Seeking Advice for Ostomy Surgery and Rectal Removal

Hi, I'm Jenn. In October of 2009, at 31, I was diagnosed with a massive soft tissue Ewing's Sarcoma/PNET (usually a Children's Cancer, lucky me [yes, I'm a bit sarcastic at times]) wrapped around my inferior vena cava, abdominal aorta, and mesenteric artery. I was not supposed to survive 2009, much less still be here today. I went through a brutal 5-drug chemo regimen, 2 failed resection attempts, acute renal failure, 31 days of full abdomen radiation, and lots of watching and waiting. All in all, I've had a G-tube for feeding to get around being blocked from the tumor, a G-tube after my second surgery for decompression, TPN, and all that fun stuff. My bone marrow is suppressed, so my hemoglobin (blood) and platelets have not been in the normal range since before my cancer was found. Needless to say, along the way, I had bilateral nephrostomy tubes installed to drain my urine, so I've had pee bags for 5.5 years. The tumor, radiation, surgeries, and resection due to blockages caused a lot of scar tissue and adhesions, not to mention that at the beginning of things, the blood flow, mesenteric artery, was cut off for a while due to my tumor being pretty massive in size, 12x17.5x22.5cms. Needless to say, I have a lot of scar tissue and adhesions and dealt with a lot of blockages for a number of years. In December of 2012, things got further complicated when my kidneys failed for good and I started dialysis. Somehow miraculously, in January of 2013, I was found to be NED (No Evidence of Disease, aka no viable cancer could be found). My first year on dialysis, I had a lot of blockages, then for some reason about 2 years ago, I started having constant diarrhea and have been dealing with tests from the GI specialists for the last two years. Needless to say, if I want to leave the house, I can't eat for 6-8 hours ahead of time so my system can empty out. I basically end up in the bathroom 5-10 minutes after eating until my system has emptied out. The quality of life I have strived so hard to regain is gone, as I know where all the bathrooms are the few places I go to. As a result, what little social life I had has died, as people usually want to go out to eat and then if I eat, I end up running to the bathroom and am stuck on there for some time. I also carry a spare change of clothes everywhere I go. So basically, having no luck with the GI specialists' tests, suggestions, prescriptions, and whatnot, I have been given the diagnosis of short bowel syndrome, as I lost some of it and other regions of my GI tract as well to resolve prior blockages. Needless to say, I've kept a food diary, took an antibiotic that my insurance did not want to pay for to try and combat an overgrowth of bacteria in my GI tract, have taken the max dosage of Imodium for years, am already on opiates for pain, and they don't slow my system down any. Needless to say, I am at my wit's end, and some form of ostomy seems like it will be the only way for me to regain some quality of life and a best friend other than my toilet. My bottom is so raw, and they have tried prescribing lidocaine gel, and that only goes so far. Plus, I have had polyps found in my rectum. So from the layperson standpoint, my PCP and I are thinking that an ostomy and removal of my rectum would be the best bet. I also have horrible hemorrhoids/piles that need to be dealt with, and that is kind of impossible with my bottom always being raw and going to the bathroom 20-30 times a day. Needless to say, I am due to see a colorectal surgeon later this month to discuss my options. I realize an ostomy and stoma come with their own problems and potential for blockages. Just I need some relief, and I am worried that at any time, I may go septic due to my raw bottom and amount of output. I've tried everything from essential oils, sitz baths, a steroidal cream, and various other things to help heal my bottom. As it stands, I can't eat for 8 hours prior to dialysis and have to pop a Hydromorphone to be able to sit still for almost 4 hours (with pillows under me) and have had to be taken off the machine to go to the bathroom mid-treatment, which too freaks me out as it increases my chances of infection as well. I realize an ostomy will be a perfect thing, and that they can be a pain (had to use a bag for 3 months when my one feeding tube refused to heal up on its own like it was supposed to start doing within minutes of removal). Needless to say, I am here to educate myself as much as possible before I take the plunge into becoming a multi-bag lady, and I am not taking this process lightly, as I realize it is a forever thing. Just it seems like it would be the only way that I will be able to get some relief and allow for my bottom to heal and circumvent more potential cancer risks with the polyps and whatnot going on down there. I'm really scared and nervous, but I realize I am still here for a reason. I'll be going with my neighbors to an ostomy support group next month to hopefully make some good contacts and talk to the RN that runs the support group to possibly pick her brain about who would be a good wound care/ostomy nurse at the teaching hospital I attend. I'm just trying to make as educated of a decision about this as I can, just I feel like I'm married to my bathroom more than my husband. Me being 37 and him 41, we already sleep in separate rooms; both of us have restless legs, and at times, I am up every hour or even more frequently to go to the bathroom. I already take a lot of dissolve-on-the-tongue supplements to make up for what I am not able to absorb through my GI tract. I've been running into the issue of dehydration lately as fluid passes through my GI system so quickly. I'm nervous about my 24-hour urine collection this weekend because it's going to look like my urine output is down, but I'm losing so much fluid through bowel movements. I can't tell you when the last time was that I had a nice, satisfying, well-formed bowel movement.

