3 visit, 3 treatment recommendations

[akduck]

I have gotten so much information on the forum in the short time I have been reading / posting, and everyone is so great! I hope some of you can offer me some advice.
After about 5years of diagnosis of IBS, then lactose intolerant, I ended up in the ER in March with divericulitis - they did a CT scan and it also showed Crohn's in the terminal ilium. Waiting to heal so they could do a scope, I had a small bowel obstruction that perforated & abscessed- 8 days in the hospital, no surgery in the hope the abscess would self absorb.
Finally got the scope and diagnosis of mild Crohn's in May. The GI I was referred to said (in May) that once the abscess was gone he would start me on 6mp or 5asa. June 6 they did another scan and the abscess was bigger so I had surgery - the GI said after surgery / healing he would start me on Remicade. So, had surgery on July 5 - removed abscess & small bowel resection. The surgery went well. The GI dr now says he will start me on Cimzia, and gave lab and xray orders.
I am really confused. I have done some research on the treatments, and don't understand why he wants to use biologics if I have mild Crohn's. I felt pretty comfortable with him until I realized that in 3 visits he has suggested 3 treatments, then on the last visit I asked some questions that I felt were legitimate, and felt like he blew me off - they were should I get my immunizations up to date before starting treatment (another dr said I should, because the treatment suppresses the immune system), he just kind of snorted (really!) and said if you do that, don't get any with live virus. He had prescribed an increase in my omeprozole, which I was already taking, but wouldn't refill the prescription - told me to see my primary care for that. I almost felt like he only cares about the Crohn's and not me as a person.
So, I am having second thoughts about him, mostly because of 3 treatment ideas in 3 visits, and finally wanting to use one that seems to be for moderate to severe C, when I have been diagnosed with mild.
I have never had severe diarrheaha that lasted more than a few days, never passed blood that I could see, and haven't had bad d for a couple of years. Any advice would be appreciated.

 

[Manorexico]

As far as I know in general once you have an obstruction or abscess they like to hit the crohns with the big guns because chances of needing another more extensive surgery are higher. The biologics are usually quite useful in keeping it in remission once surgery is done.

 

[akduck]

Thanks Manorexico! My GI called me yesterday and we talked about how confused I am. I am going to go ahead with the tests he ordered, and have an appointment on the 18th to discuss all treatment options and side effects, and why he thinks biologics are the way to go now. he said we will then make the treatment decision together! Makes me feel much better.
There is just so much to learn about this, and I have been feeling a little blindsided by how fast things have happened and all the information!

 

[Thermo]

Doctors have a way of detaching themselves too much sometimes. My GI does it until I stop him and play the 20 questions game. Make sure you decide whats best for you but once you start getting an abscess it means the Crohns has escalated from mild. It shouldn't alarm you it just means it's going to take different treatment. It sounds like the doctors had differing opinions because of the different tests that started coming back. I would recommend a biologic because I have several abscess and 6 fistulas and the biologics are made for this type of the disease. Even as bad as my Crohns is I still never had normal symptoms the only symptoms I have gotten the last 10 years is pain every day so everyone is different and every case is different but the natural progression of the disease gets worse the longer you have it because it causes more damage. This is why 70-90% of Crohns patients will need surgery is because of the disease progression and the biologics usually allow you to go longer without needing surgery and give you a better quality of life.

 

[akduck]

Thank you, Thermo. I am pretty new to this and I know i have a lot to learn. I am now looking forward to my next appointment, and making a list of questions to ask.

 

[Manorexico]

See Thermo explained it a lot better than me! But yes basically you are not in the mild category anymore but in the severe. It sucks I know

 

[akduck]

You have both been very helpful! I guess I just thought that since I never had bloody stools, d so bad i couldn't leave the house, and a lot of pain, I still had mild disease even after the obstruction / abscess. I am grateful that my symptoms haven't been near some I have read about, and that I got this late in life (I'm 58). Thank you both, I really appreciate you sharing.

 

[Manorexico]

Everyone's symptoms are much different. I do not have bloody stools at all but thats because of the location of my crohns. With symptoms really depends on where in the intestine your disease is, plus even then everyone is different.

 

[SubPir8]

Hi,
My daughter was diagnosed around May of 2011 with CD after an extensive stay to determine the cause of her excessive weight loss and sluggishness. She had no physical issues inside other than the ulcers in the terminal illeum, however our GI diagnosed a severe case of CD. When we first discussed treatments, I had the misconception that we should start on the "light" end of the treatment spectrum to see if we could find something that worked that way. Wrong-the damage that CD does doesn't heal per say, as I am sure you have read here- it goes in remission.
So, after much confusion, research, argument, emotions, indecision (you get where I'm going) we went with Remicade. Worked like a miracle, for 10 or so months.
then we experienced a "flare", which remicade didn't help on its own. Again we went through the confusion and mistrust with our GI- we wanted to go to a new quick fix, something that "worked". Our GI was adamant about staying on Remicade and riding it out with steroids. We talked about getting a new GI.
Thank goodness we didn't. We tried weaning off of steroids a couple of times, which didn't work; then - poof, weaned off of steroids back to a healthy, energetic 12 year old.
Looking back, all the sleepless nights, arguments, accusations of not being concerned enough, it seemed like the one thing that was common through all of that was the communication. My wife and I didn't stop talking about it, with each other or the GI.
In short, I would recommend if the GI wants remicade, get remicade. And answers to your questions are important! They might not answer right away, so call them on it if they don't.
Best of luck and prayers.

 

[Thermo]

Since there is no cure for the disease you can still flare while on a Biologic, but if they work for you what they do is minimize the flare length and severity. What would have taken 4-6 months now can be stopped in 1 month (In my case) The other thing to think about is the damage each and every flare does by causing scar tissue. The longer it goes without being forced into drug induced remission the more damage caused and the sooner you will have surgery. The majority of surgeries for Crohns are due to the side effects of the disease stricture, obstruction, perforation things like that. Although they have scary side effects the remission they can cause if they work for you is beyond parallel in effectiveness and preventative for your long term disease course.

I fought for several years with my GI before going on a biologic, I refused and thought my disease was under control, until between my wife and my GI they finally made me realize that it was no where near under control. It caused wondrous results in me but because I had waited too long to go on a biologic it healed so much active disease that it caused a stricture that required surgery to remove. Which is why they start with Biologics now a days is to try and prevent surgery as long as possible. I am so much better than I have ever been in 20+ years but my advice is never wait on what a doctor suggests, if you trust them and they answer all of your questions just listen to them and don't wait. Waiting is something you can't do with this disease.

 

[akduck]

Wow - I have learned so much in these few posts - thank you all. I have decided to go ahead with the testing the dr. has ordered for biologics, and have an appt with him later this month to discuss which one is right for me. I am leaning toward Remicade. I talked to the dr. a few days ago, and it was a good talk, and made me feel a lot better about all of this. He said that he does want me to be involved in my treatment. I will bring a list of questions. I also had the great fortune and pleasure of meeting an IBD research scientist who has 30 years in the field, and she said to not be afraid of trying the biologics.

I will keep you posted on what I decide and how it works. I can't thank you enough for sharing your experiences and thoughts.