Surgery for my UC? Didnt think i was there yet...

[gibby]

So hi, havent written for a while, but been keeping up with you all, and hoping everyone is doin ok just now....

Had my 6 monthly clinic appt yesterday, and got a bit of a shock! Those who havent heard my moaning before, i have had UC for 19 years, diagnosed at 8. Been on Pentasa all that time, and have been on Azathioprine (imuran) for the last 7 years. In the last year i have moved up to maximum dose of Pentasa,now 4g daily, and they dont want to move up anymore on my Aza, on 150mg. Had a bad flare at the start of the year, needing a long course of Pred to heal, but on the whole i get 2 or 3 flare ups a year, normally needing asacol or predsol foam to treat, but need a course of oral Pred once every 2 years or thereabouts.

I thought i have been quite a good UC patient, when i am well i am fab, but obviously when i am ill i do feel it,lose weight, appetite, bleed, all the usual, and recently over the last 18 months i have noticed a big change in that i am more aware of it now, the pain, nausea, intermittent appetite, and the lovely change in BMs from time to time. prob getting around 4 mild flares a year and 1 more severe..

But i went in for my second clinic appt yesterday at my new hospital, recently moved hospitals after being with the same GI for 13 years, and was asked how i was, then reviewed my meds, and then he said, "well looking at your meds i can only really see one option left for you if you have any further flares...there is nothing more we can do"....meaning surgery. He kept saying that he had to put it out there and mention it more as i clearly wasnt able to wean off or go anywhere with my current drugs, and he doesnt want to put me on any more steroids/pred again. If i get a further flare needing steriods, i need to consider colectomy.

I brought up the fact i still thought i had options with drugs like MTX and Infliximab, which he said was not suitable due to the high risks of cancer, and MS has been reported with infliximab, i said i thought the benefits would surely outweigh the risks, but he seems to think that its pointless to risk it when i have a "cure" with surgery?

Now i am not doubting the merits of surgery when it is required, and i always know that its going to happen one day, but i didnt think i was there yet? And he seemed so sure that this surgery will be a miracle cure? now i didnt think i had a bad quality of life at the moment, and looking at getting a pouch, well it seems things will change a bit, increased BMs, risk of pouchitis, low fertility etc...i just want to wait until the last possible moment for that!

i just feel a bit shocked thats all, i see a good few of you guys on here on these drugs, and it works for a lot of you, so i didnt think i was at the end of the line yet! any thoughts? or am i just kidding myself...?

thanks guys,
Yvonne x

 

[Crohn's 35]

Hi Yvonne, glad you came back. Wow that is shocking. There is a cancer risk but very low, and there are risks with any drug. There are many people who have pouches and do very well. I have not had to ...yet... but I know it could happen some day. It is a serious decision and I know you are scared. I too could face a 3rd resection... I have so far been lucky but I know it could happen. I hope what ever you decide, you are ok with it. I am sure othes will see this and comment. Sorry I can't help you more. Big hugs though, I am thinking of you! BTW keep reading your signature, and keep smiling!

 

[gibby]

Aww thanks pen, its good that i can dip in and out of here, you guys help so much. I realise that even the drugs i am on already have a big risk for skin cancers and things, so didnt really get what he was trying to say.

I got the impression that he couldnt understand why i was putting myself through all these medications when i have a "cure" in surgery, and thats what he kept referring it to.

I think i still dont entirely trust my new GI team yet, and thought they would wait a while for me to settle in before bombshelling me! but i liked him because he was very blunt and to the point, and answered all my questions, but i just want more fight in him....well....dont know what i want really...
got some thinkin to do!

and thanks! i am smiling as i write this now!

hope you are doing ok x ooh and thanks for the hugs:rosette2:

 

[Crohn's 35]

I am holding my own.. thanks for asking! Ok from what I remember with UC if you cant control it with drugs, your doctor is right, UC can be cured when you have the surgery and not sure how old you are, but if you are young, it could be the answer for you because you can have a long healthy life. I have Crohns so no matter what I do, I am stuck with the disease. I see what your doctor means now. He is right but.... you need to think if it is a vanity issue? If I had the choice of meds that are risky or have an operation, I would have the operation and have a great life! Let us know what you decide. It is not the end of the world, but the start of a new one!!!

 

[Rossy]

Hi,
Even though your GI is suggesting removal it would still be elective surgery so unless you were sure it was the right thing for you, you would'nt have to have it.