I guess I would ask you guys, what would you ask your doctor in retrospect before surgery? What are things I should know that the doctor will likely gloss over? What do you know now that you wish you knew before your procedure? I'm pretty much a blank slate, open to hearing anything. I'm a pro at other things in my life, but a free late ostomy newbie, even though I wore an ostomy bag for about 3 months when a G-tube fistula did not start healing up right away like it was supposed to start doing within minutes like my GJ tube did, so I had my fair share of adhesion issues, leaks, etc. With my neph tubes, I already have a shower curtain on my bed, then a blanket in case of any urinary leaks, and have lived with that for 5.5 years already. Pretty much anything seems like it would be better than living in my bathroom with lots of cramping and pain. I have been taking more pain meds than usual because my nerve endings in my bottom region are raw and bleeding and hurting 24/7. Most of the time, I lay down, as putting direct pressure on my bottom hurts even more. I have tried regular pillows and doughnut pillows. I don't want to lose any more weight; my New Year's resolution is to gain weight. 5'8" and 140 pounds is just too thin and bony for my former athletic muscular body.

Sorry for writing a mini-book. As you can tell, I'm far from the run-of-the-mill patient to begin with. If you made it this far, thanks for reading through all of this, and thanks even more if you have any advice, tips, or tricks. :)

Welcome to the site. What an incredible story of survival. Praying that things improve for you, and that you make a careful choice after several expert opinions. God bless

Hi and welcome to the MAO,

I didn't expect to get a colostomy as my tumor was to have been removed without needing it done. I don't know what I would ask the doctor before it happened. I knew when I first met my surgeon that it was possible but didn't give it much thought. Once I was healed and up and about, the biggest thing was to keep a food diary to know what was okay and what wasn't. Nowadays, there are so many wonderful products we can get to sample that I was not aware of until my hubby found this forum. Keeping a change of supplies in every spot I can think of in case is something else I found valuable.

Sorry I'm not much help, but I'm sure others will have more to tell you.

Thanks for your response, mild_mannered_super_hero. I always overthink/analyze everything I do. Needless to say, I've researched my doctors available at the teaching hospital I go to. I feel pretty confident in the new chief of colorectal surgery. She did 10 years at U of Pennsylvania, then 5 years at Duke, and is now the chief at UC Davis. I also have a tendency to ask people around the offices, "If you had a family member going through this, who could you suggest?" and so far my choices have been good. I also do a complete literature review on them and see the types of things that interest them to make sure I have someone on my team who is truly interested in my situation and that I'm not just "another" patient to them.

Thus far at UC Davis, I've been treated pretty well, but I'm also a different case than most, so I'm pretty memorable. Plus, they know I am a fighter and have refused to be hospice 3 times. To look at me, I look healthier than anyone walking down the street and get blood-curdling stares on days when I'm feeling weak and use my disabled placard. Anyway, thank you for your kind words. :)

Thank you for your response, Mrs. A. I guess my question should more so be, what do you know now that you wish you knew before surgery? Which I realize is difficult as you really didn't know you were going to end up with this outcome. I guess I just like to prepare for the worst and then am happy when it's not as bad as I expected. I realize there will be quite a learning curve to things in the beginning. I sometimes tend to overprepare for things. I already carry a change of clothes and my other bags with me, so some extra supplies will not be a big deal. My neighbor, who also has an ostomy, has also told me to always take supplies with me when I end up hospitalized as they might have the particular appliances that my body is used to. I've already done a food journal before and I realize it is important to introduce one food at a time to be able to be sure as to what is giving me trouble, if something does not agree with my system. Anyway, I wish you all the best and thanks for your response. :)

