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07-10-2012, 06:19 PM   #1
Candrbeth
 
Join Date: Jan 2012
Location: Ohio
Advice on Surgery vs. Medicine

Good evening everyone! My DH has suffered with IBD and Crohns since around the age of 13. He is 39 now. Today he had an appointment with his GI in regards to his recent scan. Unfortunately, the Imuran has ceased to show any improvement or worsening of his disease, which flared up 5 years ago. This in turn has caused his GI to feel that DH should make the move to either Remicade or Humira. He came home with a ton of information on both drugs and asked me to look them over for him. He feels that I should help him make the decision, which is very hard as I'm not the one with the disease.

I know that Remicade seemed to be a pretty scary drug. The Humira carries a lot of the same side effects it seems. What I questioned to the doctor numerous times, is why are Crohns patients not given the option to have surgery to remove the diseased portion of the intestine? My husbands Aunt had it done, as did my stepfather and also the 18 year old granddaughter of close friends of ours. His GI stated that he has patients that are far worse than my husband and that it isn't an option just yet. I again questioned that if someone is still young, strong and somewhat healthy even though they have this disease, wouldn't they have a better chance at bouncing back from surgery?? The GI simply dismissed the option.

I cannot help but feel that this doctor is pushing a drug rather than doing surgery to give my husband a better quality of life. So, I turn to those that are here. Help me to understand that if some people have it removed and live better, why everyone is not simply given that option.

Candi
07-10-2012, 06:23 PM   #2
kiny
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Some push drugs, but the surgery option isn't good either atm, people who have surgery usually end up coming back again and again, recurrence of the disease after surgery is extremely high.
07-10-2012, 08:12 PM   #3
KWalker
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First off, welcome! I agree that some doctors really like to push certain meds (my old GI wouldn't even consider anything other than Imuran), and I can definately also see your thinking as to having surgery to remove the diseased area and everything being better. Even with where I am right now with my crohns and doing very well I would jump all over the opportunity to have a surgery to completely remove my crohns if I knew it would be gone forever and there are many people who have had parts of their bowel removed and now doing so much better. There's a famous football player with crohns and because of his surgery he's now playing professional football which we all know can be a dangerous sport which most crohns patients might be advised to steer away from. However with that being said Kiny is right when saying there is still a risk that the disease can come back. Theere are members on here who have had multiple surgeries and still have the disease.

As far as the humira vs remicade. Personally if it were up to me I would probably choose Remicade first. They both have their warnings but from my personal experience the Remicade worked MUCH better. I believe its a stronger medicine as well. We have a sub section in here where members discuss experiences, pros/cons, etc of all the different meds so I'm sure you can find a lot of useful info in there to help you and your husband and I hope you guys can find some answers soon to get him on the road to recovery.
__________________
Diagnosed:
Age 2 (1992)

Previous Meds:
Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
07-10-2012, 10:36 PM   #4
Emily
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It depends if the doctor feels the diseased tissue is reparable, and if so the doctor will recommend a drug. If the disease is beyond repair and/or not responding to drugs and is actively creating a block, that is when surgery will be plan. Most doctors try to avoid surgery if they feel there is hope to fix it with medicine.

It's different with every patient and every situation. The people you mentioned that had resections probably had severely diseased tissue that required removal. If your husband isn't at that point, I would see how he does on a biologic drug like Remicade or Humira. I know they can seem intimidating, but many people have amazing success with them, and I am one of them. Humira was and is a godsend for me. The side effects are very rare, and I have experienced not a single side effect with Humira.

