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

Hello everyone. Would you mind giving me your thoughts on my situation? I will try to keep this as brief as possible but also give you guys enough info to give a meaningful opinion. Here is a timeline to make this easier:

Sept 07 - Stopped 6MP after being on it for 6 years. Feeling great. Want to father child though.
April 08 - Wife not pregnant. Not feeling so great. GI says 6MP is ok to take when conceiving, start 6MP again. 100mg. Wish I hadn't quit the 6MP...
May 08 - Acute upper GI bleed. Hemoglobin drops to 9.4. Lose 10 pounds. Now 135 pounds. Blood transfusion, 25mg prednisone and 100mg 6MP.
September 08 - Not feeling too bad, but not great. Maybe I'm getting better....Wife gets pregnant.
Oct 08 - Have weaned off prednisone. Hemoglobin up to 12. Weight down to 130. Lots of stomach gurgling, something going on. Had some diarrhea, couple days laid up on couch. Not feeling so great after 6 months of 6MP, decide to switch to MTX, 25mg.
Nov 08 - Acute upper GI bleed. Hgb drops to 9.4, weight drops to 124. Blood transfusion #2. Stay with MTX, 25mg prednisone. Wish I hadn't quit the 6MP again....
Feb 09 - Weight up to 130 lbs, but Hgb back down, to 8.4 this time. Not an acute bleed (stool is brown), so must be slow bleed somewhere? Stuck on 7 to 10mg prednisone. Heading for blood transfusion #3. Still on MTX.

GI says try either Humira or do surgery. Rationale for surgery is that he thinks a small area is bleeding (I've had a SBFT and MRI of intestine in the past 7 months). Perhaps it's better to just take out the bleeding part rather than throw a bunch of systemic drugs at the body. This flare is 10 months long now and now I'm stuck on pred. If I do have the surgery I would go back on 6MP for maintenance.

Surgery would be of ileum and a strictured part of the descending colon (which he thinks is about 5cm). I'm not sure how much they would take of the ilium, doesn't sound like a lot but who knows once they take a look, right?

Here is one more thing to consider, I don't know if it makes me a better or worse candidate for surgery. I've never had diarrhea, I tend towards constipation but mostly have 1 normal bm/day (unusual, I know). I've never had alot of pain, when I do have pain it is gas pain (don't get me wrong it can be VERY painful and keeps me from sleeping, I look pregnant sometimes) but I've never had much cramping. I guess this is also why the GI thinks we're looking at a small area. My problems have always been weight loss and bleeding until the 6MP got me stable and now again since last April.

The Humira concerns me. Infections, joint pain, extreme fatigue, lupus (temporary/permanent!), MS, psoriasis (this is in my family, Humira is used to treat psoriasis but it also causes it? strange), blood disorders, etc. I know the really bad side effects are "rare" but they don't seem to be too rare on this board or when I look at askapatient.com.

My appt with the surgeon is in one week, Thurs the 19th. I will then decide. I REALLY, really need some input guys, thanks!

I have similar symptoms as you. How you got diagnose? I am not sure if its IBS or crohns

My Doc told me I have crohns cause my constipation. As far a I know most people have diarrea. Not too sure if he's right. I have gastritis and IBS symptom. CBC, small bowel x-ray, ESR are all normal. IBD serolgy 7 show marker with crohns. I would have dull pain above and below the navel plus rectum pain after eating not to mention my gastritis pain. Its worse at night. I dont have diarrea or blood, only constipation but I go daily, only hard stool.

Sniper and LMills, thanks.
Kunglao, I've replied in your thread.

Mike

Thanks CheerDad. You said in another post that you had C before your first resection. What happened after that, did you have D?

So you're saying that surgery sucks, but the bleeding may be a good reason to do it? I'm glad that the Remicade is helping you, very positive to hear that.

How long were your recoveries, 6-8 weeks? I'm sure it does suck! However, the Humira can apparently take a month or three to work , so I'm trying not to dwell too much on the surgery recovery. Does that make any sense?

Hey Rider Fan,
Firstly congratulations on your wife being pregnant, I am very happy for you both. I feel for you and the not knowing what would be best, I to am in a position similar, I have had one surgery and for me was not good as the disease came back 6 weeks after surgery with a vengence and have been on remicade which was unsuccessful for me so they switched me to humira and so far no difference either but so many people have had good results from either of those drugs and in my opinion I would try anything to get out of surgery again. But in saying that it may prove to be the best thing for you and so could the humira. I am with the others you need to go over all of what you said above with your surgeon or GI and weigh up your options, as I am doing right now too, looking like an ileostomy for me so hopefully it will help. Sorry dont mean to sound so negative or confuse you more, just wanted to wish you the very best in whatever decision you go with and please keep us posted, take care

I had a resection that sounds alot like what they are considering for you. Best thing I ever did, it gave me a much better life. But the disease came back pretty quickly and I'm on Humira now. It doesn't seem to be helping much, but then again, maybe it is slowing down the progression of the disease, then again, maybe its not! I'm tapering off a round of prednisone which hadn't helped enough to warrant staying on it. My doc says surgery again is the next option, but he'll have me stay on Humira during and after the surgery, hoping it will work. I've not had any real problems with the Humira, it just takes away a day of my life because of fatigue every other week (when I take it I get wiped out the next day) but its worth that if it's working. Medications, surgery, there really aren't any GOOD options with this disease are there?!! Good luck with whatever you decide!

