Decisions - Wait for medication or try surgery

Hello all,

I have browsed the forum for awhile, but this is my first post.

I am currently a 27 year old male. I was diagnosed with Crohn's disease in 1997. I had a few week long hospitalizations before Remicade put me into remission for nearly ten years. I started getting rectal abscesses starting in 2008 and I have had four surgeries to drain those. My GI took me off Remicade and I've been through Humira, Cimzia, and I am currently on methotrexate.

No medication since Remicade has worked for me. I continued to get abscesses and within the past three months my disease has been active. The flare coincided with my last abscess surgery in March. I have had nearly uncontrollable diarrhea with small amounts of blood that is making life very difficult. I can barely make it to work and back at the moment. I am afraid to go anywhere.

I just got a colonoscopy today. My GI came and talked with me afterwards. My options are to maintain treatment with methotrexate to see if it works (I will inject my 6th dose this Monday), switch to Tysabri (a drug that comes with a small risk of a fatal brain virus), a clinical trial, or surgery.

My quality of life has decreased significantly due to the diarrhea. I have tried immodium, the BRAT diet, and adding things like fish oil, probiotic, and peppermint oil. Nothing has helped. I don't want to have to live like this for the next several months. I am leaning toward surgery. That would most likely involve removing part or all of my colon, rectum, and anus. I would have a permanent bag. I think I would be OK with this if it restores my quality of life.

I met with my surgeon a few weeks ago and he reviewed the results of an MRI. He believes that I will need the colon removed soon if I don't respond to medication. I have another appointment with him on June 29th. If my current medications do not start providing some relief I am going to seriously consider scheduling surgery.

Has anyone else been in a similar situation or have any suggestions?

Joe

Thanks Nanners.

I am struggling with this since surgery is so final. I can't help but think if I go through with it that some wonder drug will come out shortly afterward. Then I will be second guessing if I could have suffered through just a little longer.

I am in the same boat.... I actually decided to start a clinical trial for MLN0002. Had my first infusion 10 days ago. Infusion #2 this coming Wed. It's a double blind randomized trial so I may or may not be on the drug. After the 3rd infusion, everyone goes on the drug. I have to say that the Bm's are about half what they were... the tough part is that I also cut out all procseed foods around the same time... but I don't care much for the reason, just glad I'm down to 6-7 per day vs. 15-20... I'd consider the trial.... but if you're like me, they've pretty much told me that I will eventually lose the large bowel..... so I'm buying time with the trial and doing LOTS of research.

Best of luck whatever way you go. keep us posted.

Hi jsein86, I'm in a similar predicament. Though I'm currently of the opinion that for me surgery is not an option. My doctors have told me that it can take up to 4 months for methotrexate to kick in. I've been on the highest dose (once a week) for ~6mos with no help, so my doc has been talking to me about Tysabri too. From what I've learned online you're more likely to develop the brain virus (PML) if you already have JC virus antibodies. The drug company who develops Tysabri is apparently working on developing a commercial test for the antibodies (http://ms.about.com/od/treatments/a/Testing-For-Jc-Virus-Antibodies-For-Tysabri-Related-Pml-Risk.htm). I'm supposed to hear from my doc soon to discuss treatment options and the biopsy results of my latest scope, so I plan on talking to her about PML probabilities and JC antibody testing. It's not conclusive, but I would just feel so much better going in if I tested negative for the antibodies. Otherwise, those who developed PML were on Tysabri for over a year and I've read it takes approx. 3 months of infusions to determine whether you will respond or not. I personally want to exhaust every option possible, including clinical trials, before going through more surgery. I've heard good things about a few trials out there (for which I unfortunately did not qualify) so it seems there are several more treatment options, other than all these biologic therapies, coming down the pike.

Have you tried the Specific Carbohydrate Diet (SCD)? People have said it's saved them from serious surgery and kept them in ongoing remission. SCD alone hasn't worked for me yet (it can take years), but I feel maybe I just need that additional medicinal bump to spark remission and avoid additional surgery. If you're interested, check out the book "Breaking the Vicious Cycle" by Elaine Gottschall.

SLK1119,

Thanks for the suggestion. I just put a hold on the SCD book through my local library. It is worth a shot.

I don't think methotrexate is working for me (although I'm only on my 6th injection of 25mg). I've been getting headaches since I started it and I have developed a rash. Not sure if the rash is related to the meds, disease, or something else. I have a topical steroid cream that doesn't appear to be working for it. The doc said the next step is an oral steroid which I would like to avoid.

I think I would almost prefer surgery to trying Tysabri. There don't seem to be many good options left and that brain virus scares me a lot. At least with surgery I know I can have a life. Hopefully I can continue to hold out until there are more options.

Sorry, I hit submit by accident. If surgery will definitely make my quality of life better, I'd do it in a heartbeat. But, there are always risks and with crohn's, one never knows if it will return. Ugh. Sucky situation were all in!

Keep us posted on your decision....and good luck.

