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Losing my colon, many questions

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Posted 6/28/2015 4:15 PM (GMT 0)
I'm 59 year old woman. I have had ulcerative colitis for over 14 years. No major flares for over 6 years.

My routine colonoscopy found the highest dysplasia cell's located through out my entire colon. Two large polyps removed near my rectum (20mm) pre-cancerous. My entire colon is inflamed. Blood test was negative for inflammation. The inflammation is contained in the lining of my colon.

The recommendation is to remove entire colon as soon as possible. I haven't been able to speak with a surgeon yet and it looks like 3 weeks before I can be worked in. I would like to get some advice from others who have had the surgery and willing to share their experience with me. I know from 14 years of fighting UC everyone's experience is different.

Post Edited (cpc56) : 6/28/2015 10:59:09 AM (GMT-6)

Posted 6/28/2015 5:31 PM (GMT 0)
I don't have UC but I have had a permanent ileostomy since 2013, do you have any specific questions? I found it very easy to get the hang of emptying and changing bags. Stoma nurses help at first but I picked it up very easily. I have occasional problems, but I am so glad I have a stoma now and I am very happy it's permanent!
Posted 6/28/2015 5:51 PM (GMT 0)
Thank you Anna,

Is there anything going into this surgery that you wish you had known? Was a JPouch an option for you?
Posted 6/28/2015 6:56 PM (GMT 0)
A JPouch wasn't an option, I had a lot of rectal problems and also problems with the sphincter muscles, so it needed to be a stoma for me.

The main thing I wish I'd known more about is how to order stoma supplies. My stoma nurses talked me through it, but when I came to ordering online, I couldn't work out what any of the descriptions of different bags meant. But what suppliers you use and the ordering process depends where you live - I'm in the UK so only know the system here, if that's where you are? It's also useful to know that you're entitled to free prescriptions and medical waste collection services if you live in the UK, but other countries must have similar services.

I also had a lot of trouble with fibre at first, and wish I'd known how important it is to avoid foods that cause blockages. Though that seems to vary a lot from person to person.

More generally, always ask your stoma nurses if you have a problem because there's usually a solution.

Have you had major surgery before? The most important things I've learned regarding surgery are to make sure to get meds to help you sleep because sleep is vital when recovering. But avoid opiate painkillers when possible because the withdrawal can be worse than the pain.
Posted 6/28/2015 7:08 PM (GMT 0)
Anna,

I haven't met with the surgeon yet, she has been traveling so they can't fit me for 3 weeks. I live in the state of Washington, USA.

I do not tolerate narcotics, they make me violently ill so I have some concerns about pain management.
Posted 6/28/2015 7:27 PM (GMT 0)
Hi
Welcome. My signature tells my daughters story. Sounds like your colon needs to go. My uncle also had a colectomy, so I was prepared. My daughters age and relative health made the J pouch decision a worthy one, but if it were me( at around your age), I'd do the one surgery and be done. The pain is real, and I hope you can try some sort of IV med to dampen it for a few days, Tylenol won't cut it. Have an advocate during your stay. Are you interviewing surgeons or are there no options? Make sure your surgeon is a colo- rectal specialist who has done lots, and do listen to the stoma nurses- they are awesome. Come back with specific questions, or just keep reading. Search your topic in the top bar, and looksfor relevant dates. You will be ok, get that diseased organ out if it could risk your life.
Posted 6/28/2015 7:28 PM (GMT 0)
I had my stoma surgery with no narcotics. It isn't fun but it's bearable. Some people find paracetamol (acetaminophen) helps. I use amytriptyline to help me sleep, it helps with some types of pain, but mainly it allowed me to sleep even though I wasn't comfortable. I wouldn't worry too much about having it with no narcotics. But tell your concerns to your surgeon, or a nurse, before you go into surgery and they can help you decide what's best. If the pain gets too much, always tell a nurse and see if they can do anything to help. I even had diazepam to help with pain once, there are many options.
Posted 6/28/2015 8:35 PM (GMT 0)
Thank you both for sharing your experience and advice. I have managed the UC for such a long time, no hospitalization. I needed iron infusions 2 or 3 times a year and over the last 7 years I haven't had a real flare. I do make 10 to 15 trips to the bathroom a day and usually 1 or 2 at night. Fatigue is a constant companion as well as anxiety. Constipation has never been an issue. The prospect of getting my energy and life back is appealing but I worry about making life style changes. I can and will make the necessary changes I just need to wrap my brain around everything that is happening.
Posted 6/28/2015 8:43 PM (GMT 0)
Hey, are you sure it's all narcotics? I found morphine made me ill but I could tolerate fentanyl, there's also like IV, oral, and even patches for it.
Posted 6/28/2015 8:51 PM (GMT 0)
I can do fentanyl but I don't believe I have ever been given it as a post pain option. The go to narcotics make me so sick it a choice between, pain and violently throwing up or pain.
Posted 6/28/2015 8:57 PM (GMT 0)
Tramadol is not a narcotic but it's a much stronger than Tylenol
It won't cause constipation too which is nice
Posted 6/28/2015 9:04 PM (GMT 0)
Dikid,

