Humeria or Surgery?

[cynleamit]

Its been a little while since I've been on here, but my Crohn's is progressing in a way such that some outsider info would be greatly appreciated.

I've been having abdominal issues since last October, and was officially diagnosed with Crohn's at the end of July. I have been on Prednisone since then. Before that was Budesonide (since December), which didn't really seem to do much. I was down to 10mg of the prednisone, and then had a very bad flare up at the end of September, and the emergency doc put me back up to 50mg (I'm at 40mg right at the moment). My other problem is that I am getting chronic bladder infections, and have had them since March. I'd go on antibiotics, and be fine, then go off and the symptoms of the bladder infection would come back. Case in point, I was put on Cipro and Flagyl when I was in the hospital, and have been off of them for just over a week, now there is uncomfortableness when I go to the bathroom, and my urine is not clear again. :frown: It has been a vicious cycle. I am almost positive I have a fistula between my ileum and my bladder.

I am meeting with my Gastro on Friday to discuss the possibility of having a resection. He has said my Crohn's is confined just to my ileum right now, and the nurse suggested that I may want to go on Humeria first. Now my body chemistry right now is all screwed up, and I don't know what going on another drug is going to do to me. I feel like a bit of a pickle. :ysmile:

In talking with my parents, husband, and friends (some of whom are doctors), when I made mention about the surgery, they all seem to lean towards that. My thoughts right now, is that if I can get rid of the diseased section of my ileum (and the fistula) and have a few years of symptom relief, it would be worth it. I'm 36 and have a lot more miles to go in this life.

Is there any thoughts about either option? Good or bad would be greatly appreciated.

Thanks.

Cindy

 

[emma turner]

Hi Cindy,
I'm 18 years old and have had crohns since i was about 12... I'm kinda i the same boat at the moment as i'm currently on humeria and it isn't working as well as i'd hoped so my specialist has suggested surgery as the next step and i'm thinking whether or not i should go ahead with it... it's such a big decision hay...

I honestly think that you should leave surgery until the last resort because it's such a large step and irreversible. In saying that, you would know how much more you could take of the pain and the stress of wondering whether or not it'll come back at any moment.

People are telling me that if i can deal with it, then i can. But we will only know when we're ready to have surgery and it'll be at the point that you just want it out and can't take it any more. It's such a horrible disease hay...

I hope this is helpful... as i said, i'm kinda in the same boat at the moment and it's such a difficult choice because at the end of the day it's our own choice and i'm only 18! hah..

I pray that everything goes well for you.

Emma

 

[Bottomless mummy]

Tbh if it gets to the point surgery is mentioned its generally a means of need.

I've had multiple surgeries due to I'll effects with medications not working......exhaust what you can with medications but think seriously about surgery if it's mentioned and needed because prolonging it can be more harmful than good.

You just have to remember depending on the surgery in question you could be laid up for a while.

I wish you well in your journey

 

[cynleamit]

Hi Emma.
Thanks for your insight. I'm just feeling a little (well, okay, a lot) confused about what to do. It is the stupid recurring bladder infection that is frustrating me to no end. When it rears its head in a bad way (lots of blood in the urine....) it really flares up the Crohn's. The last episode I had was some of the most excruciating pain I've had in awhile. If I could get rid of that, life would be a lot easier.

I hope my Gastro can shed a little more light on this. My husband is really pushing for the surgery. I really don't know what to do...

I hope all goes well with you. Take care.

Cindy

Hi Cindy,
I'm 18 years old and have had crohns since i was about 12... I'm kinda i the same boat at the moment as i'm currently on humeria and it isn't working as well as i'd hoped so my specialist has suggested surgery as the next step and i'm thinking whether or not i should go ahead with it... it's such a big decision hay...

I honestly think that you should leave surgery until the last resort because it's such a large step and irreversible. In saying that, you would know how much more you could take of the pain and the stress of wondering whether or not it'll come back at any moment.

People are telling me that if i can deal with it, then i can. But we will only know when we're ready to have surgery and it'll be at the point that you just want it out and can't take it any more. It's such a horrible disease hay...

I hope this is helpful... as i said, i'm kinda in the same boat at the moment and it's such a difficult choice because at the end of the day it's our own choice and i'm only 18! hah..

I pray that everything goes well for you.

Emma

 

[emma turner]

Yeah it doesn't seem very pleasant and if your in that much pain i would say to have the surgery also...
Maybe research other people that have had it? and see if they give you any advice...talking with your Gastro is a good idea, i'm sure they could refer you to people who have had it.
Such a hard decision.
All the best.


Emma

 

[Grumbletum]

Hi Cindy, if you do have a fistula from your ileum to your bladder, then yes surgery might be your best option. My very good friend Dusty advised me of this and she was right.
Having had the bladder issues you talk of for over two years, I know exactly how painful, distressing and frustrating they can be.
When my fistula was diagnosed, my GI wanted to add Humira to the drugs I was already taking, but when my symptoms seemed to be escalating quickly, he advised surgery instead and sent me for a pre-op and prescribed antibiotics to try to clear some of the symptoms.
When I got to the hospital, the surgeon there advised me that the fistula had healed and that they would not advise surgery if not absolutely necessary and they put me on Remicade for persistant inflammation. I had three infusions, finishing in October last year and felt brilliant until around June/July this year.
The fistula opened again and as well as the bladder issues, I also developed the delightful symptom of passing 'debris' in my urine.
I am almost three weeks post op and feeling very good indeed. I just wanted to share my story as it sounds like our situations were similar and I hope, whatever treatment you opt for, that you get a solution to your current problems.

 

[cynleamit]

Hi Helen.

Thanks for your information and I'm glad to hear that you are doing all right after your surgery. Did you have it done laproscopically, or the 'traditional' method? What did they say recovery time is?

I am going to be seeing my GI tomorrow, and I know he's going to want to push the Humira. As of this very moment, I'm feeling all right, I'd say around 80-85%. But that doesn't mean that tomorrow or the next day I will be. I hate having that uncertainty in my life, especially with my job. I teach high school math, and teaching is one of the only professions where you have to plan to be sick. Fortunately, my principal and vice principal are really understanding, and have said that I should probably go in for the surgery, just so I can have some stability back in my life. Even if it is for a few years. Plus I think being on the Humira and teaching will wreak even more havoc on my immune system seeing as teenagers are perpetual germ factories.

Like you as well, I've had 'debris' in my urine. It's kind of unnerving when you go and see floaty things in the bowl. I'd really like to get that taken care of once and for all. I'd never had a bladder infection before in my life until this past March, and now I can't get rid of them.

Fingers crossed that tomorrow will go well. All the best to you in your recovery.

Cindy

Hi Cindy, if you do have a fistula from your ileum to your bladder, then yes surgery might be your best option. My very good friend Dusty advised me of this and she was right.
Having had the bladder issues you talk of for over two years, I know exactly how painful, distressing and frustrating they can be.
When my fistula was diagnosed, my GI wanted to add Humira to the drugs I was already taking, but when my symptoms seemed to be escalating quickly, he advised surgery instead and sent me for a pre-op and prescribed antibiotics to try to clear some of the symptoms.
When I got to the hospital, the surgeon there advised me that the fistula had healed and that they would not advise surgery if not absolutely necessary and they put me on Remicade for persistant inflammation. I had three infusions, finishing in October last year and felt brilliant until around June/July this year.
The fistula opened again and as well as the bladder issues, I also developed the delightful symptom of passing 'debris' in my urine.
I am almost three weeks post op and feeling very good indeed. I just wanted to share my story as it sounds like our situations were similar and I hope, whatever treatment you opt for, that you get a solution to your current problems.