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Flaring Again - Surgery may be on the cards!!

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Ulcerative Colitis
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Posted 12/21/2009 12:31 PM (GMT 0)
Merry Christmas to everyone.  What a lovely Christmas present I have been given by going into another flare only 4 months after being off the steroids!!

I think my Consultant may be going to try me on an anti-TNF therapy injection (Adalimunab) but I think we will also be going to discuss the dreaded surgery option.  Needless to say, it really isn't something I want to have to consider but on the other hand I am SO fed up with the way things are.

I understand the 2 different options are colostomy/ileostomy or a j pouch.  Does anyone have either of these and can boost my spirits a little!!  I know from previous discussions that my Dr wasn't favourable of a j pouch but does anyone have any feed back on theirs?

Thank you for your time and advice x

Posted 12/21/2009 6:59 PM (GMT 0)
Sorry I don't have any advice regarding the surgical options....I do know that if it got to the point where meds weren't working for me, I'd have my colon removed.

Why isn't the j pouch an option for you according to your doctor?

It's unfortunate you're at that point, there are many who reflare after steroids. Have other meds been an option for you such as 6mp or imuran or remicade?

ARe you on any 5ASA meds?

quincy
Posted 12/21/2009 8:32 PM (GMT 0)
Hi Krusty1

I'm in almost the same boat as you... I have tried everything, up to and including Remicade. The Remicade worked GREAT for me, but unfortunately it seems to have brought out an underlying condition (MS) and I can't take Remicade or even Humira anymore. So now.. I wait.. As long as I can stay in remission from my one and only Remicade infusion I'll be happy, but at the first sign of a flare, I'm surgery bound.. I'm just crossing my fingers that I can stay in this remission for a looooooooooong time! lol...

I have opted to have the permanent ileostomy, I don't want multiple surgeries (2-step or 3 step). I want to have ONE surgery and be done with it for good. Plus, it's a quicker surgery, faster healing time and shorter hospital stay.. My GI supports my decision.. he understands that there have beena few cases of complications from the J-pouch surgery and SOME people have ended up having it reverted back to a permanent ileostomy. I'm sure MOST people probably do fine, but I don't want to even take that chance.. I'm a verrrry active person, don't want a lot of downtime and just want it done.. I have a friend who has a permanent ileostomy and she is very active, cute and wears the CUTEST clothes! You can't even tell and I mean she wears some form fitting outfits once in a while! So... that's my decision.. I just wanted to give you my input... Although it would be great if the meds can work for you! I wish I could still do Remicade.. it put me in remission overnight!

I know there is a girl here who has a J-pouch and she is doing great with it.. maybe she will give you a little input on her decision :)
Posted 12/21/2009 11:15 PM (GMT 0)
I have a perm ileo, and its great! doesnt stop from doing or wearing or eating anything, at all!
I wish it stopped me from eating things, lol. But it doesnt! I still wear my clothes from before, i dont have to make special concessions for it or change my life. Well, let me take that back, i did have to change my life, because when i was sick, i had no life and now that i have surgery i have a life and started doing things!
The only actual change i made was putting things in my left pocket instead of my right, lol.
But anyway, its not bad i promise having an ileo is so much better than being sick!
I know alot of people worry about their quality of life after surgery, but you have to weigh what quality of life you have now. i was kind of like, i KNOW i hate living like this, i know i hate missign everything and not doing things with my family and my son and such. And i might not like having a bag but at least iw ill be able to do those things.
And i actualy like havinga bag most of the time.
I chose a perm ileo, cause like susiebudy i didnt want the other surgeries or the worry of failure.
good luck!
Posted 12/22/2009 12:00 AM (GMT 0)
The people featured here are very inspiring:
http://www.greatcomebacks.com/en/stories/McKinney_Patrick.shtml
Best wishes with whatever you decide.
Posted 12/22/2009 1:03 AM (GMT 0)

I had jpouch surgery 9 years ago.  Best decision I ever made for my health.  Love my jpouch, love the freedom of no meds and no supplies.  The choice is very individual but the jpouch has a satisfaction rate of over 92%.  Yeah, lots of doctors are opposed to it, even mine 9 years ago.  However, he didn't have to live with the outcome and he also had a very uneducated opinion of the success rate. 

