My first surgery

[iamdaniello]

This is all pretty new to me, I was a pretty healthy person, I'm only 25, yes I am over weight, but then back in October I was doubled over in pain in my lower right abdominal region. Went to the hospital where they did a CT scan and said most likely it was Crohn's disease. At this time I had no idea what this disease was.. I just freaked out and cried and decided I was dying. They sent me to numerous gastroenterologists where they did test after test and blood work and then finally after a small capsule endoscopy they said it was Crohn's disease. I was then put on Entocort, which helped for about a month.. and then the pain got worse. They then added me on Aziothoriprone (spelling?) and that didn't help. I was then taken off of Entocort and they added me on Prednisone. Prednisone made me actually want to eat again! It was awesome.. but then the pain came back about a week later.

About the middle of February I was pretty miserable.. could barely walk, or move or barely get out of bed the pain was so intense. My gastrologist was afraid that I had an absess and I was sent for an MRI.. indeed she was right and I was admitted to the hospital for 10 days.. they put a tube a in my absess to drain it out which worked pretty well. But I also developed fistulas and was given the choice or remicaide or surgery. I chose to have surgery because since my body didn't react to all the other medicines my doctors said I should have reacted to I might as well take the bullet. I'm pretty freaked out for this surgery, I have no idea how much of either my intestines will be removed. But why should I go through medicine if it doesn't work and that means surgery anyways? Ugh..way too much on my mind.

Danielle

 

[Astra]

Hi Danielle
and welcome

So sorry you're a Crohnie, but you've come to the right place for advice, support and info.
I've not had surgery yet, but there are plenty of people on here who can advise you on that
Have a look at the thread on Remicade ('liquid gold') before you make a decision
I'm hoping to go on it soon!
hope you get some relief soon
lotsa luv
Joan
xxx

 

[Nancy Lee]

Hello Danielle,

First let me welcome you to the forum.
I'm so sorry you have been going through so much pain
and now it has come down to surgery...

I would have thought if anything would have helped it would be the Prednisone
but it sounds as though with the abscess and fistula,
and if the doctors have tried everything else, you may need surgery.

Many here have had different surgeries so you will be able
to gather a wealth of information.

I would ask your doctor just what kind of surgery he wants to do..(get the name for it), how much intestine will be taken out, and what are the alternates.

It's good to have you on board here...
Sending you positive thoughts and healing hugs~Nancy

 

[danman]

Welcome to the forum, I hope you get all the info and support you need here.

I wouldn't jump into surgery straight away though.
You should try remicide first if it's being offered.

I know it helped me when I had fistula and abcesses.

Try to leave surgery until there is no other option.

In saying that, I ended up with surgery. But only after 20 years of medication.
Some meds were good, others fantastic, and others did nothing for me.

It's a balancing act. Remi/infliximab worked really well for me for 2 years, but I had to stop taking it.
Humira is another option. I had 3 good years with it, but after a few years, the effect gets diluted. It stopped working for me.

My advise would be to try to try the medication route first.

I know it's a scary prospect when you get diagnosed, but take a step back and research your options.

Enjoy the forum.

 

[iamdaniello]

Thank you for that advice Danman, in response to it I do have a few questions. I know probably some questions I should ask my doctor really.. but just needing advice. If I haven't responded to Entocort, Prednisone, or Azithoriprone then what happens if I don't respond to the remicaide or the humira? I end up needing surgery anyways. The docs have all said there could be complications after you start remicaide too if surgery is needed. I'm not sure really.. I think surgery is something that may help me along further in the long run. But yours or anyone elses advice is greatly appreciated. Thank you again.

 

[mussen]

Hi Danielle and welcome,
I'm sorry to hear you are in such a difficult situation at the moment.
I can sort of relate to your story, I got my crohns diagnosis (crohns in colon))within a few months of my first symptoms....... hit me pretty hard and quickly. I ended up in hospital for 3 plus weeks, I was in a pretty bad state.The dr's put me on steriods, pentasa and couple other things.
Anyway..........My GI gave me the remicade or surgery ultimatum!(He was worried about perforation) I had a day to make the decision!!! It was a hard to try and get my head around it!
I chose remicade as my first option...... I got my first infusion and saw improvement in 24hours!!!
That was back in 2002, I have not had to have any surgery yet ....(fingers crossed) remicade has always been my miracle drug and I have been on and off it for the last 8 years.
I know everyone is different when it comes to crohns and their sucess with meds, but I wouldn't give up on the remicade option just because other meds haven't helped.
I hope thats of some help to you and not confused you more!

