Scared of Future Surgeries: Need Support

Hi all, let me begin by saying thank you for this community and the welcoming, supportive energy it provides.

I suffered for years with ulcerative colitis (UC)..mostly sigmoid but sometimes pan. It finally came to surgery, or should I say, I finally had come to admit surgery was the only option.

I have a supportive husband and after 3 weeks in the hospital, we are home. I had never had surgery until now, I thought I was scared prior but since having the surgery, I am deathly afraid of having it again.

Things didn't go well, the surgeons nicked my aorta, patched it - went into the recovery room and it reopened. While on the phone with my husband, to let him know the surgery was complete, the surgeon's staff screamed for him to come urgently. The surgeon hung up the phone and left my husband hanging! It was midnight, my husband raced to the hospital to only wait for hours until the second surgery was complete.

I woke up the next day in intensive care, I later found out that I was resuscitated and required 5 liters of blood. Jeebus! Thank God, I only recall being re-sedated the second time.

Like I say, I am home now and scared of needing more surgery. It has been a month since surgery, I am doing ok...emotions are now bubbling up, I have been crying a lot this week. Initially, we opted for a jpouch, so the rectum was left in. I now have excessive bleeding and cramping in my rectum. My GI suggests this is par for the course as my UC was aggressive in this location. I have researched having the rectum removed but don't love the idea either.

My husband and I don't love the idea of a jpouch for so many reasons, the least of which is the risk of surgical mistakes. I noticed in others' comments that the 'bag' becomes second nature after a while. On a good day, I am at one with the bag, but lately, I cry at the thought that this is my life. Early days...

I should also mention that I have celiac disease and lupus. The lupus is being treated and mostly not an issue. The docs still wonder if it was brought on by Remicade or if I have always had it. This is one reason why they hesitate on jpouch surgery as lupus can impede healing.

I don't have specific questions, but general worries! Any support on any one thing that I have mentioned is so appreciated.

Hi Toodie,
Here's another instance of medical malpractice or lack of craftsmanship. How well have you checked out your surgeon's experience? Before my surgery, I knew my surgeon had performed over 400 such operations. He installed a J-Pouch and it worked fine for six years when evidence of high-grade dysplasia surfaced near my rectum. Then I had to get a permanent ileostomy. You must have absolute confidence in your doctor or else you are playing Russian Roulette with your well-being. My advice: find a surgeon who doesn't nick aortas. Get the very best doctor you can find, and be sure to know his/her level of experience. Good luck!
Prime

Thanks Prime, I was told he was the best. I wasn't well prior to the surgery and maybe should have done more research on his experience. I was in a teaching hospital and felt I was being given the best advice and leading-edge technology.

Wow, that was sure an interesting, at least, bit of drama. All I can say is keep on healing, darlz. Interesting about Lupus, though. I had Remicade. I think my skin's been dodgy since, or maybe the steroids. I've had chronic Crohn's disease for, go to think now, 21 years. Yep, since I was 23. Keep learning, don't let everything scare you away, and don't let it stop you. You're still at an early stage, or not. Haven't checked in 4 ages. We all don't just have lots of ops and lifes all gr8, but some people maybe!! Wait and see. I keep breaking down, keep getting back up. Ok, I'm on the other side of the world, so cheers from Australia. Have a gr8 summer, and I hope I have a nice winter. Hahahahahah, cheers mare --- mooza. Sorry primo if I'm writing or texting. It's 5am. Ta taaaaaaa. xx mare. Sorry, I said that. Oops, ranting. Seeya. Love, Melbourne, Australia. x

You are amazing. You have been through so much. You're so entitled to cry! Firstly, anesthetics do make you tearful. On top of that, you have a lot to come to terms with. Unfortunately, mistakes do happen in surgery. I don't think there is anything to be gained by dwelling on that. I too have my fair share of horror stories, and I do get angry sometimes, but I think mostly I am past that. I still have pity parties for myself. Off days are sometimes off weeks, but mostly I am just grateful to be alive. Only you can decide if you can cope with more surgery. I have had 6 and will shortly have my 7th. I changed surgeons twice before I found someone who could understand my concerns and didn't treat me like I was braindead.

Maybe the process of getting your head around it all will start when you can talk to the surgeon who did your surgery. Talk about what went wrong. If he is open to being frank with you, maybe you will be able to trust him. Otherwise, I think you may have to find someone else.

Keep us posted. You're incredibly fortunate to have a supportive husband. I will keep you in my thoughts.

Trish/Star

Hi Toodie,

I can only guess that your initial surgery was semi-elective, meaning that it was not a radical emergency situation. It appears that you had two, seemingly independent events occur, the ileo surgery and the emergency aortic repair. (Although, I am not sure what they were doing near the aorta other than the descending portion). Don't let the aortic surgery scare you away from future work on your GI tract. However, PB's advice is most sound, research, research, research before you take the plunge. Good luck and be well.

X_

Toodie, what a dreadful experience for you and your family. It's nearly 20 years since I had the pouch operation and there it now sits, doing nothing, under my stoma, and a hernia on top of both, it's very uncomfortable.
I wasn't told that UC can attack the rectum, once the large bowel is removed, that's where it settles, I suffered years of raw skin, bleeding, and stinging sensations, going to the toilet was so painful, I dreaded it, it brought tears to my eyes, and I don't cry easily.
Since having the stoma, 5 years ago, my rectum has eventually healed, but I had 6 months when both my stoma and rectum were active, and had to go back in hospital for further surgery.
Two hospitals were involved, and I trusted two very convincing consultants, and although the second one made some scathing remarks about what the first had done to me, he didn't do a particularly good job either. From my experience, it's a good idea to ask as many people who have undergone this type of surgery (and what better place than this site?) before making up their own minds, and not having it made up for them through lack of information and trusting the "experts". The recovery time also takes longer than is generally mentioned and the mental adjustments to a changed body take even longer, saying that though, I am grateful to be still alive, even though I have good and bad days!! And yes, indeed, you are very lucky to have such a supportive husband.

