right option.

    Then again, I'm biased. I did have surgery (as you very well know! ha) and am feeling well. If the pain returns next month I'll be incredibly disappointed, but this is a lifelong battle and I know that surgery was just the first skirmish. I'm still coming to terms with that.

    Good luck on your decision; I know how agonizing it can be. My blog posts from January through April detail my coming to terms with my decision to have surgery.

    All my best.

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  2. Hi! I had surgery last year with 12 inches ileum removed after a ten year battle with inflammation only. Surgeon told me in my case no amount of meds would have removed the inflammation. I went right back on imuran and remicade the day after surgery. Today's colonoscopy shows crohns free. I feel great ever since surgery.

    If you go in for an ileocecectomy try hard to find a surgeon who does hand assisted laparoscopic. My surgeons taped me shut and the scar is minimal and there was very little pain.

    I recovered quickly and feel 100% normal now nearly one year later.

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  3. There are alternatives to drugs and surgery. They just take a lot of patience and finding the right combination that works for you. My son was diagnosed with Crohn's Disease 3 years ago. I have an adult-aged niece with ulcerative colitis who has chosen Western or allopathic medicine to treat her disease and have watched her continued struggle. Despite many drugs and operations the disease marches on. Because of this experience and because my son was diagnosed so young I was determined to try to keep him away from the life-time of drug dependency and potential surgeries doctors told us we were about to encounter. He had an abscessed fistula that has now healed and had sores and inflamation from the roof of his mouth to the base of his anus. They have healed also. Initially he was on a very restricted diet. In addition, he is going to a naturopathic doctor. I spoke to as many people as I could who had chosen complimentary methods to improve their health and deal with autoimmune diseases to find the help my son needed. Once he was on the diet, receiving good alternative health care and the correct antibiotics he began to improve within two days and we have not looked back. We have cut his medication back continually and are beginning to take him off of his final antibiotic. He has never been on steroids, beta blockers or inflixamab. He can now go to friend's houses and parties and eat anything without repercussions. However, we stick to a very healthy diet at home. All this to tell you there are alternatives.

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  4. Okay, I'm a long time follower, not so much poster. But I feel compelled to comment. Mainly because I had the almost same surgery in 07 and was on remicade for the past 5 yrs on and off. I recently had to switch to humira after maxing out on remicade. Remicade is a miracle drug in a lot of Crohns patients and was at first for me. However, I waited too long to have surgery - when I did it I had a do or die kinda thing going- so my fallopian tubes are scarred. I also have PCOS but inflammation from Crohns did scar my tubes. Will this happen to you? Probably not, but no one told me years ago what could happen and I wish they did. Everyone was concerned with what was easier for me at that moment- not in the long term aspect. I probably can have kids in the future- but I probably won't be able to.

    The long term side effects of remicade that I noticed is that after a while- I was getting an infusion every 4 wks which is max dose- my veins began to blow (not a pretty site nor feeling) and while I remained mostly prednisone free- I did do a bout with entocort (didn't help me at all) and on/off with flagyl/cipro. I had a few polyps removed and recently won my disability case. But before that I did get down to 101 lbs at 5'7. I smoked for most of my Crohns till I quit a year ago, so take that into mind as well.

    The annoying side effects I noticed was that they had to slow the drip down for me b/c I'd just get out of breath and super hot. I would take pheneragan after b/c I would get so nausiated ( I actually vomitted only twice during the infusion during the 5 yrs on/off it) but towards the last few infusions I would get horrible night sweats. Just really gross and I never got a period- however I dunno if that can be attested to the remicade or the various ailments I've collected. I did have mood swings as it made me rapid cycle with my bipolar disorder. The time period between humira and remicade I had a major meltdown and really kinda detached myself from a lot of things.

    Should you do surgery or remicade? Eventually you'll have to do both honestly. But that's my experience and I hope it can help you.

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  5. You will feel so much better after the surgery. I had it. I healed quickly and was (seriously I was 19 and stupid but...) tubing down a river three weeks after surgery!!!