Joe, when you tried Humira and Cimzia, did they pair it with another drug or were you on it without anything else? I found that those of us with very stubborn and severe crohn's respond better with 2 or 3 different meds given at the same time. When I was on Cimzia, I also took Lialda and some other natural things such as Bee Propolis and Fish oil. Another option, if your crohn's is on the Left side of the colon, is the Rowasa enemas. Have you tried those yet? I am using them now and they seem to really help me as my disease is isolated to the left side of the colon. I also still take the Lialda because treating from both ends seems to be working for me too. I can also recommend the SCD. Although I don't follow like I should, I do strict SCD when I start to flare and it has really helped during a rough spot. I am like you and am fast running out of options but I am continuing to fight although I respect anyone's decision to go another route. I wish you the best of luck and I hope you are feeling better soon!

Joe,

I feel for you -- it's a very hard decision, and no one can make it for you. I went through a similar list of drugs -- got one relatively good year from remicade, and cimzia and humira didn't work for me. I wasn't in remission for a long time, and then I started getting awful complications.

The clincher for me was when I got a fever that went as high as 104.6 when I was on cimzia (this was in January). It was so scary -- my worst hospitalization ever (ten days), the only time when I thought I might actually die of the disease, or rather of side effects from the drugs I was taking for the disease. At that point, the only drug that was helping at all was prednisone, and my docs were pretty clear that it was not a long term option.

I just wasn't feeling too keen on putting any more scary drugs in my body, especially ones that were less tested than the ones I'd been on. As for tysabri, which I had investigated earlier, it only has about a 35% success rate for Crohn's, which just didn't feel worth the risk.

I also ended up missing a lot more work this time than I had, and my thought was, "I'd rather keep my job than my colon."

But in a way, the dramatic fever made it a lot easier to decide on surgery, and I get it that you almost wish it were the only option. My gi doc thought it was a good decision, and would have been two years ago. I probably would have kept resisting the surgery otherwise, as I just hated the idea of losing original body parts.

The surgery is tough, and I still have a complication that's not fully healed, but within about two months I just felt like I had my life back -- like I had forgotten what it was to be well. Absolutely everyone who sees me thinks I look better than I have in years -- my color is back, I've put on weight. I can eat things I couldn't eat before, I'm starting to do things like go for a walk every morning w/out worrying about bathrooms, go to concerts, reconnect with old friends that I was too tired to see, etc.

I did think a lot before surgery about how I would feel if the disease was cured in a year..... and you know, I'd be thrilled, but I just couldn't wait that long. I feel like I tried, my doctors tried, and I'm fine with it. I am so grateful that the surgery exists, that smart and compassionate people are willing to be colo rectal surgeons when its so unglamorous..... in so many times in history and places in the world today, I would be dead.

I started thinking that my heart, lungs, liver, etc got together and voted my colon off the island...... and my surgeon gave me some pictures of my colon, and it just was so shriveled in places -- looked so awful, was hard to imagine it could have gotten better, and I was glad it was out of me.

And just to make matters really weird, my colon biopsied as having no signs of Crohn's..... my doc was pretty sure it was Crohn's going in, but now he leans towards UC, but it could be either one....

Getting used to the bag has been pretty easy. There are some mishaps and accidents, but mostly it is way easier than dealing w/the urgency I had before surgery. I can actually wait to empty the bag, don't have to run....

I mostly go to the ostomy board now, so I didn't see your post originally, but do feel free to come over there and post any questions or whatever ..... that list has been incredibly helpful to me before and after the surgery, very generous and knowledgeable people. I was surprised to find how many people had gone through the same list of drugs as I did, but opted for surgery much sooner along the way, and were happy w/their decisions.

BTW I tried all kinds of diet things, supplements, etc, and some helped a bit, but not ever enough to put me into remission. I very well might have missed something that could have worked, but I was just done..... done trying things, done being sick, done with the drugs etc..... When I realized I was done, it was like a switch had flipped, and I've been completely clear ever since....

Good luck w/this very difficult decision.

Hi Joe, I kinda understand how your feling right now, ive just been told last week that i have to have surgery, so i dont have any option in the matter now. I have crohns disease, at present its only on the left and transverse colon. I was on imuran then remicade, but they both failed, id only had 3 injections of remicade when i was taken into hospital with inflammed and swollen colon so bad it was cutting off the ureter tube between my kidney and my bladder. I had a stent put in but the inflammation, and an absess is still in the left hand side of my colon and when i stand or walk for more than 5 mins I am in agony and need to sit or lie down, my stomach is also distended, so i look like im 5 months pregnant! As far as im aware they are doing a colectomy and hopefully a temporary ileostomy, but i guess they wont know until they open me up and have a look. Just reading Blueglass response to you there has actually helped put my mind somewhat at ease about it all. I hope you find the right decision for you and get back to feeling like a "normal" person again, no pain, no sickness, no toilets, etc.

Joe and Juicicles,

I'm glad my post was helpful to you, and do feel free to post on the ostomy list... people are very welcoming and everyone knows how hard a decision it is. It was just so inspiring to me when I was so, so sick and facing surgery to "meet" all these people who were happy and healthy and knew what I was going through and were willing to help.

Re tysabri success rate -- most of the gi docs I saw in the hospital understood where I was coming from w/the risk/benefits of the drugs.... but one doc said that 35% was about as good a rate as they get for any of these drugs! As if that were a rationale for going forward. I first took remicade on another hospitalization, and they told me 1/3 that it would work well, 1/3 that I'd have some response, and 1/3 that I'd have no response. It was like a miracle that first time..... so I was in the lucky third, but it didn't last.

Best of luck.