Thank you very good idea. I have used sleep as a pain coping management for years.
Posted 6/28/2015 10:39 PM (GMT 0)
If you have a surgery pre op you can inquire about getting an epidural it's a real god send the first few days and since it's basically a nerve block they only have to use a very small amount of pain killer to get the job done.
Posted 6/28/2015 10:47 PM (GMT 0)
I knew tis was the place to get answers. Thank you
Posted 6/28/2015 11:52 PM (GMT 0)
You make 10-15 trips to the bathroom a day? And you don't think you're in a flare? You sound like me...I was never truly out of a flare.
Wait until you see how much free time you have without spending so much time in the bathroom!!
I think you may also wish you had this done sooner.

I LOVE LOVE LOVE my new life and the freedom the surgery gave me. For me, the adjustment came pretty quickly and hopefully, it will for you too.

You definitely came to the right place to get your questions answered. Ask away!!
Posted 6/29/2015 12:02 AM (GMT 0)
Tramadol makes me sick along with narcotics :( I usually take zofran or something to try to keep it to a minimum. Being nauseous is miserable. 10-15 a day is a chore for sure! This may really be liberating for you.
Posted 6/29/2015 2:19 AM (GMT 0)
10 to 15 was manageable, I had time to get to a bath room as long as I didn't ignore the first signal. Sometimes I was a little premature. A flare would be 25 to 50 trips, my husband counted because I was always being asked and I could never remember how many times. A flare also involved filling the toilet with blood and lots of pain. The last 6 years have been pretty uneventful so I was dumb founded when I was diagnosed with pre cancer and total inflammation of the colon.

My gastro dr tells me that I will no longer have UC, no more infusions, no more medication for the UC and most important no more cancer. But I keep seeing posts by people who have had the surgery and are still having issues. Still pain, still UC still infusions and still weak. I know I can't compare my own colon to everyone but I would like to see a greater consensus.

I currently work a 13 to 14 hour day door to door, my commute is 2 hours with no bathroom. I'm on call 24 hours for 7 days every other week. My job is stressful by it's definition. I'm also type 2 diabetic due to the UC over time. I have fatigue and headaches but the headaches were caused by the UC medication.
I'm pretty strong, not as strong as I used to be but I have fought to try to live a normal life.

Patients with UC can have Ileo-anal Pouch if they have certain conditions maining the condition of the rectum. The J Pouch also seems to be popular but can have problems with constipation cause pouchitis and another thing that sounds equally unpleasant. I'm not sure what is the determining factor for who gets a pouch and who gets a stoma . An lastly if all else fails ileostomy which can have bad skin around the bag collar, leaks and requires carrying supplies at all times. It's a lot to comprehend and I feel like I should have some idea about what's best for me and my life style. I guess I should be grateful that the cancer was caught early and I will be cured.

Did you all feel that you were given enough information prior to the surgery? Did you feel like your surgeon listened to you?
Posted 6/29/2015 8:50 AM (GMT 0)
You poor thing! I also think an ileostomy may be great for you. I empty my ileostomy two times a day usually, rarely have leaks, have had no skin problems. It takes me two minutes to change the bag. I always have plenty of warning if the bag needs emptying, even if I have a stomach upset, I have a long window (hours) before the bag gets very full. Some people do have a lot more issues than me, but I think it is very probable that you will have far fewer bathroom visits with an ileostomy.

I had a great surgeon - two great surgeons actually, because I still have problems, I don't have IBD, I have another illness still affecting my small intestine, so I've needed further surgery due to that. My last surgery was an emergency, and although it was not to do with my stoma, my one request to my surgeon was to keep my ileostomy! I do not want to go back to all those hours in pain, in the bathroom.

