I`m single age 62 and retired from my working career of 40 years. Nine years ago I was diagnosed with UC. My father also had UC for many years before passing away at age 66.
I was diagnosed 9 years ago with UC, now classified as severe chronic left sided UC. I`ve been through many of the medications available to treat UC including NSAIDs, ASAs, corticosteroids, immunosuppressants, and biologics. I`ve had short periods of symptom free remission albeit nothing long term. The longest period of remission was approximately 2 years while on Humira. Medications work for awhile then become ineffective when the flares return. I`ve tried the SCD diet, probiotics, and other methods to manage my UC without long term success.
At this time I am running out of options. My recent flex-sig exam shows a worsening condition and erosion of a larger area in the sigmoid colon. My GI is suggesting either participation in a clinical trial at the Mayo Clinic or surgery. The clinical trial would be 1 year with a phase 2 experimental drug. The drug would not be available upon completion of the trial until the drug reaches phase 4 and approval by the FDA. Obviously there are no guarantees with the clinical trial and there are risks and commitments that would have to be accepted.
I have consulted with a colorectal surgeon recently to discuss my surgical options. The recommended surgical procedure in my situation would be a total colon removal (protocolectomy) with an ileostomy. It is my understanding that it would involve 3 surgeries.
So the time is rapidly approaching to make a decision, the clinical trial or surgery. I feel that surgery is inevitable and possibly the logical choice. I do have concerns and anxiety with undergoing irreversible life changing surgery as anybody would. It would be helpful to know what life after surgery would be like and living with an ileostomy. Also the recovery time and difficulties after surgery.
I would appreciate any thoughts or insights that other people with UC might have concerning these topics and issues. Especially people who have undergone surgery.
Thank you so much.
Medications David Knows About:
Medications used over the past 9 years.
Mesalamine, Rowasa, Asacol, Azathrioprine, Methotrexate, Prednisone, Hydrocortisone Enemas, Remicade, Humira, Entyvio. Currently prescribed supplements; Folic Acid, Potassium.
submitted in the colitis venting area
I live in Minnesota and stay active, enjoy sports, bicycling, motorcycling and keep busy with woodworking and home improvement projects. I have many interests and enjoy getting together with friends exploring new places and things.
I had emergency surgery three days after I was (finally correctly) diagnosed with uc. It was that or death. So have had an ileostomy for 40 years now.
Things happen, life goes on. I still consider it a miracle. In a way, I had it easy, for I really didn’t have to make much of a decision.
Someone told me, I have forgotten who, but it must have been the surgeon as I was being prepared for surgery:
“You will have it. You will live with it. You will rise above it.”
I feel I have.
Thank you for your response and encouragement, those are good words to live by.
Hi David. Try antibiotic treatment. Rifaxamin 1,650 mg per day and Metranidazole 500 mg per day. Read on treatment by dr Borody. He treats with antibiotics till remission and proceeds with fecal transplant. Good luck!!!!
I was in the same boat as you though I really didn’t have a choice regarding surgery in the end. I can’t tell you whether or not to have the op but I can advise on a few of the questions you pose….
I had the 3 stage surgery and have the J pouch now (1 year with J pouch). Stage one they removed my colon and put me on the bag. Then they wait for to you heal and dive back in to create the J pouch. At this time they removed my rectum also. Then I went back again after 6 months or so and they reconnect you and off comes the bag.
I wasn’t too concerned with the pain. I really expected a lot more that I felt, so don’t stress on that. I spent only one night in the hospital after getting reconnected.
The J pouch started off good for me and it was great to lose the bag. However, I have to now accept that it isn’t perfect. It certainly better than having colitis but I do experience a few issues. The major problem I have is that I’m tired from having to get up in the night to go to the toilet. It is relentless. The longest sleep I’ve had has been 4 hours. I have faecal incontinence in the night. If I don’t wake up I poop myself. Then I have to have a shower and clean myself up etc. Then I do it again…….I can’t do a regular 9 to 5 job because of this. I do some stuff from home as I can instead.
I would probably go to the toilet half a dozen times, or more, during the day. Sometimes there is urgency and I can get caught short. I wear sanitary pads 24/7 to help with this and carry a bag of kit to help me out.
I also suffer from ButtBurn on a regular basis. This is wicked! This means for me that I have to clean myself in the shower after pooping as wiping aggravates the problem. I’m thinking I need to get a bidet. I spend a lot of time at home with the cat. The cat understands. I’m getting much better now at managing the situation so I hope to see a reduction in this pain in the arse. I pass pretty watery poop. It can be difficult to hold this in and the odd bit can leak out. The acid burns your skin. When you wash it feels like lemon juice squeezed on paper cuts with sunburn.
I also am pretty much dehydrated all the time. This causes me to wake up also with terrible thirst. I drink electrolyte replacement stuff constantly. However, if I drink too much I get watery poop and have to go to the toilet all the time.
I’m telling you this not to moan about it but to help you make an informed decision. I see you are 62. If you are looking to retire then these issues I have wouldn’t be so interfering with your life. I expect these issues to get better with time (surgeon says give it 2 years) so I just get on with my life as best I can in the meantime.
It is great to be off the nasty meds e.g. Prednisone, Azathioprine and Methotrexate. I was stubborn when I had colitis and clung onto my colon for dear life. I’m now glad I had the operation and feel thankful every day. My colon was totally rooted and it would have killed me (last colonoscopy they couldn’t find a single piece of it that wasn’t wrecked). I believe had I continued being stubborn I would have karked it. I was losing SO much blood. The colitis could also have turned to cancer. The theory was that it if did turn colonoscopy might not pick it up as it would be “hidden” under all the other tumors, inflammation etc.