Another UC thread was put up recently (BullDozerKing) whose Doctor suggested for him they would try Aza, then Remicade and if neither works it would most likely be surgery, so it is interesting the different approaches, but to me that one makes more sense.

You don't go to Ninewells do you?

cheers

G

 

[gibby]

Ha...yup i am at Ninewells, not been there as a patient long really,but been working there for about 10 years! it was my second clinic appt there and with a different consultant too. So dont know if they maybe all have different opinions. I suppose it is right, that with surgery it may cure me, but they have always been a bit grey on the whole Crohns/UC thing, my worry is if they take out my colon and it turns out their first thought was the right one and i actually have crohns!

I know its worth thinkin about, but to be honest, i'm fairly happy with my current treatment, and didnt think i was that unwell. But yeah, its not even a vanity thing i dont think, i think its the fear of not having a "normal" habit again, i mean i have more good "normal" days than bad with my UC, but with the colectomy and pouch, i dont know, i see lots of things that make me think its a worse option and has worse side effects than what i have now..

...but if it about sparing my bones from the steroids and making me live long into my grey years then i'l do it.....just want it to sink in first...

 

[Rossy]

Ninewells has a very good GI clinic, they also do a whole load of research into IBD and my experience of the consultants there is very good.

Yeah it would be a tough decision to make, easier perhaps if your quality of life was very poor as a result of the UC.

Hope you get better soon

 

[gibby]

i know what you mean, i got really sick a few years ago now, and was on the theatre list for the next day, but had persuaded my GI at the time (was seen in Stirling) to give me another day, and i got a bit better, and avoided surgery then, but...
..sometimes i wonder if it wasnt a choice and a necessity then it would be easier, i really dont want to make the decision without a push...sounds awful!

But its early days still, and NW seem to know what they are talking about, been asked about a trial into synbiotic treatment that they are doing so may give that a bash first if i can.

you still seen at NW? How did you guess about me? i must speak Dundonian in my typing without knowing....

Thanks for that tho G, hope you are alright just now too x

 

[DustyKat]

Hey gibby,

Yeah, I can see where the doc is coming from about the surgery and a cure for you but it's still something you need to be comfortable about. It's not hard to tell from your posts that you haven't reached that point yet. I think until you see another doc or two or three and they all say the same thing you will be doubting and pondering the what ifs if you had surgery now. Good luck with your decision and please keep us posted on how you are doing and what you decide.

Take care,
Dusty

 

[Lisa]

From my experience - I had a doctor that every time I flared he pulled out the 'you really should have surgery - next time you will need surgery'.....I kept putting it off because I wan't ready mentally for it.....over 15 years later I am still surgery free.....

Personally I see surgery (right now) as a last resort - if there aren't any meds out there that are working (and I do still ahve a few left if Remi stops).....at the time my old doc was recommending surgery- Remicade wasn't known about or even mentioned.....it wasn't until I moved and changed doctors about 10 years ago that I heard about Remicade - and at the time I was told I wasn't 'sick enough' for it...that was before the fistulas.......

I think you need to go with what feels right for you, do your research and if need be get 2nd, 4rd or even 4th opinions....

 

[theend2]

Don't get the surgery. My gastro doc told me that everyone he knows who has had the surgery within 2 years they had pouchitis. That means right back on the meds you were trying to avoid with the surgery. Just a matter of time that it moves somewhere else. They have new meds coming out every year. yeah I am only left with prednisone working for me but at least I still have my colon.

 

[Sue-2009]

I have the pouch. And now 4 years later, I have crohns. It was a VERY tough surgery to recover from, but--I would do the pouch before the bag...My opinion...Now, I don't know ... if I was younger, I might just do the cell thing a ma bob. Sue

 

[Jennifer]

I'd get a second opinion if my doctor refused to prescribe other meds and pushed surgery. Surgery should always be a last resort. If you have a broken arm and your doc removed it would he also call that a cure?

 

[Rossy]

you still seen at NW? How did you guess about me? i must speak Dundonian in my typing without knowing....

Thanks for that tho G, hope you are alright just now too x

Yeah I'm still on their books :smile: They'll see me anytime i want which is pretty reassuring. But I'm doing ok just now, cheers.

Do you have the number for the IBD nurse at NWs, if not i could pm you it?