In my opinion, both drugs are good first choices, it just depends if he would prefer to go to the infusion center or learn to self-inject. Whether he chooses Humira or Remicade is up to him, but either way I wish you guys best of luck and a quick remission to him!
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Age 24
  • Diagnosed with Crohn's at age 7
  • Partial colectomy at age 18
  • Total colectomy with ileostomy at age 23
infliximab & azathioprine
07-11-2012, 12:34 AM   #5
Snoflayk505
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Has he tried any of the IBD healing diets like SCD, Paleo, GAPS? I started the SCD diet 2 months ago and have for the first time obtained remission from crohns without medications Sharing my story with everyone hoping I can help someone else find relief like I have. Good luck to you guys. Here is the legal illegal food list and lots of other great information on this site. Recipe blogs all over the internet also.
http://www.breakingtheviciouscycle.i...llegal_a-c.htm
07-11-2012, 12:55 AM   #6
Jennifer
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If meds aren't working then surgery is a last resort. I know a lot of people think surgery is best because it removes the diseased section but a surgeon never knows how much actually needs to be removed until they get in there and there's always a chance of making up with a stoma which is very life altering, but even that isn't a cure for Crohn's since it affects people from the mouth to the anus (and some have issues in other areas of the body like joints, eyes, skin etc). There are people on this forum who have a stoma already and are now dealing with the disease attacking their stomach and esophagus, you can't remove everything. Surgery is not a cure and as mentioned the disease often comes back in that same site over and over again. Your chances of needing surgery increases every single time you have it done.

I didn't have my surgery until all medication options (at the time) were exhausted and that the diseased tissue was too far gone to fix. As mentioned, if its too far gone then medication wont work because nothing can heal scar tissue. But if it is possible to salvage, then medication is the right way to go because you only have so much bowel to work with.

As a side note, I'm in clinical remission right now which means I'm starting to deal with minor symptoms, the Crohn's is trying to fight back so my 6MP has been increased for the last time, if it doesn't work, then I'll have to go on Humira. I will gladly go on it before I have surgery again.

Good luck to you both and welcome to the forum!
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-11-2012, 05:52 AM   #7
NancyHany
 
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I always think of surgery as last resort personally. I was given the same choice a month ago, surgery while it instantly remove the damaged part, it doesn't guarantee that Crohn's wouldn't come back and usually it does as even if the entire colon was removed, it can come anywhere from mouth to anus. I just started Remicade myself if that failed I will go with Humira but I won't go for surgery till I'm sure there's no hope to repair the affected tissue.
07-11-2012, 08:55 AM   #8
Candrbeth
 
Join Date: Jan 2012
Location: Ohio
Wow, thank you so much everyone for the very detailed responses. I really need to get DH on this forum. You all are very supportive. Thank you for clarifying the issue regarding surgery. Those that we know that have had it, were lucky to not have any issues is seems. I didn't realize that it could continue attacking the body in that large of a span. He has two fistulas in the area where the large and small intestine meet. I wouldn't want him to go through a surgery that could threaten his health more, later on. I appreciate the eye-openers. Snowflayk, as per diet, his Dr. stated that there is no diet he needs to be on and that he will figure out what bothers him. I always thought that was absurd because I had read up on a lot of foods that Crohns suffers should avoid. We found out peanuts were bad for him only after he ate some and it landed him in the ER. I will share the links with him that you provided and see if he will be more open to some options. I can't thank you all enough for the feedback, it means a lot and I hope to gain a lot more knowledge here.
07-11-2012, 04:15 PM   #9
Snoflayk505
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Hi Candi yes peanuts are so painful to eat when in a flare. I always hated that diet advice from doctors. "Diet matters!" says doc. "Oh, ok what should I eat?" Doc say, "I don't know you have to figure it out".......lol These diets are a little clearer answer to "what should I eat"
As for what I eat during a flare, good old homemade chicken soup and endless banana, peanut butter, ice smoothies Stay away from anything with nuts, seeds, skins especially lettuce. If he does start a diet like this that link has the beginners guids. You have to introduce your body to pure healthy foods again and rid all the bad out completely. I hope he finds relief soon. this disease is a tough one. As an IBDer I am so happy to see you so supportive of his condition He is very lucky to have you.
07-12-2012, 05:20 AM   #10
DustyKat
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He has two fistulas in the area where the large and small intestine meet.
This is where you may well find varying opinions with Gi's as to the treatment path to take. The biologics may well assist with the healing of the fistula's, they are particularly good with peri anal disease, but they do not have a brilliant track record in healing ileal fistula's. That is not to say it isn't worth a go.

In our own case surgery was the only option when my son developed a fistula in this area. He could not have tried a biologic as he also had an abscess but the Crohn's specialist and the colorectal surgeon both said surgery was the way to go regardless of the infection he had.