Sue

Posted 12/22/2009 1:58 AM (GMT 0)
Hi Krusty

I know the feeling!

I finally decided enough was enough (although frankly I dont really have much choice - as am now so anemic and steroid dependent that the choice was made for me).

I am getting part 1 of the JPouch in 3 weeks and part 2 (hopefully) in three months!

I am scared - but like you am SOOOOO FED UP - I want my life back - to work again - to have more energy for my kids and husband - to not be exhausted ALL the time - to not run around having accidents all over the place!

Good luck with your decision!

Best wishes,

Clicky
Posted 12/22/2009 4:29 AM (GMT 0)
Hi. My 18 year old son battled this disease for two years. He went through three major flares...each one worse than the one before and harder to get under control with meds. We hated the meds and he truly hated how out of control his life was. After giving remicade a serious try ( for him it was not the answer) he said that enough was enough and wanted to get his life back. In Sept he had the first surgery toward a J pouch. He was very sick at the time so he had his colon taken out and is, at the moment, living very well with an ileostomy. His next surgery will be in January to build the pouch. For him....this was absolutely the right decision. His body was so sick and literally, almost over night, he started to heal. Within weeks his blood work was improving greatly. He is now off all medications, has blood work that comes back NORMAL and has more energy than he can remember. For him the best gift is that he is now in control of his life. He can make any arrangement to do anything and he knows that he will be able to keep it. Of course he would rather have his body the way it was before UC but, even if the ileostomy proves to be permanent, it is truly a small price to pay for being healthy and living a normal life...I do not say that lightly...it truly is! The pros so out weigh the cons.

My best advice is to talk to many people and find the very best colorectal surgeon that you can. I have said before that this surgery is very involved and has a lot of judgement calls that need to be made, but for a surgeon who does these operations every week it is not really a big deal....However, I would not let a surgeon who is inexperienced with this operation near you. That is one concern of leaving things too long....If you should get really sick and end up in emerg and need surgery you will probably get the general surgeon on call...this is not the person you want.

This is a big decision and you need to get all and any questions that you have answered by qualified people. You have to weigh the risks of surgery (and maybe a J pouch) with the risks of long term medications and you also need to look at your quality of life. This is a decision that only you can make. We struggled with it for quite a while and our only regret is that he did not have the surgery sooner.

I wish you all the best and will answer and questions that you have.

Cathy turn
Posted 12/22/2009 9:50 AM (GMT 0)

Many thanks to everyone for your replies and you have certainly made me feel a bit more positive.  I went home and had a good cry last night and feeling sorry for myself so feeling a little perkier today.

One of the main problems is that I live on an Island with only one Gastroenterologist so you tend to have to take his word for everything.  We have agreed though that if we decide to go down the surgery route I will get a second opinion from someone in the UK before it is final (assuming it does't end up as an emergency).  I find it quite hard as you don't get the chance to meet other people here in the same or a similar situation, which I think would make it so much easier to know you are not the only one suffering and feeling like this.  I know there are others living here with UC/Crohn's so I will have to find a way to make contact with these people.

My currents meds are Asacol 12 a day, Asacol enemas twice a day, Azathioprine 100mg, probiotics, omega 3:6:9.  My Consultant has decided to try me on Adalimumab (Humira) starting tomorrow but it purely is a trial as I have UC and it has been more successful with Crohn's.  He did tell me yesterday though that this may buy me a little time if it is successful but I will be facing surgery in the next couple of years.  Time to face facts I suppose but deep down I still hope for some miracle!!

I just find it so frustrating as I am only 29, have been controlled by this disease for the last 6/7 years and it will continue to ruin my life.  I would love to be thinking about getting married and having children in the next couple of years but who knows what is round the corner for me and whether any of this will be possible.

