Back in hospital & terrified!

I haven't been on here too much for a while as I've been feeling so ill I haven't even had the energy to post!

Anyway, things came to a head and I was admitted to hospital 8 days ago for blood transfusions and iv steroids.  This is my 5th time in hospital and I thought it would be just like before, where I had the steroids and then went home, however this time my uc has not responded to the steroids and I am now at the end of my 2nd day of continuous cyclosporine infusions.  Unfortunately, the cyclosporine doesn't seem to be working either - I've had severe pain  & x-rays have shown some dilation. Still having blood, loose stools etc.   The surgeons and stoma nurses have been sent to see me and I am absolutely terrified! They are talking of operating on Friday if things don't come under control - I am so not ready for this, I never wanted surgery & am panicking and can't take it all in. I just didn't expect this, I never thought I  would get to this stage!

Sorry to rant, just so overwhelmed, terrified and can't seem to stop myself from crying constantly. Thanks for listening!

Take a deep breath....I know this is hard.

The same thing happened to me. I landed in the hospital for a transfusion and they were all talking surgery. I was scared out of my mind. I did not want surgery. My local hospital doesn't have a colorectal surgeon so I didn't have my surgey there. But I did ultimately end up having J pouch surgery for my UC. I had VERY severe UC so I didn't have much of a choice.

I know you don't want to hear this but if you have severe UC that cannot be controlled....the J pouch surgery is such a blessing. I am so happy that I did it and I have my life back. I am cured...totally. No more colon...no more UC.....no more drugs and scary trips to the ER.

I wish you the best...if you have any questions about the surgery...feel free to ask. I know it's scary believe me...It hasn't even been a year yet since my surgery so it's all fresh in my head.

 Joanna d

Hi, I know how you feel.  My 15 year old daughter just had her surgery in February.  Take down surgery was in April so she is just about 6 weeks post-op.  It was a hard decision.  She was on remicade  double dose every 4weeks.  Was in the hospital 7 times within a year.  They were going to try humira, but she decided enough was enough and decided on surgery instead.  Yes it was hard with the bag.  She managed it okay but only had hers for eight weeks.  The night after surgery she felt better.  I know everyone says this They are glad they did it.  But I can honestly say it was the best thing.  I now have my daughter back.  She know longers worries where the bathroom is, doesn't have the urgency anymore.  She is even starting to put her weight back on.  I know it is scary but if you are lliving your life in the hospital and home and afraid to leave the house.,The surgery would be the best thing you ever did.  But ony you can make that decision.  My daughter told her GI she wished she would have done it sooner.  Her Dr. told her she wasn't ready.  Good luck in your decision.  Let us know what you decide.

Did they say ileostomy or j-pouch. If they aren't taking about the j-pouch it may be that no one at that hospital can do it or you are not a candidate. If you are a good match for the j-pouch (not chrons, not too old) then you need to be transferred to a hospital where they have very skilled and experienced surgeons in the j-pouch. It is a hard and very complicated surgery. My take on the surgery is that the vast majority of people who have complications either had a bad surgeon or weren't good candidates. I am 6 weeks post takedown and I feel like I have my life back. My surgeon is a miracle worker (Cleveland Clinic). I did not like the bag, and feel so blessed that I was able to have the j-pouch. If they tell you you are not a good candidate for the j-pouch, ask why and get another opinion. Please, please don't get this surgery done at your local hospital (unless your local hospital is the Mayo or Cleveland Clinc, lol).

Good luck and really start to research this. When you are so sick, surgery is such a relief (after it's over).

My prayers are with you.  I guess try to look at, if you have the surgery you will probably be doing better than you are now.  I think the j-pounch surgery is over 90% successful.  Good luck and keep us posted.

I would be freaking out too.

     Joanna, don't let the idea of having a "bag" scare you.  I was not a candidate for a j-pouch.  I was 63 at the time of surgery, prednisone dependent for two years and had other health issues.  My surgeon even had me go through an echo stress test for my heart before he would operate.  Talk about being scared!    My surgeon trained at the Cleveland Clinic and is head of colorectal surgery at Pennsylvania Hosp in Philadelphia.  I live in south Jersey.  I had total confidence in him. He certainly was no risk taker.  I was just sick of being sick.  The bag is no problem at all.  There are several of us who post on the ostomy board who do not have the j-pouch. 