Dusty. xxx
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08-03-2012, 09:09 AM   #11
Candrbeth
 
Join Date: Jan 2012
Location: Ohio
Thank you again everyone. He made the decision to start with the Humira. Unfortunately when he called the office to let them know, our health coverage does not cover it. They suggested he go on Cimzia instead. Anyone have experience with that?
08-03-2012, 11:25 AM   #12
Thermo
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Its primarily the same thing a TNF Alpha blocker, good to hear he chose the biologic. To be honest if he had the disease for awhile the biologic will most likely heal his open wounds and cause him to need surgery due to stricturing, this is a good thing and most doctors like you to prep for surgery by starting a biologic as it heals so much. I say good choice but dont be surprised if he needs surgery in the next couple of years.
__________________
Diagnosed-1992 (Age 8) Regional Enteritis 555.0

Meds - Humira, B-12 Injections, Vitamin D, Iron, VSL#3

Surgery - Open Ileocolic Resection July 24, 2012 (44cm removed 17 inches including appendix)

My Advice: Find a good GI, Primary Doctor, Optician, and spouse and stick with them, don't be afraid of the Biologics and 6 MP's if you hit the disease hard at diagnosis you fight off the natural progression and have a better quality of life.

http://www.youtube.com/watch?v=PC2VyIxiWmk
10-02-2012, 04:59 PM   #13
Candrbeth
 
Join Date: Jan 2012
Location: Ohio
Update on Hubby: Has been doing the SCD diet for over a month now. Feels great, bm's have changed from 5 - 7 times a day to one a day or less. No bloating, no gas and no pain. He went to see his GI for the Humira follow-up, and questioned his weight loss and asked if he felt ok. Hubby stated he has never felt better and said he has started a diet in conjunction with the Humira. He explained that within the first week of the diet he felt drastic improvement in his body. The doctor was not too pleased, and insisted that the Humira was the reason for the improvement...within 5 days?!?!? Needless to say when the hubby left there, he is considering getting a second opinion or changing GI's. The GI stated to him that he didn't suggest him going off of the Humira, but to do what he wants. He also said that he will not do another scan on him to check his improvement if he sticks with the diet, because doing scans often, is bad for the body. Shocking that he would do them if hubby was on the meds though. In short, Hubby feels that the job of a Dr. is to help their patient heal and the fact that he told him the diet isn't helping him and that he never needed to watch his foods in the first place, has turned him off from this Dr's advice. Does any GI actually support the idea of a diet changing a patient's lifestyle? I understand they are in the "business" to make money and making a patient well...isn't the best option for them, but do they not have a moral obligation to a patient? I'm sorry for sounding frustrated, I just really feel that we could have helped my husband's situation years ago, had the GI said yes, what he eats, does affect his body. I asked him that question point blank 5 years ago and he told me that hubby could eat what he wanted and if something bothered him, he would know. I even suggested hubby get a second opinion back then.
10-02-2012, 05:27 PM   #14
Pointy_ears
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I know from my experiences on our Nhs that GI's don't support diets formally. This is due to there being no significant scientifically proven link between remission and a type of diet. I do know that many people experience long and healthy remission on a healthy diet with supplements. So it's worth a try!

I can understand you not fully trusting your GI but I would seek a second opinion before your hubby stops his meds, mainly because for a biological agent to be prescribed it sounds like he may need it!

I hope your hubby keeps up a well deserved remission!
10-02-2012, 05:30 PM   #15
Candrbeth
 
Join Date: Jan 2012
Location: Ohio
Thank you Pointy I told him that I will be there and support whatever decision he makes, but as much as the drugs scare me, in reality...im just a "tad" worried if he doesn't take them. It's that darn battle that goes on in ones head. lol
10-02-2012, 05:36 PM   #16
Pointy_ears
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No I can understand, I nearly freaked out when I saw the side effects for Imuran! The important thing to remember is your husband is healthy for the moment and to really make the most of the good days!

But as a patient I can't stress enough how important that second opinion is if you are really unsure on something. Please keep me updated it would be nice to know how your getting on.
10-02-2012, 05:48 PM   #17
Candrbeth
 
Join Date: Jan 2012
Location: Ohio
No I can understand, I nearly freaked out when I saw the side effects for Imuran! The important thing to remember is your husband is healthy for the moment and to really make the most of the good days!