Thanks again for your responses.

Posted 12/22/2009 2:54 PM (GMT 0)
Krusty1...It is so hard to be isolated when you are going through something like this. I think, if at all possible, that you should make that appointment for a second opinion and to get all questions answered. And then if you decide on surgery everything will be in place. It makes me cry to hear you say that you would love to be thinking of getting married and having kids but, with this disease, who knows?....my son who was as sick or sicker than you is living his life to the absolute fullest now....THINGS WILL GET BETTER....it is just not an easy road to travel.

If you have any questions for us please to not hesitate to ask. There are a lot of great people on this site and I am sure they will all have a lot to say to help boost your spirits
Posted 12/22/2009 4:06 PM (GMT 0)
My last 3 flares have been bad and each time I believe it's time for surgery but then I recover. I feel like I'm starting to recover again but might not. I am definitely better than last week's hospital stay.
I agree I don't want a general surgeon doing something in an emergency so when do I talk to a surgeon? I believe I would prefer J-pouch from the you-tube videos I've watched and the articles I've read. Assuming I go into remission again now and stay there another few years then I believe (if history repeats itself) I will eventually have another flare. I plan to try other techniques to keep it from getting as bad next time but if it does then will I be in an emergency situation where I cannot get a J-pouch done. I guess I'm asking, do I have to be healhty to have a preferred colorectal surgery (J-pouch) surgery? Or can I wait until I might get into a really bad flare again and set something up with a surgeon I've tlaked to beforehand?
Posted 12/22/2009 7:56 PM (GMT 0)
Burli...My son was very ill going into surgery. He had been trying Remicade and had been getting worse and worse. Surgery was done quickly but not in an emergency situation. He had been booked for the first of October but as he was getting sicker his surgeon fit him in much earlier. Once his surgeon was made aware how sick he was the operation was booked within less than a week. This worked out for us since we had already meet with the surgeon and had everything worked out ahead of time. If we had not, I don't believe we would have had the surgeon that we wanted. I would make another appointment to see the surgeon you like and talk to him/her about your concerns. I don't know how your system works. We are in Canada and the GI and surgeon have offices across the hall from each other, secretaries eat lunch together etc, and it was our GI who let the surgeon know how sick Dillon was and they decided between each other when to do the surgery.

Hope this helps,
Cathy
Posted 12/22/2009 8:34 PM (GMT 0)
Cathy,
I'm in Ottawa and we may face surgery for my daughter. If the meds are not able to bring her into remission, I would prefer surgery sooner than later to prevent further suffering on her part. Do you mind me asking what city your son's surgery was in? I'm not too confident in the surgeons my daughter has met with and would like to shop around (in Toronto) but don't know if that's possible. How did you get the surgeon you wanted?
Posted 12/22/2009 8:34 PM (GMT 0)
Thanks. I didn't know how healthy one had to be to undergo the J-Pounch surgery (or other surgery they prefer). I assume when it's decided I need surgery I'll have been in the hospital not improving on IV steriods, taking Imuran or Remicade, anemic plus other possible problems (fever) which may complicate an otherwise routine surgery. I'll ask the GI about it during my next appointment. I'll ask to talk to a surgeon.
Posted 12/23/2009 1:29 AM (GMT 0)
Hi Burli. Usually what happens is, that if you are not healthy enough, they remove the colon and give you an ileostomy. You are then allowed time to get off all the meds and get your health back. In removing the colon they leave behind the rectum and it's mucosal lining. The lining is needed to keep the rectum healthy, over the next few months, for the J pouch attachment. During this time you can still get UC in this lining but it normally does not cause a real problem since there is no poop passing over it and causing pain. Dillon has a "bowel movement" about once a day when he passes some mucus that this lining is producing. It is very common to see some blood in it. When the J pouch is made and connected this lining will be stripped away and only the "rectal stump" will remain...take home message...no more mucosal lining for UC to show it's ugly face in!

