Decision next week - Humira or surgery - Please, please help... {Update - Went to appt}

My GI says exhaust every medical option, then go to surgerical.

I think it is a toss up...

lol. Ya I hear you Navy.

Do I want to start taking biologics? If they work for 1 year and then I'm back to where I am now would it be worth it, just to delay the surgery by 1-2 years? Is it worth it to keep ingesting steroids for another few months at least, to wait for the Humira to work? It can't be good to keep getting blood transfusions every 2-3 months, walking around all weak and 125 pounds.

Yet I know some say delay, delay surgery at all costs...

Hi Julia.

I've actually gone for a couple iron transfusions as well. They don't seem to agree with me. I have a normal/low blood pressure to start with (100/60) and it seems to make my bp drop. I passed out after one of them....that wasn't fun.

My wife is confused also. She feels very bad that all this happened after stopping my drug to try and conceive, but it was a joint decision. She's probably afraid to advise me into another bad decision.

Here is a list of my questions and history. I'm typing them up right now.



Can you determine the specific site of bleeding/inflammation/stricturing before the surgery? Do you have a good idea right now?

How can surgery help me gain weight when we're taking bowel out?

I'm having no noticeable blood in the stool, not much cramping, and have 1 normal bm/day. My problems are bleeding, weight loss, and gas pain. Does this make me a better or worse candidate for surgery?

Do you know why my hgb is so low even when I don't notice any bleeding recently?

I have read that the risk of a second surgery is anywhere from 30% to 70%. What is your experience and current understanding of surgical recurrence?

I've read that the rate of clinical recurrence is about 50% after 5 years. Is this your understanding?

Can my surgery be done laproscopically?

Will I need B-12 shots after the surgery? Given the amount of colon you are expecting to re-sect will I have chronic diarhea?

Do you believe surgery should be done as an absolute last resort? Given that I haven't tried Humira am I not as the last resort stage yet?

Given the length of this flare, do I have an increased risk of narrowing with the drug approach? Is it better to wait?

Do my anemia and low weight increase my chance of surgical complications?

Does use of prednisone affect surgery outcome?

What is the wait time for surgery?

What is the average recovery time?

Will I be given pain medication?


History Timeline

Diagnosis 1999 to September 2007 - Common gassiness and inability to gain weight, some fatigue. Hemoglobin fluctuating from 11 to 15. No prednisone except for 6 months in 2002. One BM/day, no signs of bleeding. Taking 50 to 125 mg of 6MP.

Sept 07 - Stopped 100mg 6MP. Feeling very good and want to father child. 145 lbs.
Dec 07 - Regular colonscopy done, stricturing and some endoscopic disease. Gas symptoms slightly increased, otherwise fine.
April 08 - Symptoms returning (gas, loose stool, some weight loss), start 75mg 6MP. 140 lbs.
May 08 - Black tarry stools. Hgb drops to 9.4. 135 lbs. Blood transfusion for extreme fatigue and breathlessness. Start 20mg prednisone. 100mg 6MP. Extreme, painful gassiness all day, very bloated, , 90% is burping. Upper GI scope is clear.
September 08 - Off prednisone, hgb up to 12.5. Weight down to 130 lbs. Lots of stomach gurgling, some pain which is sometimes waves of cramping (has not recurred since this period). Less bloating and gas than in May. Feeling better than in the spring but not in remission.
October 08 - After 6 months of 6MP and still symptomatic decide to switch to MTX.
November 08 - Black tarry stools, increased gas. Hgb drops to 9.4. Weight drops to 125 lbs. 25mg of prednisone. Receive blood transfusion.
Feb 09 - 10 mg prednisone / 25mg methotrexate. Weight 130 lbs. Gassy and some painful bloating after eating. 1 normal bm/day. Some loose stool at times. Hgb drops to 8.4. Receive blood transfusion.

When I talked to my Gi he said Humira or surgery were both reasonable alternatives at this point. So we started the Humira insurance process and booked the surgery consult at the same time and he told me to decide.

I'm kind of wishing now that I just asked for his outright opinion rather than leaving it up to me. I have a feeling that he would have said to try Humira, and that the surgeon on Thursday is going to say try surgery...

Hi Rider best of luck with your decision and hope it brings you the good health you deserve. lol gail

... and then if you do still need surgery in another 12 months, perhaps you'll be in better health, better shape, and more likely to make a speedy recovery?

Hi Rider,

My goodness, decisions, decisions, decisions. Are you going to try the Humira? I'm with you in thinking that if the humira is working for you the surgery would be further down the road. What did your GI say about the GI bleed? Do they know where it is and do they think the humira will heal it? You are already on MTX which is a good thing before starting the humira. I posted a reply about MTX, lupus and remicade on Tom's new post re his daughter which would answer your question re did my lupus go away. Did you ever try remicade?

Julia

The very real positive thing here is that you...YOU...are taking charge of your disease.  YOU have choices and YOU have made it clear that YOU will be the one to decide.  It is normal to want others input and to be respected that you are taking the time to get all of theinformation before proceeding.  Good for you...

IMO...the humira is the way to go....certainly you won't be any worse off and this may just delay things enough that they introduce something new for crohns that could help you....new and better treatments are arriving everyday.   As an aside....when things were geting bad for me...everyone I spoke to said they saw surgery in my future....funny thing was, it came about within 4 weeks of the first time we discussed it.  The take away from that for you may be that...yes it is in your future, but it is a last resort and one that you can fall back on just about anytime.  So why not try other non-invasive stuff first?

Ya, good point Kasper.

He said he couldn't say for sure until he looked and felt. He said the MRI showed about 3 inches of inflammation on the sigmoid, which means he would take out more to make sure he is connecting good intestine. He didn't say much about the ilium and how much.

He didn't think removing the small intestine area would cause a big problem, he was more concerned with removing the sigmoid and connecting it right to the rectum. He said this could cause problems later if the crohn's came back at the incision at the rectum since he may not be able to reconnect to the rectum again after that. Make sense?

Well maybe, not for sure. He's very experienced, I'm sure he's done it before, I think he was giving me all the risks. He said it would be a possibility (IF the CD came back there and IF I would need surgery on that area again) since there is only so much rectum...

She's doing alright. Everything seems to be going ok, but I'm sure she's stressed about me. Thanks for checking in Julia, hope things are ok with you?

I'm going to try to get me TB testing done tomorrow, I really hope I can start the Humira this week.

Thanks for the thoughts SydneyJo.