Surgery - Remission

[tiloah]

Well technically I am in remission and my surgery was a "success" so I thought I would post here. I am wary, it is still under a month since it was done and I don't want to jinx myself by saying I'm good to go, but I thought I would post that surgery was the right choice for me and I'm so glad I did it. The results were immediate. I went from excruciating pain and vomiting when I ate to being able to eat food without taking too much notice. I mean, it's simply incredible to be able to eat without the pain. There are seriously no words to describe what a relief it is. Before the surgery I was not living. It might even be worth the desperate dashes to the bathroom I'm dealing with now. Hehe. I have blood work in three months and a colonoscopy in six. If they are clean I might get to stay off of meds for good, so fingers crossed.

I just wanted to say if you are facing surgery, it might be worthwhile. The pain of the surgery was so much less than the pain I had before. I have a sedentary job and luckily I didn't even have to use all my vacation time before I was able to go back. So I just want to say don't let the word or thought of surgery scare you away. It might help you like it helped me.

 

[gypsigirl28]

:ylol2: I am so glad that you are feeling so much better since your surgery!!! That is awesome news, I pray the success continues for you for a very very long time..

 

[DustyKat]

This is sounding fab!!! :banana::banana::banana: I hope and pray it lasts a lifetime for you hun...:hug:

No mention of maintenance meds?

:mademyday:
Dusty. xxx

 

[AndiGirl]

It's been a long time coming to you Nicole. I'm so glad you are feeling better.:hug:

 

[hawkeye]

Nicolle:

It's great to hear that you are doing well.

Mark

 

[shnjmsn]

Snap !!! 3 weeks since resection and life has turned around ! Amazing. I know we're not all so lucky on here and some stories bring me to tears, so it's nice to hear some good news stories for a change !

I've gone from a similair situation to you, manic pain, couldn't eat anything, lost a shed load of weight again, to having bowels functioning as near as dammit normally, having a huge appetite and seeing everything work through as normal, it is amazing really......

Just on a small tapered dose of Pred, and now been put onto Pentasa for the first time after 20 years. Had been on and off Pred for many years, on Aza for 20 years which was stopped mid last year, and I swear that was the start of the flare up !

Good luck with it all anyway, sounds like it's going the right way for you

 

[Astra]

Great news Nicole!
Hope it lasts forever!
xxx

 

[Jennifer]

That's great news! I am also curious as to why there is no plan of maintenance meds after your scope. Of course its your choice but is that what your doctor suggested?

 

[margie]

I love these success stories. Thank you so much for sharing

 

[tiloah]

That's great news! I am also curious as to why there is no plan of maintenance meds after your scope. Of course its your choice but is that what your doctor suggested?

No! Not my choice. I am not really comfortable with being off of maintenance meds, but he says that is what the literature says to do. I am actually considering seeing another doctor for a second opinion about it. If nothing else the meds are like a security blanket.

 

[DustyKat]

Was it your GI or surgeon that said you don't need meds?

Dusty. xxx

 

[tiloah]

My GI.

 

[DustyKat]

It is so frustrating to have such glaring differing opinions when it comes treatment. I know we say that each persons experience is different, and that is true, but you would think that the medical profession, especially specialists, opinions wouldn't vary so widely.

Matt's GI was to the other extreme, maintenance meds most definitely but he also said research suggests that 3 months of Flagyl post op greatly increases your chances of maintaining remission over a longer period of time. Matt has just finished his.

Who is reading what literature??? :confused2:

Since you feel the way you do about the meds I would get a second opinion for peace of mind.

Dusty. xxx

 

[tiloah]

The plan for right now is to do bloods 3 months postop, and a colonscopy 6 months postop (sooner if I have symptoms). If at 6 months the colonoscopy is clear, he wants to keep me off of meds. If we get to that point, I will probably seek a second opinion. But I'm guessing my scope won't come back perfect, so for the time being I'm ok with going forward like this. I'm hoping to switch jobs in the interim so I don't have to worry about prior authorization and those crazy expensive meds while I wait for the new insurance to kick in.

But yes, the lack of consistency is frustrating... You would think they're all reading the same studies. :yfaint:

I'm pretty sure I'd off myself before taking 3 months of Flagyl!

 

[Vikki]

Diagnosed yesterday

I am 51 and went in for a healthy wellness colonoscopy. The results triggered a catscan, Prometheus test, another colonoscopy, C-Reactive Protein test and a flouroscopy test. They have diagnosed a fistula and Crohn's. I have minimal symptoms; in fact, no symptoms! My doctor immediately recommended surgery and a lifetime of immune suppressant drugs and I'm feeling a little overwhelmed. Should I do the surgery in hopes that it keeps me off the meds? Should I not do anything as I have no symptoms? The way my medical insurance is structured I'm not sure how easy it would be to get a second opinion.

Thanks for any ideas and suggestions!

 

[tiloah]

Vikki - Did your doctor diagnose you with Crohn's? Surgery is not considered a "cure" for Crohn's. Most people after being diagnosed are going to be on meds for life. I think in your case trying the drugs first, since you have no symptoms, might be a good thing to try to avoid surgery. But if you do have surgery, I would not personally advise someone to try to go without meds (even though that's what my doc wants me to do). I definitely wouldn't do nothing. Even though you have no symptoms, damage is being done to your body that can cause serious complications.

I'm sorry you were diagnosed with this awful disease! I understand how overwhelming it can be. I hope you find a treatment that works for you. Remember this forum is always here when you need it and we understand what you're going through. I'll be thinking of you. Welcome to the forum.

 

[Vikki]

Thanks for your response. I appreciate the point that letting it go untreated may be hurting my body. If someone asked me, I'd encourage them to take care of themselves. I guess I'm still a little in denial. It's really comforting to know this forum exists.