I was on Humira for year with little to no relief...I stayed on it because I feared remicade to be worse for me....

the doc an di had decided to stop the Humira and maybe try remicade when I self dx'd a blockage (thanks to some help from this board)...the doc agreed and we decided to stay on the humira while testing for the blockage...then over the period of 30 days: I had to spend a couple of days in the hospital with a partial blockage...released went in for anothe c-scan (had one when I rushed to the ER) plus did the old barium x-rays and a contrast c-scan/MRI....results showed some area of "small" concern.....decide to do the pill cam....two weeks later (two days prior to pill cam) I block again...go to ER...get admitted for emergency surgery...pass the blockage...c-scan at the time shows a major block....block passes...hold off a day or two to get build up of IV anti-b's and fluids....then a resection of the small bowel (took out 30 inches).

NOW: I am much better, gained 10 pounds...first time to gain weight of any importance in 5 years....the Humira seems to be working.  the reasoning here is that the Humira could not work because it was wasting most of its "healing" powers on a 30 inch setion of mess that could not be healed....now that the bad stuff is mostly gone it can concentrate on what is left.

My personal opinion for you is to see about the pill cam before you do anything as serious as surgery or Humira....I have read a lot about the pill cam and feel that it will really show if there is a small bowel issue and where it is.

Good luck

My story is similar to yours. After having been on 6mp intermittently for well over 10 years, I had to go off of it b/c my white blood cells were suppressed way to far. I got very sick. Tried 6 months of humira that did not work at all for me. Now, I'm facing a very big surgery-total proctocolectomy and ileostomy.

I definitely do not regret trying the humira. i wish like heck it had worked. I wonder if I should have been more aggressive and tried to get into a study/trial earlier on with tysarbi or one of the new drugs. I am kicking myself a bit.

If your doc doesn't think that surgery is imminent and that you could try humira or a drug for a while, why not? That's my opinion. Of course, with a family and a baby on the way, I would imagine you don't want to take the chance of being really sick for the birth. If you haven't had any recent study, might be a good idea to evaluate how far the disease is along and what you're facing for the humira to fix. Unfortunately, my disease progressed to far and too fast for the humira and I am too sick to try anything else. But that's me.

I hope you have much much better luck and wish you good luck making your choice.

Hi Peeps,

I have been on Humira for 4 years now. I drug studied it for 3 years. Let me tell you it made a big difference. I had 40 cm of my bowel removed because of blockages and strictures. I can eat almost anything but corn and cabbage and brocolli. Once you get used to giving yourself a shot, its not bad. Look on the bright side of it. You take a shot, its helps you live.

Can someone tell me if it's stupid to consider surgery when I don't even take pain meds? Like I said my issues are weight loss, severe anemia requiring transfusions and lots of gas and indigestion. Sometimes if the bloating is really bad I'll take a tylenol 3 to help me sleep.

thanks
Mike

Thanks Julia, that would be wonderful. The first time I bled I wasn't on MTX, so I can't blame the drug for sure, but who knows.

I know I have some stricturing in the descending colon, and I'm pretty sure there is some inflammation going on in ilium, given the indigestion, weight loss and dark stool bleeding (although for the last 2 months I haven't had dark stools, yet me hemoglobin keeps dropping).

Thanks again
Mike

I think a lot of people gave you some history and comparative information so that YOU could make an informed decision.  I can only speak for myself...but I would never tell you if it was dumb or smart....first I have hardly any information to go on...no test results to study...don't have my doctorate degree.....it is a pretty big responsibility to take on what you are asking for here.

Ask yourself this....would you trust ...even a real doctor to make the decision to operate or not based just on the information you have provided in this thread?  I would hope not.

Instead of asking this group if you are smart or dumb...why not go back to your doctor and ask him/her to list all of the positive reasons why you whould have the surgery....what are the negative....what is the expected outcome....what are the long term effects.....what are the long term side effects.....will this cure you....willl you need it again.....if it was his father or son would he do the surgery at this point on them or would he try other treatments.  The most important question...IMO....what happens if I don't have the surgery....what are my non-surgical alternatives.

Then you choose and no one has to choose for you

Good luck

I am fairly new to this disease and have surgery scheduled for May 11th. I feel your mind is racing and can sympathize with that. I lay awake at night thinking but have never been the best sleeper.

I do not take pain meds and other than Prednisone when initially diagnosed have only been on Methotrexate and was not on any meds for some time.

Initial GI thought surgery when they first discovered a stricture in my sigmoid colon, Called in surgeon at time of procedure. Over the last 18 months I have had four colonoscopies, three sigmoidoscopies, CT Scan , SBFT and most recent endorectal ultrasound. I have consulted with 6 GI's and four surgeons mostly because they cannot believe I do not have any symptoms. I do not have pain, bleeding, diarrhea or nausea. I have not lost weight and do not have fatique. I do watch my diet somewhat and do not have a lot of stool at times.

Why am I having surgery? I believe I have been tested enough , have researced constantly since being diagnosed, read this forum almost daily and my doctors and I have collectively  come to this decision. My stricture is deep scar tissue, it is not going to go away, I do not want to be on Remicade (which was the other option before) when I am not having any symptoms.

There has been active Crohn's at the stricture site for the entire time but only there. Someone posted that they would want to know how much disease activity was going on before sugery.

I may be overly optimistic but I am otherwise healthy now, cutting it out will get rid of the stricture plus inflammation, at least temporarily, and I do not have to worry about cancer within the sticture and possibly reduce the risk of cancer. Planned surgery with colorectal surgeon I trust, I like my present GI who has never pushed meds or surgery before but highly recommended it after he referred me for an internal ultrasound. They all know how hard a decision this is for me.

So not everyone is going to agree but thought I would reply to your question whether or not it was stupid to consider surgery.

As some people have replied also that there are others who have the surgery and you never hear from them again. I have three friends with Crohn's. One has had two rescetions and suffers a lot, the other had a resection 20 years ago and has had no probelms and no meds since.

Positive thoughts,