Dillon's story was just as you described. He was in the hospital, still had remicade in his system and was on IV steroids. The steroids really affect tissue healing and this is one reason they will not build the pouch while you are on steroids. He was also anemic (Hb of 62) and was transfused with 2 units of blood the day before surgery. This brought his Hb up into the low 80's which everyone seemed to think was fine for surgery. I think that the only time that it is really "emergency" surgery is if you get "toxic mega colon" and they are worried about it perforating.

Killcolitis....Hi...we are in Toronto. I don't know how old your daughter is. Dillon started out at Sick Kids and then, when he turned 18, we were sent across the street to Mount Sinai. As far as I know, they both have the best GI centers in the country. At Sick Kids our GI was Anne Griffiths and at Mount Sinai it was Gord Greenberg. Both are great but Gord Greenberg is the top of his field. The docs at Sick Kids told us that they were happy Dillon was turning 18 so they could send him to Dr. Greenberg for his opinion. People supposedly come from all over the world to see Dr. Greenberg. He set us up with Helen MacRae who was our surgeon and is also at Mount Sinai. She does most surgeries laparoscopically and even though she is fairly young, she does the teaching across Canada for this type of surgery. I cannot recommend her highly enough....she truly has been our angle. I believe that all you have to do is ask your doctor to refer you to any of these doctors. There is not a doctor out there, worth their salt, that will not allow you to get a second opinion and set it up for you. If I can be of any other help please do not hesitate to ask.

Best wishes to you both,
Cathy
Posted 12/23/2009 1:39 AM (GMT 0)
It is much much better to go into surgery healthy. I know its hard to make that decision when you arent flaring, but being on steroids makes it harder to recover. With jpouche sometimes if you are really sick theyhave to do 3 steps instead of the normal 2.
But i do agree that anyone who is contemplating surgery, should go ahead and meet with a surgeon, that way you have your questions answered, so that if you get in a serious flare and cant get out, you dont have to wait months to get in to see a surgeon as a new patient.
Posted 12/23/2009 4:09 AM (GMT 0)
Hey Burli :)

I have already had my 1st surgery consult and the Surgeon I talked to said it does make it easier on the patient and the surgeon if you are more on the healthy side when you have it done. Being in a flare can complicate healing, complicate the surgery and just make it harder for you and the surgeon overall.. I am going to try and put it off as long as I can, but I did schedule another consult on January 25th.. (the soonest I could get in) but they also told me that if I get worse before then to call and they would get me in sooner... I figure if I go in on the 25th and they tell me they could do it in Febuary or March, I'll probably go ahead and get it over with.. (as much as it TERRIFIES me) Plus, I'm not getting any younger and if I do it now instead of a while down the road, I will be more likely to heal better just because of my age too... Plus.... look at the bright side.. No more colonoscopy prep... EVER.. lol.., no more risk of colon cancer... Those are good things :)
Posted 12/23/2009 4:28 AM (GMT 0)
Killcolitis. I have just realized ( I knew before but had forgotten) that your daughter is very young. I saw one of your other posts. That would mean that you could be seen by the docs at Sick Kids. They truly are amazing. As I sad, we did not end up with our surgeon there because my son was too old but I have heard that those surgeons are amazing. I would try to get in to see Anne Griffiths who is the head of the GI clinic. I am pretty sure that you have to go through the GIs to get to the surgeons.
Posted 12/23/2009 4:56 PM (GMT 0)
Cathy,
Thanks. I've heard great things about Dr. Griffiths as well and will be pushing for a referral. It would make such a huge difference to me knowing my daughter's care was being handled by someone I had confidence in! My closest friend was an emergency nurse at Mount Sinai for many years and says all of the GI surgeons there are excellent. I'm glad your son is healing and no longer has to battle this terrible disease! I hope his jpouch surgery goes smoothly and he is able to leave his uc days behind him.
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