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  6. hi BrightSide -- i can't make this recommendation from experience because i've been fortunate enough to avoid surgery thus far. so i make this comment as a scientist :) my crohn's is widespread enough through my small bowel that it has made more sense for me to try to combat it with drugs. remicade was the next (most recent) step for me because my flare isn't localized enough for surgery to be that helpful. however, in your circumstance, it seems that this same area has been your primary problem for a while and is invasive enough -- not to mention painful enough -- that the surgery seems like the better option in terms of whiping out the trouble for good.

    hopefully everyone's experiences are helping rather than blurring the line! best.

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  7. My deep deep thanks to everyone for their comments. It really does help! I am still leaning toward surgery. I'll write about it once I make my final decision. Thank you!!

    ~Bright Side

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  8. 20 years a crohnes patience a few resections used remicade once no problem now in trouble again will remicade work or do i have another resection

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  9. Hi Anonymous, you'll have to ask your Doctor about that. Sounds like you've had quite a challenging road!

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  10. I was diagnosed with Crohn's in late April. My doctor's have been trying to treat me medically rather than surgically. I developed an abscess where the inflammation was and the surgery/medical debate grew even more with the abscess. My doctors have said that the inflammation is too big to have the surgery. I have been on Remicade since May (minus the 6 weeks treating the abscess). I know that the Remicade is helping treat my Crohn's. I am feeling much better and I have a lot more energy now. Everyone who has seen me since April has noticed how much better I look and I tell them I feel as good as I look. Its been a rough summer for me and I know that things will be getting better now that I am on a treatment plan.

    I have heard stories of people who are completely healed after surgery and have heard of stories where patients had relapse of Crohn's after surgery. It is a very difficult decision that you and your family have to make. I'm glad that the decision was made for me based on my condition. Good luck with your decision and even better luck with getting healthy.

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  11. I have been receiving Remicade infusions for almost 8 years now. I have Crohn's and fortunately only deal with inflammation. I'm writing to tell you that I have a beautiful, healthy and happy 11 month old son today. I developed crohn's at 16 and was placed on Remicade at 17 (I'm currently 25). Although my pregnancy was not planned, I felt confident with the next 9 months that were to come. My GI explained to me that quitting Remicade and going without treatment would more than likely result in miscarriage or malnurishment in the baby. To me, this was a no-brainer. So, my infusions continued until 2 months away from my due date and then started back up again two months after I delivered. While pregnant, I was completely pain free. Again, my son is a bundle of joy and shows no signs of side effects. I am still nursing and he is almost one! So, I am a believer in Remicade.

    Now, with that said, there are definately cons. For me, the expense is the number one. The stress of always having to maintane a job with GOOD health insurance is starting to take a toll. Remicade is roughly $8000 per infusion. That would be impossible without insurance. There are organizations out there that reimburse after proof of payment, however. Other than that, infusions are very demanding and time consuming. I am now on a four week schedule, so I have to take off once a month. As far as physical effects, I have none. From what I'm told, that is rare however.

    I am going to keep riding the Remicade train until it stops and then we'll discuss surgery. Please consider all if your options before you decide. Also, the research team that I see is AMAZING (UT Southwestern, Dallas TX)

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  12. Your story sounds so similar to ours. My 18 year old daughter was diagnosed this July with Crohns, only in a small area of the ileum. She has the inflammation problem and cramping and is now on 50 mgs. of 6mp. The 6mp has not taken hold yet. She has only been on it for four weeks and I have been told it takes 8 to 10 weeks. She is tapering Prednisone gradually which has caused facial hair growth, back hair growth, yada yada. She was a beautiful confident girl and this has set her back so far. She now weighs 93, was down to 80 when it hit. I am also wondering since it is just in one small area if surgery would be the best outcome for her so she could hopefully with luck enjoy a few good years at this young age. Let me know what you decide and best of luck to you.

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  13. Hi Margie,

    Please feel free to email me, or pass my address to your daughter if either of you have any questions whatsoever. I have had good results with my surgery and feel fantastic now. I also found Entocort to be much better than Prednisone which is a horrid, horrid drug. My heart goes out to you with this awful struggle. But things will turn around I think. I find that it is worse at the beginning as doctors are trying to figure out 1) what is wrong and 2) what treatments work for you. Then it improves I find. Don't lose hope!

    PS- my email address is in the About Me section at the top right of this blog.