Hi Toodie,

I'm Marsha, and I've been following your posts. You've really been through a lot, and it will take you a while to get over the trauma and to adjust to the ostomy. I had mine at age 15, after 3 years of UC. Initially, the doctor left in the rectum for an eventual hook-up....sometime in the future. But after 4 years of continual inflammation, I convinced my doctors and parents that I wanted it all out. At 19, I was sure that living with the ostomy was what I wanted, but it was difficult to convince the "adults". I did have it removed, and I've never regretted the decision. Life with an ostomy was much more predictable than the continual ups and downs of the disease. I was able to return to school, date, get married, have children.....and my ostomy is just a part of my body. I have friends who have had the J pouch, in an attempt to avoid the "bag", but they seem to be in and out of the hospitals for repairs and complications. Nothing is perfect, but the ostomy has worked well for me for more than 40+ years. If you have any questions, please feel free to write.

Best wishes

Marsha

Thanks Marsha, it is great to hear others feel so confident and happy about their decisions. You are most correct in saying it will take a while, but as you've said, nothing is perfect. I feel my heart will one day find a home to rest with this new body.

Thanks again,
Toodie.

Oh dear, there aren't many on this site that can take a deep breath and realize we all have a difficult story, and we all get through it, not the least without support.

I see my surgeon for my first follow-up this Friday...fingers crossed that it goes well. I have no certain agenda at this point. There is still time for discussions to evolve, and mostly I want to heal and move forward. I do know that at some point, Friday or later, I will need to cross a few bridges.

The good news is, or my extreme positive thinking says, if I stay consistent with the medicinal suppositories, I will minimize the symptoms.

Thank you for taking the time to support me and share your story.

Toodie

Mooza, you sound like quite the character! It must be the Aussie air! I should consider living in a hot climate, maybe that would make it all better!
Thanks for the note!
Toodie

Amen, sista! Your words complement my thoughts precisely. I am scheduled to see the surgeon and stoma nurses on Friday, then the mortgage broker. Oh lucky me! Better yet, my husband gets to have a day off and accompany me. LOL.

As I said in my earlier reply, I am not sure how this appointment will go on Friday. As it is early days and no decisions are required at the moment, I will let it play out as it would. If the mood is right, I will present my thoughts to the guy. I will keep you posted... as the world turns.
Thank you for sharing your story and your thoughts.
Toodie.

Dear X, you are mostly correct, semi-elective would summarize, I had hamburger colon and no other drug options..so rather than sending me home to 'deal' we waited for OR time slot. And yes, it was two events, however, the aortic repair occurred both in the first surgery and the second. The first repair didn't hold and presented itself to the recovery team.

My understanding with the aortic valve is that it is quite near the transverse colon. Further to my limited understanding, my layman thoughts on laparoscopy is it has limited peripheral vision thus can be 'clumsy'. My GP suggested I was lucky that they didn't damage an organ, which he understands to be quite common in colectomy.

I truly don't know if I will ever overcome my fear of surgery, necessity may be the voice of reason down the road...for now, I heal and learn.

Thanks for your input and well wishes.
Toodie

Oh Toodie, you poor thing. I am a Surgical Care Practitioner in the UK and assist my colorectal surgeon in theatre and all around the hospital in many areas. He and I have a mutual trust, and having been diagnosed with UC from Crohn's, the time came when I had to have my colon out. My surgeon, who I work closely with, did this laparoscopically and I felt great after this, until 2 days later, I had some pain in my abdomen. I put this down to post-op surgery pain, but should have known better. I was taken to X-ray and had a gastrografin down my stoma, and the on-call surgeon told everyone to take me to theatre immediately. By now, I was beginning to feel light-headed and thought I was going to pass out but put all my trust in the surgeons that I was not worried. I woke up 5 days later in ICU after being transferred to another hospital as my hospital does not have HDU or ICU (this could only happen to a member of staff). It was found that I was bleeding (had to have 4 units of blood) and my bowel had twisted around the stoma. I was transferred back to my hospital where I was told that if I had been left for another 4 hours, I would not be telling this story. My hospital has a wonderful reputation for caring for patients, and the staff were amazing, but the hospital shuts 2 weeks over Christmas and I was transferred to another hospital. I acquired an infection from the 2nd op, which was a laparotomy (my surgeon tried to do it laparoscopically but there was too much blood). I was again transferred to another hospital for a pigtail catheter insertion under X-ray due to the infection (heyho! had enough by now). So, 2 ops, 5 transfers, 3 hospitals later, everything settled down.
I was off work for 3 months, and nobody told me about the mucus coming from the rectum, also I had bleeding. I had a flexi sigmoidoscopy 8 weeks ago, and it was found that the UC is now in the rectal stump. I don't think that there is any chance of having a pouch now, not that I wanted one in the first place, as I had been told so many things, but the surgeon I am
under in another hospital wants to send me to London to see a professor and have a chat.
You will have many times of shedding tears; it is the trauma to your body, and it has taken quite a pounding. In time, you will feel better and need to have a strong positive mind, and that will come. You will then be able to make that decision.
I have the name Napoleon Stomafart for my bag, and when it needs emptying, it becomes the privy purse. I would miss my little friend in a way if he went. Chin up and smile.