     I will pray your health improves.  Keep us posted and God bless.

Also remember, The J pouch surgery is highly succesful so don't worry about needing a permanent ileo.

Good luck!!!

Joanna....my son was terrified of surgery but he became very ill and we really had no choice. I will not lie. It is a long, difficult road through the surgeries. However, we are now about a year post his takedown and I cannot tell you how well he is doing. His life is completely back to normal and he is healthy in every way. All blood tests come back exactly as they should, he has more energy than he knows what to do with, and is living his life again exactly the way a teenager should. He has pretty much forgotten what UC life was like.

I think you will find that, down the road, you will look at this as a blessing in disguise. It will give you your life back. There is not a day goes by that I do not say a silent "thank you" to our surgeon who, in my eyes, is GOD....she gave me back my son.

Joanna....we are all wondering? Today is Friday and you are in our thoughts.

Hope all is well and they got it under control. Just checking on you...I was where you are this time last year.

Hi everyone, thanks for all your replies - your thoughts are all very much appreciated!

Well for now I still have my colon! On the Thursday, my blood results were better so the consultant said they would try switching me from continuous iv Ciclosporine to oral on the Saturday and if all went well I could go home on the Sunday.  I was so happy at the thought of going home, however that night was a really bad one and on the Friday I felt terrible again.  I was then told on Friday that that day's blood tests showed things were moving in the wrong direction and they would have to remove my colon that weekend.  I got myself into a bit of a state as I had been so looking forward to going home and couldn't stand the thought of being in that hospital much longer.  I was practically begging them to let me go, to which they refused, however the surgeon came to see me again, and thankfully he agreed to keep my bed and let me have weekend home leave as long as I came back Monday morning, or before if I got really bad.

Once I got home I started to feel a bit better, it was so good to be with my family and sleep in my own bed after 11 days in the hospital!  I went back to the hospital on Monday, and my blood results were a bit better, so I was allowed to go home on the Monday night.  The consultant and the surgeons still feel that I need surgery as my UC is not controlled, has stopped responding to steroids and is still active even with the ciclosporine.  They now think I should get off the pred and then have the surgery, provided I don't flare badly in the meantime - I will be having an outpatient's appointment next week, where they want to discuss it further.

Now that I have had some time away from the hospital and thanks to everyone's positive replies, although I would prefer not to, I now feel able to accept the fact that I will probably be having surgery!  Although I am feeling better than I did, I am far from feeling well and I am not enjoying the side effects from the Ciclosporine either.  It would be so nice to have my life back and feel normal again.  It would also be nice to have a good nights sleep without being in and out of the bathroom all night!

Thank you again to everyone who took the time to reply, all your responses have helped me a great deal and I really don't think that I would have reached the level of acceptance that I have without them!

 

Hi Joanna,

I had the Cyclosporine treatment too. It worked great for about 4 months and then I flared again. I tried just about everything...it was so frustrating. I hope it all works out for you...I know exactly how you feel right now. Surgery is a scary thing to have to face but believe me, you will be done with UC forever. It's a rough recovery but I tell you I would do it over again in a heartbeat!

If you decide to go thru with the surgery, it's a lot easier to deal with if you go into it feeling well. Unfortunatley I was pretty sick at the time of my surgery. I should have done it when I wasn't flaring but it just didn't work out that way.

Sending you well wishes and *hugs*!

Marianne

Joanna....I am glad you are feeling better. I want to stress that if you have the luxury of time to think about surgery you should be doing your research and finding the very best colorectal surgeon that you have access to. This is so important since there are a lot of judgement calls that need to be made along the way and you want a surgeon who has done zillions of these operations. I really believe that makes all the difference to a successful outcome. You may be very fortunate and that person may be at your hospital but I would check it out. A good place to start is with your GI and ask who is the best.