    *hug*
    ~Bright Side

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  14. Hiya im 19 from the UK and i am really fed up and i was wondering what you decided to do in the end?

    I worked out that i have had crohn's since i was around 7 but i wasnt diagnosed until i was 18 meaning i was put on prednisolone for 7 months and then directly onto powerful drugs first it was remicade, which didnt work and gave me horrible side effects. Next it was Humira injections, im currently injecting on a two weekly basis but again the side effects im getting outweigh the benefits ):

    I also have colitis and a rare form of oral crohns called 'oro-facial granulomatosis'. So 3 lifelong illnesses to deal with at a young age, plus the added stress and pain from the side effects.

    My bones and joints are ruined from the amount of heavy duty meds ive had pumped into me and finally now my GI is giving me the choice of what i want to do.

    Option 1: Drug trial for a new medication.. more heavy drugs and possible side effect but also a chance it could work.

    Option 2: Surgery.. Complicated and painful process and because i have colitis and crohn's i have no idea how much of my gut will have to go meaning i could end up with a temporary stoma and/or PEG which feeds liguid nutrition directly into my stomach. Also a 2 month healing process in which i cant bend or lift anything so my usual duties go out the window.

    Im scared and fed up. At 19 this is a tough decision and id really appreciate if you could get back to me with some advice.

    Regards.

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  15. Hi Sarah, I'm sorry to hear you are having such a hard time. It hardly seems fair to have to face so much when so young. Unfortunately no one can tell you which decision to make. It will require a lot of heart-to-heart talks with your family and with yourself. One factor in my decision to choose surgery was that I only had a small section of damaged intestine. However, keep in mind that once you have surgery, you cannot undo it. With drugs, if they don't help you can always go off of them. But I know what it is like to be fed up with meds and their evil rainbow of side effects.

    Gather as much information as you can from your doctors, and maybe seek a secon opinion. There is unfortunately no right or wrong choice. Whichever you choose, don't be afraid, go for it 100%, and if it doesn't help, do not have regrets- try to accept the outcome and move forward.

    Good luck! Let us know how it goes! *hug*

    Bright Side.

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    1. Thanks! i just feel so lost sometimes, i have friends with crohns but their disease is only mild so i cant even talk to them because they dont quite understand the problems im faced with, they take a low dose of meds on a daily basis and they're alright to get on with life.

      Found out today my consultants view is that surgery might be best because my entire left side of my large bowel in diseased and battered but the choice is still mine. Unfortunately before we make any decisions he wants to get an inside view on my crohns which means those dreaded scopes again!!

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  16. Hello BrightSide!

    I found blog while doing my research on whether to opt for surgery or medication. I am so happy I did as my situation is very similar and I am so confused.

    I am 33 years old and would like to have children in the next couple of years. I have had Crohns since my early twenties and have never been on medication. My flares were severe but only occurred every couple of months. I was in remission for a little while but now it has come back worse than ever. I have 4 strictures in the lower part of my small intestines. My gastroenterologist seems to think surgery is necessary. The surgeon will do the resection if I feel it is the best option for me but he was surprised my doctor did not have me try medication before this point. Now I am at a cross-roads; do I give medication a shot at this point in my Crohns or opt for surgery. My worries are; I will need surgery at some point in my life, should I hold off since I am so young? How will medication effect my body? The side-effects can be severe. I would like to be somewhat healthy for when I want to become pregnant? I am in pain every day, I just want this out of me!!!!

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    1. Hi Sabrina! I'm also surprised that your doctor did not recommend medication before now. You might want to hunt for a new doc. However it may be the case that at this point, medication might not help if things have gone too far. I don't know if drugs can help with strictures.

      I do know that my surgery was done laproscopically (through small incisions with cameras) and I felt AMAZING for many years after, and even now am only having minor symptoms. I'm on my 3rd pregnancy and am glad I was not on strong meds when pregnant. There are however drugs deemed safe while pregnant. It's a very personal decision. I only know that I have been very lucky and have not regretted my decision.

      After this baby though, I might have to make a decision re drugs again.

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    2. Thank you so much for your reply! I am doing my research to way the pros and cons (which btw yours was very helpful!). I am leaning toward surgery, the medications seem so hard on the body :s.

      Glad to hear you are feeling good and healthy after your surgery!

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