Dear JAS78, wow, you have been through so much in these last 5 plus years...you are a fighter - don't give up, even if you become discouraged with this journey. You will get the answers that you need, sometimes it takes some research and lots of questions as you are doing now. Good job! The first thing I would research is life with an ostomy if that is the route you are traveling. The United Ostomy Association of America has a lovely CD, not too long, which highlights living life with an ostomy. It is very well done and a good start. I read that you will be attending a support group soon - very good. It is important to meet others who are living their living with an ostomy. I did not know anyone with an ostomy in the early days and it was upsetting because I felt alone and isolated. Get connected. You will be able to ask questions about the daily routine to those practicing the routine every day. I would also attend other support groups if you have them in your area. Meeting a variety of people is all good. I attend three different ones and find it very uplifting. I need to run right now, but will post again with some additional information. Take care and am glad that you found our site:) It really helped me while I was going through the transition from UC/illness to ostomy life. Take care - talk to you soon. LH

Hello JAS78. Thank you for joining us  and giving such a heatfelt description of what you have been through.  It always makes me feel a bit gulty to say things like "I enjoyed reading it" but you havde a unique and interesting style of writing that  encourages the reader to wan tto know more and that is what makes any piece of writing 'enjoyable' for me.  Your account also took me back down memory lane to the days when I was suffering with faecal incontinence, heamorroids and the like and was reluctant to accept the long overdue surgery for an ostomy. That is all behind me now (no pun intended) and I've settled into a different life with a stoma. I cannot describe how greatful I am for the opportunity to manage the problems of faecal disposal via the front of my body where I can largely control what goes on rather than have it all out of control in a place where gravity has the upper-hand. It's good to hear that you have found a reliable surgeon and are making contacts with people who know what they are talking about. Before my OP. I felt I had the best advice possible about where to site the stoma and the type of protusion that was preferred by my surgeon along with the reasons for this viewpoint.  I did not know anyone with a stoma at the time so I did not know what questions to ask. I was greatful for the information I was given but in retrospect I would have liked to have known a lot more about the very real dangers of getting hernias after the operation. If I had such information I might not have developed the type of hernia that I have now. Otherwise there was not much that I would have asked over and above what I was actually told at the time.

I hope that everything goes well for you adn look forward to reading some more when you have the time and inclination.  Best wishes Bill  

Hey there Jenn, sorry to hear of all your struggles. I had a couple of months before my colostomy to do my research and also being in the healthcare field helped also. I would research online as much as possible and write down any questions that come to mind. When I first got my cancer diagnosis, knowing that the location would mean a permanent colostomy really bummed me out, but after my research, I was able to go into it with a positive attitude. Two years later, I can say that my attitude has changed much and I have saved a ton on toilet paper! LOL Good luck and feel free to ask any questions, and I will try to answer.

My goodness, Jenn, you have been through the wringer! My heart goes out to you. Wow, what would I have asked before my surgery had I known what I know now? I was within a week of dying due to the incompetence of a "GI Specialist". Following a routine colonoscopy, I became deathly ill. I was losing 5 lbs./week. My communication with my doctor was via phone calls with the nurse. This went on for about 5 weeks until the doctor ordered another colonoscopy. The doctor determined I had an inflammation of the large intestine and prescribed Prednisone (which did no good) and many other treatments (that also did no good). I had gone from 210 lbs. to 145 lbs. I could not get out of bed due to weakness yet I had to since I was going to the bathroom every 20 minutes. Finally, after 3 months, the doctor ordered a C-diff test. Positive. Another 3 months of medication to try to get rid of it left me near death's door. I begged for a referral to a larger institution and waited another 3 weeks without hearing anything (though I called every 3 days). I finally scheduled myself at the Mayo Clinic and got in within a week. They determined the C-diff did so much damage that I had to have an immediate ileostomy to save my life. I am convinced the C-diff was introduced into my system through the colonoscopy due to unclean equipment. I consulted 2 different law firms and both stated I have a strong case but it is nearly impossible to sue a doctor in the state of Wisconsin.

So, getting back to what I would have asked prior to surgery - I really didn't have time. It was do or die. What I can tell you is I wish my stoma was located a bit lower since it is exactly at my belt line. This causes problems with pants. The rectum removal part of surgery took 1 year to fully heal. I had to sit on a cushion during the healing process. I have had 1 subsequent surgery since 8 inches of small intestine pushed out of the hernia around the stoma and got kinked. I would HIGHLY recommend joining a support group in your area. There is none where I live.

My best to you, Jenn.

My! What a story!! I had trouble after radiation and chemo for rectal (anus) cancer. Afterwards, I had trouble passing stools. My rectum wouldn't expand to release the stool. I had the worst pain and had to do enemas all the time, plus always using Lidocaine Gel for a raw, red, swollen rectum from straining. I ended up going to the ER weekly to get relief. FINALLY, I got a COLOSTOMY!! That's the BEST thing I could have done!!! With a very supportive husband, I am finally back to having a normal life, instead of the toilet ruling my life!! GOOD LUCK TO YOU!!!!