But as a patient I can't stress enough how important that second opinion is if you are really unsure on something. Please keep me updated it would be nice to know how your getting on.
Will do! Thanks for the support!!
10-02-2012, 05:53 PM   #18
Pointy_ears
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Any time, I've had meds and surgery and a lot of issues with doctors. And while I'm still recovering I know both routes carry significant risks and there own unique emotional battles!
10-02-2012, 07:18 PM   #19
Thermo
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I have always found that the doctors who I disagree with most are the good ones because they are telling me something I don't want to hear. I fought my current doctor and wife every second I could before taking Humira, same thing I did with smoking. Doctors devote their life to helping people, over the years the patients are what wear them down. Imagine your career now and having every single one of the people you deal with tell you they think they know better than you or you tell them something and they do the opposite, it must get annoying. With that being said I have gone through many doctors myself and you need to trust your instincts and find someone else if something is not right with him, just make sure that its for a good reason otherwise you might miss out on a good doctor because he told you something you were not ready for.

Also as a reference Humira worked that fast for me as well and still does, putting it in perspective people who go on a diet to lose weight don't usually see results in a week but injecting 'little machines' as I call it, will and should produce immediate response. One person on the forum who has really bad UC saw next day results with Remicade so it could be the Humira. But in my opinion its both. When you start eating well you start feeling well and that has a mental response, but I think it might have been initiated by the Humira. Hopefully he continues feeling well and stays away from surgery as long as possible, because it works wonders but its a life changer, keep us updated.
10-02-2012, 07:30 PM   #20
Thermo
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Also have a look at this thread about your concerns for the side effects of Humira, it might be helpful.

http://www.crohnsforum.com/showthread.php?p=494612
10-03-2012, 01:56 AM   #21
Jennifer
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I started seeing improvement after a few days from my first dose of Humira. It is possible to start feeling better that quickly. I wouldn't just stop the Humira and hope and pray it was just the diet. Avoiding your trigger foods is helpful during a flare but putting you in remission and keeping you in remission are different matters entirely.
10-06-2012, 11:50 AM   #22
Candrbeth
 
Join Date: Jan 2012
Location: Ohio
Thank you Thermo and Crabby. We have discussed the fact that medications and diet can do different things for different people. However I did read on here that prescribing a biologic for fistulas that are older- his could be as old as 20 years, is not beneficial in healing them. His GI stated that his imuran stopped working and his intestinal wall was thickening. According to the SCD book, the intestines thicken with mucus in a defense mode. Not to get completely gross here but when I read that section out loud to him, he was taken back because he says that's a major percentage of what he passes when he has a bowel movement. With so many different opinions and results from different things, it is really hard to figure out what will work in his case. My other worry is of course that he may be feeling great, but what is really going on in his body that we can't see. With that being said, I appreciate the stories and suggestions from each of you. It helps to know that just because it worked for one person, it may not work for another. Have a wonderful weekend everyone!!
10-06-2012, 01:21 PM   #23
Jennifer
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Mucus is a sign of inflammation. Chronic inflammation leads to scar tissue/wall thickening. Its important to get his disease under control no matter what to avoid future complications. That doesn't mean stop the diet but it doesn't mean stop the meds either.
10-07-2012, 04:10 PM   #24
Candrbeth
 
Join Date: Jan 2012
Location: Ohio
You are absolutely right Crabby! Thank you!!!
04-24-2013, 07:04 PM   #25
Candrbeth
 
Join Date: Jan 2012
Location: Ohio
Hubby is in remission He had a scope two weeks ago and the follow up appointment today. The Doc said the fistulas have healed. We are so beyond excited!! He did not decide to take a second dose of the Humira but chose to stick to the diet instead. He is still down in his weight as he lost 35 pounds total. However, he put some back on and is feeling good. We do not have to go back to the GI for 6 months. He thinks he can go all out and start introducing other foods back into his diet. Ugh. Scares me if he starts eating junk food again, but I can only be a nag so much. My thought is if the Humira really did take that big of a role, even though it was one dose, that he is going to put himself right back in misery again if he does not take care of his body.

Thank you for the advice and support!! It means a lot to have a place to come back to hear you all sharing your stories and know that we are not alone in this battle.
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