Are you still taking azathioprine? It can take a few months to begin to work.

hope things improve soon!

M

 

[alexandros8]

Hi Danielle! Sorry your having problems! I would have to agree with mussen, even though I was once faced with the same problem, took the medicine route, and still needed surgery. All medicines are different and may react differently that previous medicines you've taken. I feel that surgery should be a last resort option. You want to have as few surgeries as possible, especially when we have this recurring disease. Just my $.02, but I would atleast try the remicaid. Hopefully you have the same experience as mussen.

If not... I wish you luck with your operation, and if you have any questions about it- let me know!

Best,

Alex

 

[iamdaniello]

No they took me off of Azathioprine.. thank god! I hated that stuff and it didn't do anything but make me break out in rashes on my legs! The only thing I worry about is I have fistulas and every doctor has said that medicine doesn't cure fistulas. So do I go for the surgery, or try medicine anyway? Thank you for your response. It's nice to know that there are others out there. My family and my husband have been a great source of support. But this helps with the lonliness. Thank you again.

 

[AAchic]

Hey Danielle,
I'm not too sure about remicade but I do know about the surgery. I just got it done, on my 6th day post op and I'm feeling great. I too was suffering from pain in the right abdomen right where the small intestine and colon meet. I had the surgery because I had a blockage in the small intestine caused by grown tissue (I'm pretty sure that's how they put it to me). Anywho if you have any questions on the surgery just ask. It's not as what I thought it would be.

 

[alexandros8]

Agreed. It really wasn't too bad for me either- mine was three weeks ago tomorrow.

That is a great question regarding the fistula and the medicine- and unfortunately I don't know the answer. Would be interested to see what your Dr. says though.

Whatever you choose - it is a step in the right direction!

 

[danman]

I didn't know that there was issued with Remi/infliximab.

Maybe you should ask about Humira. It has the same effect as Remi, except is an injection every 2 weeks (every week in my case).

I would always give meds a chance first and then opt for surgery as a last resort.

 

[Dustin]

Hi Danielle, and welcome to the forum. I have had recurring bouts of abscesses and fistulas over the years, and they cleared up after I started on Remicade. I get them now and then, but it is usually when I am coming up on another Remicade injection - they go away a couple of days after the injection. The thing with Crohn's is, it usually comes back in the same spot where you have surgery. There are only so many times you can have surgery before you run out of intestine. I would recommend holding off on surgery as long as possible, and exhaust all of your other options before doing surgery. I had surgery in 2002, and was good for about 1+1/2 years before my Crohn's came back again. Remicade on and off since about 2000 has helped me tremendously - I had to go off it due to switching jobs, so I lost benefits for a period of time, which is when I ended up having surgery.
I hope you have success in whichever route you choose to go. I know we are all strangers, but we do care what happens to everyone on here!

Good health and best of luck.

 

[pcbgirl227]

Welcome Danielle!! I can understand your fustrations as I was there myself last year. I was able to put surgery off by about 6 mths by doing Remi infusions and was in the same boat as you. I know the cost maybe a factor as to your desicion, but I would try at least 1-2 remi infusions first. Per docs at mayo, that is what they suggested to me and stated if by second infusion still having problems to proceed with surgery. Hope this helps and good luck!

 

[misscris]

:welcome: Daniello Sorry to hear you've had such a rough go of it as of late. It's a hard decision to make for sure. If it were me, I'd try any routes offered before surgery. Like others have said, there is only so much they can remove. I have been having thoughts/fears about that very thing. I got my diagnosis in surgery, so I had a resection already and I worry that I'll need another one. I didn't get the chance to do medications to avoid surgery but I would have if I had been given the chance.

Good luck with your decision. I'm sure it's a hard one for you to make and a lot of different things weighing down on your decision for both sides.

Welcome to the forum again. It's a good group of people here and a great place to be.

 

[Crohn's 35]

Welcome Daniello... I agree with everyone here. I have had two resections and the initial appendix removal. I would try the Remicaid first also. It didn't work for me but it could for you and surgery is always the last resort. There is no cure and the more surgeries you have the faster it can come back. I know the pain is awful but seeing as so many others here have done amazing on Remicade I would try that rout first. You have nothing to lose. Surgery for some is painful, my second one put me in a worst state. They operated when I was infected.. dumb idea. You learn alot as you go. As Alex says just "my 2 cents" I had to tell you my side too!