Hi Jenn, people said I was brave and did so well following my diagnosis and subsequent treatment and surgery, I think not!

After reading your story I think you are an inspiration, I have moaned and wallowed in pools of self-pity, shame on me.

Worse still, I have no useful advice for you, I'm sorry. I so much hope your situation improves and therefore your quality of life, you are clearly a remarkable lady.

Doug

Jas - With all that you have fought through so far, ostomy surgery should be a breeze for you! I've had my ileo for 40 years now. Surgery was at the ripe old age of 12. I was blessed to have had a resident doing his rounds in pediatric at that time who had a wife with an ileostomy. I believe that I accepted the surgery because kids are resilient and I had been so sick for years. The night before the surgery, Dr. Peck came in to visit and drew on my belly where he was going to place the stoma. It was right on my waistline. Being the 70's those big, fat belts were all the fashion. That placement just wasn't going to work for me. I voiced my concern the morning of surgery. He placed it a couple inches lower. My recovery was pretty quick also. I was home with a tutorial for 2 months and then back to school! My incision had to heal on its own due to the high level of steroids I was on at the time. Other than the occasional blockage because I ate something that I shouldn't have, I've done very well with it. Best of luck to you!!

Hi everyone, thanks for all of your responses and encouragement. This year has been quite bumpy for me. However, I met with the new colorectal surgeon at UC Davis, and I am glad I waited to see her. She had thoroughly studied my vast health history, and within minutes of talking to me, she said that she would like me to try 3 different medications before I try to slow down my GI motility before we move forward with an ostomy. The first medication she put me on is cholestyramine, which is normally used as a binding agent to control high cholesterol by increasing the removal of bile acids from the body. As the body loses bile acids, it replaces them by converting cholesterol from the blood to bile acids. This causes the level of cholesterol to decrease in my system and is a lifesaver by slowing down my motility. It had been working amazingly well until I tripped and fell and landed on my left patella, fracturing it in June and tearing my patellar ligament. Needless to say, with my immune system weak from my previous cancer history and current dialysis status, and my blood flow to my legs poor, so after the initial surgery, my wound refused to stay closed up. My body has been trying to reject some of the internal stitches (my patellar ligament is stitched to the bigger piece of my patella with holes drilled in it with Kevlar), and I have had surgery in June, July, and August. During that time, I have been on many antibiotics to try and keep infection at bay. It worked for that, but has really done a number on my GI tract, even with taking a good probiotic and eating Greek yogurt smoothies with pasteurized egg whites in it to try and add to my protein intake to help with healing (which it finally is doing since a plastic surgeon cut out the necrotic tissue and moved skin around to get better blood flow to my knee). Needless to say, before my first surgery, I was taking the colostyrene 3-4 times a day, and was having BM's 2-3 times a day. Now I am back to taking the colostyrene 4 times a day and am taking the max dosage of liquid imodium. It absorbs better as I'm having probably 5-10 BM's per day and end up in the bathroom quite soon after eating. It's not as bad as things were before the colostyrene, and I'm hoping to allow my system to regulate a bit more before seeing my colon surgeon again to find out what the second and third drugs are that she wants to try before an ostomy. It's just frustrating as the antibiotics seemed to throw a wrench in what had been working so well for me for 5 months. Needless to say, my journey continues. Hopefully, no more surgery and antibiotics for quite a while. I've only been off antibiotics for 2 weeks and have been tested for C. diff multiple times over the summer. I wish all the best for all of you that have posted in this thread. I actually met with the ostomy nurse in February just to become more educated in case that is a necessary path in the future. I already had a lot more knowledge already as I was a bag lady for 3 months when I had gastric juices coming out of me for 3 months when I had a G tube (for feeding and decompression) removed, and the wound should have healed up in 48 hours as my previous GJ tube had done perfectly.

Hi Jenn, glad to hear from you. Thanks for checking in. I pop on and off and sometimes miss post updates. Sounds like you had a very hectic summer filled with lots of medical stuff. Hope the GI doc is able to determine why you are having so many BMs during the day again. Like you said, it may be because of the change in medicine, extra antibiotics (which always mess up the GI tract) and your fall/fx. How is the knee feeling now after the plastic surgery? Are you feeling better? Wounds of any sort are troublesome and better when they heal and go away. Take care and please keep us posted on how you are doing. Happy fall to you as today is the first day....goodbye summer of 2016. Sincerely, LadyHope