Nah there was no clue in you typing and I didn't necessarily think you were from this area, I just guessed that there was a chance you'd be at NWs, not really expecting you to be a patient there.

Hope your doing ok,

cheers

G

 

[Astra]

Hiya Yvonne

great to see you again! hope you're ok?
This is a toughie, your head must be cabbaged!
There are alternatives to steroids, like the biologics. My friend with UC, she is a bleeder, has just been approved Remicade.
If it was me, I'd exhaust all other meds first, like Remi or Humira, aza or 6MP, I'd even take the Pred again!
I would question them, ask them how much of your colon is affected? If it's less than 2 thirds, then surely they can delay surgery for a few more years with meds?
There's a lot to consider Yvonne, and the fear of it relapsing or it being Crohns.
You'll make the right decision, what's best for you, and only you can make that, not them! I wish you well hun, and keep us posted!
lotsa luv
Joan xxx

 

[Silvermoon]

.... or what about, even if you DO decide surgery, going with a temp ileostomy or something, just to give the colon a rest and a chance to heal before they take it all out?

There are pros and cons to each side... do the meds so you keep your bowels longer.... however the meds can have some nasty die effects too - although not for all people and not everyone gets the same side effects.....

Whatever happens, only you can make the right choice for you, and I know you will, and we will be here to support you all the way...

Big squishy hugs....

 

[BulldozerKing]

I am going to try pigworms, fecal transplant, and whatever else there is before surgery should I come to that... just starting imuran today so my body is trying to get rid of my colon it appears... Try it all before you remove the tube.

 

[vonfunk]

I say exhaust all the options. I've burned through all of mine in less than 2 two years. I'm hoping to at least hit the 5 year mark before going under the knife. I almost lost my colon during my first flare up, my GI has been suggesting surgery since then.

 

[BulldozerKing]

Some possible good news in the latest Inside Track from badgut.org --- AFMNET Researchers -- " Researchers at the University of Guelph say that help is on the way. They have detected specific amino acids and peptides in chicken eggs that seem to reduce colon inflammation and are now developing products that could deliver these substance to consumer". "They found that pigs with a mild, temporary, colon inflammation that ingested the cysteine, tryptophan, or peptides were back to their pre-inflammation state in FIVE days"

Kind so wish I was a pig

 

[gibby]

You guys are all pretty awesome!

I have had a few more days to think about what he said to me, and why, and yup from what i read here and elsewhere in journals etc, personally i dont think it makes sense for me to go for the JP just yet. My quality of life on the whole is good, an despite the flares, in between times i eat and drink normally, have fun, can hold down my busy job and socialise without problem. Sure i am more aware of my UC recently, but thats not to say i am at my wits end with it. But i feel he is super Pro-surgery, and altho it is good to have his support when i do reach rock bottom, i still want my surgery to be last resort.

The whole side effects of a pouch and the concerns over my diagnosis, means i have to consider it more carefully and be sure it is going to improve my quality of life. God forbid i have a year of back to back flares and it would seem that surgery would be the best way to improve, but as i am not there yet i think just hold tight.

I dont think my Doc was wrong in mentioning it, and maybe it is his way of setting the seed early so in a few years time if we get to that stage i will be more prepared.

He just gave me a wee fright tis all

And you guys have calmed me right down....i can always count you all when i have nowhere else to turn!

My Mum gets worried about this sort of stuff when i mention it to her so i cant really chat to her, or my sisters as they dont like hearing about my gory stuff..Dad just gives me a cuddle so thats ok

But to really talk it through, well thats what CF is made for!

Cheers

On a side note, a research nurse had approached me before my appt, and said i was eligible for a new clinical trial which is about the use of "synbiotics" in UC, which is like a pre and probiotic therapy manufactured in a way that it can actually reach the large intestine without getting digested, and can improve the intergrity of the mucousa, promoting cell growth and healing when in a flare, and shortening duration of flares. Now it is double blind so wont know if it is a placebo or not, but at the end of the 6 months (its two capsules a day) you get told if you are on it or not, and you can keep taking it if its helping...

worth a shot?

Rossy-thanks mate....have the IBD nurses number but thanks! you made a good guess! was just incase i was being proper dundonian in my language-i try to hide it

Bulldozer...yup, being a pig does sound appealing...would save me getting stressed about this thats for sure, lying around chilling in mud all day? sign me up