Post Edited (AnnaIvy) : 6/29/2015 2:55:06 AM (GMT-6)

Posted 6/29/2015 3:20 PM (GMT 0)
I'm definitely grateful I had surgery! It sounds like it is the right thing for you to do. I have a jpouch and love it! Not sure if you are able to have one or not but even if you can't I think that the ostomy would be great for you! I had a temporary one for two months until I got my reversal. It is definitely a big adjustment and a hard hurdle to get over. I never really got used to it since I only had it for a couple months. But from what I heard, people with permanent ostomys tend to really love them. By the time I got adjusted it was time for the reversal!

I feel as if I was given enough information beforehand. Especially with this site to help. People here told me pretty much exactly what to expect and my surgeon made sure I was ready and comfortable. My surgeon definitely listened to me. He gave me his email and everytime I had a question I would send him a message and he always got back to me within a day. He answered all my questions and made me feel at ease. He is amazing! Make sure you choose a great surgeon with lots of experience cause that can make all the difference in your experience. If having the surgery will get rid of the UC and cancer, it sounds like something you really should do. I only had UC for 2 years before surgery. I couldn't imagine having it for that long! I think it was worth it. I go to the bathroom about 6-8 times a day depending on what I eat and I am off all my medication! Happy with my decision and hope you will be with yours also whether you have an ostomy or a jpouch! Best of luck and don't hesitate to ask any questions that you have!(:
Posted 6/29/2015 3:25 PM (GMT 0)
I had a similar history to yours but no cancer (although my surgeon told me it was only a matter of time when he removed my colon). We are close to the same age. I had UC for over 10 years (started when I quit smoking) and would flare about every 6 months...go on prednisone taper then back to maintenance drugs. However each year my "non" flare time had increased frequency. The last flare started in 11/13 and had to to go all the way to 60 mg pred to get it under control. However each time I tapered off the symptoms would be back within days. I chose J-Pouch surgery and couldn't be happier. I won't sugar coat the loop ileostomy...I hated it (very liquid output...emptied more often than my pouch)!!! And the first few months adjusting to the J-Pouch weren't awesome either. However at 5 months post take-down I am back to doing everything I did before plus much more than I was able to do for the year before my surgery! I routinely (3-4 x per week) play 18 holes of golf and stop just at the turn (just like pre-UC days). I also teach Zumba Gold & Aqua Zumba twice a week (Aqua in Florida heat & as instructor not in the pool!). I do find certain foods cause issues but it's trial and error for the first year.

I do not tolerate narcotics well either. For Step 1 I had the morphine pump for may 12 hours. They gave me Percoset after that (which made me nauseous) so I basically took just Tylenol by the 2nd day. For Takedown I also had the pump for maybe 12 hours and then had Dilaudid (which did not make me sick). I took that for maybe a day and then once again just Tylenol. Everyone's pain tolerance is different...I just don't like the way I feel on narcotics!

I would say that right now I go about 6-8 times per day and once or twice at night (but since menopause I don't think I've slept through the night anyway :)). However, I drink so much water that I easily pee that many times and for me emptying the pouch (which my friends nicknamed Jordan) takes about the same amount of time. No pain or discomfort (I do still routinely use Calmoseptine or BagBalm to avoid butt burn & I bought a sprayer for the toilet which I love - Home Depot $35...easy to install).

Good luck in whatever you choose.

Vicki
Posted 6/29/2015 3:38 PM (GMT 0)
I love my surgeon, he listened to me, and still does! I email him every now and then and we keep in touch.

I have no more pain, no more UC issues, no more medications...except for blood pressure and some vitamins. I was weak after the surgery...but now I have tons of energy. No more anxiety worrying where a bathroom is or if I'll make it in time. I'm able to make commitments and keep them! No more colonoscopies or the fear that I was going to get colon cancer. I eat everything!

I don't know how much information you really need prior to surgery...but anything you need to know, you'll learn here. And some things, you just need to learn as you go along.

Search for a local ostomy support group and go. I went to one meeting before my surgery. And I've gone to every meeting since. It's nice walking into a room with others just like you.

