Surgery or medications to treat Crohns?

[Crohnsmomof3]

I am new to this forum, but have read posts for many years. I was diagnosed with Crohn's Disease back in 2004. So, the disease is not new to me. However, I am currently in a situation where I need to make a decision about medication vs. surgery.

Back story: I ended up with a large abscess while pregnant two years ago and narrowly escaped surgery. So, I have been on all of the biologics (remicade, humira and cimzia). I had bad side effects to each one. Remicade: arms went numb 24/7. Humira and Cimzia both caused horrible lightheaded spells where I felt like passing out all the time. So, my body doesn't like medicine.

Went to the doctor today and was told I can choose methotrexate or tysarbi, or do surgery. Feeling stressed about the decision and am looking for any input from anyone on this forum. Has anyone used these medications or gone through with surgery and have any input for me?

Thank you all. I really appreciate your time and thoughts.

Leslie

 

[afidz]

Hello and welcome, glad you joined!
Surgery V. Medication is always a very big decision and should not be taken lightly. In my opinion, its best to exhaust all other possibilities before resorting to surgery. Because Crohn's is an autoimmune disease, it is harder for our bodies to heal. You risk getting complications like infection and hernias. And you have to remember that surgery is not guaranteed to help either and you will probably still be on some type of med after surgery. I have never been on Methotrexate or tysarbi, and technically I did have a resection but I wouldn't call it that because they just sewed up a perforation in my colon (but its labeled as a resection). I have however had several surgeries on my abdomen and I have had severe complications after each one. I am going to tag Jennifer as she is currently on methotrexate and she had a resection several years ago.
I am not saying don't go with surgery, just weigh your options heavily before you make your decision.

 

[Jennifer]

Hi Crohnsmomof3 and welcome to the forum!

I'm a little surprised by the number of people who are asked to choose between one medication or surgery. I was not given such a choice. My GI tried all possible options before we came to the conclusion that surgery was the only option. If you are able to heal the section with medication and not need surgery for a long time after, then medication is the more obvious choice over surgery. Surgery creates a lot of complications as mentioned above. Its important to know that Crohn's often comes back at the resection site and we also only have so much intestine to work with.

For me surgery was the best decision because medication wasn't getting the inflammation under control and I was experiencing symptoms of partial blockages quite often. Partial blockages can easily become full blockages which can be life threatening.

As mentioned also though, medication will still be needed following surgery. Have you ever taken Imuran or 6MP? I take 6MP along with Methotrexate (my GI actually just called so this is going to be changing, he's upping the 6MP to 50mg and adding Allopurinol 50mg). I couldn't tolerate Humira or Remicade and my doctors feel that I'll likely have the same response to Cimzia. I'm wondering if a similar combination of low doses would work for you as well.

If you're mainly dealing with scar tissue then medication wont help it and if that scar tissue is causing repeated issues with partial blockages then I'd seriously consider surgery before you deal with an emergency situation of needing to remove a full blockage.

 

[Crohnsmomof3]

Thanks. I am of course leaning towards the medication. Just worried because of the reactions I have had to just about everything. And these drugs sound pretty scary to be honest. And so does surgery.

 

[Crohnsmomof3]

Have you ever taken Imuran or 6MP?

I had a reaction to imuran in the past. With 6mp, because of my history of the abscess, might not be enough. At least that is what I understand.

The tricky part is the medications (remicade and humira) actually put me in remission. They just also give me horrible side effects. It seems I am one of those people who are sensitive to medications. That is why these two new medications are a bit nerve wracking.

 

[If*]

Hello, have you asked about Enteral Nutrition (EN)? Is your problem inflammation or scar tissue?

Yeah, as above said ~ surgery can have after effects but it is sometimes totally necessary.

What ever you try I hope it brings you peace.:hug:

 

[Crohnsmomof3]

Hello, have you asked about Enteral Nutrition (EN)? Is your problem inflammation or scar tissue?

Yeah, as above said ~ surgery can have after effects but it is sometimes totally necessary.

What ever you try I hope it brings you peace.:hug:

I have not asked about EN. I live in a smaller town and just changed doctors. My new one is in Indianapolis. My current doctor referred me because of all of the reactions to the medications I am having. He doesn't know what else to do with me. EN has never been brought up. I might attribute that to my location and lack of experience (from my doctors) with this condition.

The main problem is active inflammation. I have a tendency to fistulize (sp?) with the disease active and just had a CT scan showing some crazy inflammation.

 

[Crohnsmomof3]

Tysarbi is out. I tested for the antibody (or what ever that is) and was positive.

It looks like methotrexate is my only medical option left. However, I have had reactions to imuran and now also 6mp. I was on 6 mp for a whole two weeks to bridge the gap between medications. Had a reaction.

Is it likely that I will have a reaction to methotrexate as well?

It appears that my body does not like itself or any medications...

 

[KayleighMeek]

I have bad reactions to lots of medications too. I had severe reaction to aza and 6mp but two years ago tried methotrexate and had no side effects, it did however start to not work as well and I am now on cimzia as well.
Methotrexate made me feel sick at first but I got used to it I take tablets but a lot of people do well with the methotrexate injections if they find the tablets to much to tolerate.

 

[Clash]

Although methotrexate is an immunosuppressant it is not a thioprine like both Imuran and 6MP. So having a reaction to those wouldn't automatically mean you would have a reaction to methotrexate.

I hope you find something that works to get you feeling better quickly! Hugs

 

[If*]

Sorry I took forever to get back on. I am going on 8 weeks of EN in the very near future. It is said to be good for getting the inflammation under control and could even bring about remission. I have a crazy amount of inflammation and fistulizing CD as well. On the up swing could also help gain some much needed weight and is nutritious. If you get a chance please look into it.

Hope today finds you doing better.
Much peace to you.

 

[Crohnsmomof3]

Update. Choose methotrexate. However, because of some pains I was having in LRQ, they did another CT scan. They found fibrostenotic disease and a partial blockage due to this. So, my doctors are now saying surgery. So, I am scheduled for December 13th. I will then continue methotrexate after the surgery to keep it me in remission.

Thanks again for all your responses.