Ask us any questions you have!
Posted 6/29/2015 8:35 PM (GMT 0)
Hey cpc, I'm not taking your concerns about pain meds and general ostomy surgery lightly but it seems like three weeks is a long time to wait with your symptoms. There's plenty of time to learn about the surgery prep and what to expect afterwards. We wouldn't want to have emergency surgery because the surgeon might not be proficient at that procedure. We want the correct size stroma in the correct location so we can get on with our lives comfortably. I just don't think you should wait 3 weeks.
Respectfully,
Michael A
Posted 7/5/2015 6:53 AM (GMT 0)
Update, I was worked into the surgeons schedule on the 1st of July. She seems to be very capable. Her explanation of my choices was pretty dismal though. Not one option had any positive result. If I choose anything other than the end ileostomy she said I will get cancer later and end up with the bag anyway. So it really boils down to how many surgeries I'm will to endure before I get a bag. She did clarify that I'm pre cancer no actual cancer was found. After explaining everything that will probably go wrong she did say it was up to me though.
I had a contrast examination of my small intestine on the 3rd of July and it is perfectly healthy not affected by the UC and as long as everyone else's. What ever that all means.
I have not been in pain for 8 years, my normal work day is 13 to 14 hours door to door. I was also on call 24 hours a day 7 to 14 days at a time. My energy has been building over the years to the point that I have felt like I was getting my life back. I'm diabetic and with the medication I took for UC both have diarrhea as a side affect. I have never had an issue with constipation because I took fiber everyday and drink 100 ounces of water. I have fatigue but that is also part of taking diabetic medication as well as the UC. I have been able to travel abroad, manage my own luggage and with a nap everyday pretty much go any where I want.
Every option for removing my colon is fraught with issues and complications. Leaks, infections, skin damage, surgeries to remove blockages, ulcers around the stoma, bursting bags and I'm sure there are issues I haven't read about. My diet has been healthy my whole life and I'm considered a gourmet cook. I read about people who drank Ensure all day because of the fear of constipation and ending up in the hospital. Some people never get their strength back. Travel sounds like it is under certain circumstances and short distances. None of this sounds better.

I was told I would have a new better life but I don't see it. I struggled for so many years to get past the flares, bleeding and weakness , the prospect of going back to being weak and adding problems that I've never had is beyond comprehension. I meet with a stoma nurse on Monday and the surgeon afterward but I'm seriously thinking about finding out how much time I would have if I do nothing. I know I'm depressed at the moment but I have no good choices and I have always felt that a human being has the right to decide when enough is enough.
Posted 7/5/2015 10:44 AM (GMT 0)
I can only tell you that I love my permanent ileostomy. Just because problems are possible does not mean you will get all of them. My stoma doesn't stop me doing anything, I don't worry about leaks - I've had a few, but it really only has been a few and those were preventable, and I've had my stoma since 2013. I had to stick to a specific diet for a while, but I don't even have to do that anymore. My skin is perfect.

I have had a lot of digestive problems since getting a stoma, but they've all been about my other health condiditions, not the stoma itself, and in all honesty, I don't think I could have got through them without a stoma. Diarrhoea is so much easier to manage with an ileostomy, especially when I was on bedrest in hospital! Much easier to have to empty your stoma bag than have a normal bowel movement!

This is my experience, I can't say if yours will be the same or whether you will mind having a stoma, but having had one I find it hard to see why some people believe life with a stoma will be unbearable. I have a lot of medical issues that make my life miserable, but my stoma is not one of them. I don't consider it a negative at all.

That said, I do realise this is a very personal decision, and the right choice for you may not be the same as mine. If there are other options available, e.g. beginning with just the removal of your colon but with no stoma at first, that may be a better fit for you psychologically.

But I really hope you don't decide cancer is preferable to losing your colon. I'm so sorry you're feeling that way. I think if you can just get through the surgery, then you can deal with problems as they come and concentrate on making life with no colon as good as it can be for you, you may find it's ok. I know it feels like you have no good options, but some really are not as bad as they may seem to you right now.

Post Edited (AnnaIvy) : 7/5/2015 4:49:57 AM (GMT-6)

Posted 7/5/2015 11:23 AM (GMT 0)
Wow cpc56....I think you should see another surgeon. One who makes you feel more confident.

I LOVE (really!!) my permanent ileostomy. I've never had a leak, infection, skin damage, a blockage, ulcers around the stoma or a bursting bag. But even if I did, these are all manageable things....way better than cancer, in my opinion.
I eat everything I want and travel wherever I want...even out of the country. I travel long distances on planes, trains and automobiles. 😃
As for energy levels...my surgeon told my husband to watch out, that after my recovery I'd be running circles around him. He was right!

I'm sorry you came away from your appointment feeling so negative. I hope you find a way to turn that around.
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