I understand that approx 10% of J Pouchers experience these sorts of things. So the chances are pretty good you won’t. Some people opt to have the J Pouch reversed and go back on the bag. This reversal is permanent. There is no going back. I’m hoping the issues resolve and I don’t have to go back on the bag.
I have an incision hernia. Happened just the other day. My intestines are bulging out just like where the stoma bag was. My GP has referred me back to my surgeon. Apparently they just cut you open, stuff it back in, and slap a bit of mesh over it. Sorted.
Anyway, I think I’m an exception to rule. Most people are sweet as after the operation. I hope it all goes well for you and the info I provide helps you to make an informed decision.
Glad to hear an update from you…I think it was Blake or someone from ago that had some solutions for some of your probs/issues.
Healthy thoughts, Shelly
Thanks for your response and all the great information. It will definitely help me make a more informed decision. Sorry to hear about all of the difficulties that you`ve gone through since having the 3 stage surgery and J-Pouch. It sounds like you`ve had quite a battle so far and let`s hope that your issues will get better soon. It must be nice to be off off all the nasty meds as they are so damaging to your body and overall health. When I met with a colon/rectal surgeon last year he told me that the J-Pouch had a success rate of approx. 35-40%. He said that many people with the J-Pouch have eventually gone on to have total colon removal surgery and now live with an external pouch. The surgeon thought that this would be the best choice for me. Unfortunately there is no easy solution with this disease.
Take care Peter and stay healthy.
I am so glad that you posted your questions.
I too have met with a surgeon.
I have tried many, many meds (horrible side effects), I have not tried FMT, nor the antibiotics. I am still on multiple meds and trying to avoid surgery.
I hope more people post because it is important to learn of others experience with surgery.
I wish you well, and I hope you continue to post.
You are right about the meds, the side affects are horrible. I`m like you and trying to avoid surgery as long as possible. This website has been very beneficial and I`ve learned a lot from reading other people`s posts. Hopefully we can help others as well by sharing our experience.
I wish you well also and look forward to reading more of your posts.
Hello, David —
I’m now 64 years old and also in your shoes. L side Procto-sigmoiditis. I was diagnosed two years ago, but was having symptoms much longer, in fact, most of my life. It wasn’t until the flare progressed to excessive bleeding that I was finally diagnosed. I’ve been on all the meds you have, but I’ve chosen not to go on biologics. As you’ve experienced, I’ve noticed that after a couple of years they are ineffective, and at my age I’m thinking I don’t want to put off the inevitable. I’ve been trying to wrap my head around it (I’ll just get a bag and not do a J-pouch), and have been talking with all my doctors. So far they are very supportive. I see my GI doc on Nov 24th, and I’ll see what she says. I’m not naive. and fully understand that this has it’s own set of issues. I have a friend who notes that this will change my life, but my life is changed now! Frankly, I’m tired. Tired of seeing blood every time I sit on the toilet, tired of the pain when my bowel cramps (sometimes for hours), tired of taking all the meds that don’t really seem to be doing much good. Tired of seeing the negative effects on my liver on my blood tests, and worried about the increased chances of cancer. I still have research to do, but there are two members in my CCFA support group that have gone through this, and they’ve been a great resource. If I were younger, I might try to wait this out, but I think I’m ready now to just move on. Please let us know how it goes with you. Thanks….SUSAN
Your experience and situation with this disease seems to be much like mine. The colon/rectal surgeon that I met with last year recommended a total colon removal with an ostomy and external pouch. I`ve read many favorable comments from people who have had this surgery which is encouraging. I have a friend who`s father had a colostomy and external pouch at age 50 and lived to be 91. I`m like you and tired of the constant flares with severe cramping, blood, urgency, loss of control, fatigue, and all the meds with negative side affects. Also the risk of colon cancer which I understand the risks increase after 10 years of being diagnosed with UC. I think I`m getting ready to go ahead and have my colon taken out sometime soon but as you say, still trying to wrap my head around the inevitable. I`m sure it will be a big life adjustment living with an ostomy but I have to believe that the benefits will outweigh the negatives.
Best wishes on the visit with your GI doc on Nov. 24th. I`ll be interested to know how things go with you also and I`ll continue to post with and update on my situation.
Thanks for your comments and best of luck.
There are lots of surgery stories on here to read and those of us still treating naturally and some with meds. Read lots and good luck.
I was diagnosed with pancolitis 4 years ago aged 22. I was hospitalised in 2012 for 11 days and long story short, i couldn’t wean off the prednisone as another flare would start. I saw my surgeon in Dec 2012 and decided I couldn’t live on meds anymore and organised my subtotal colectomy for 1st may 2013. The original plan was to have a 3 stage jpouch but after i’d had my first op I changed my mind. My surgeon advised me that 50% of jpouch patients gets on fine with it, 40% experience problems much like what Peter has explained. The remaining 10% have it so bad they have to go back to an illeostomy permanently. I remember sitting in my surgeon’s office and thinking that if there is a 50% chance all will be fine and a 50% chance I’ll just end up with a different form of bowel problems, I quite honestly don’t want to roll those dice and take that risk. I got on fine with my ileostomy from day one and was living life like my pre UC days. I told my surgeon my decision and he said “If i was in the same position as you in regards to getting on fine with the stoma, and living life normally I wouldn’t take the risk of a jpouch either.
1 year after my first op I had my proctectomy which is to have the remaining 15cm of rectum removed (this is the bit they leave behind after step 1 of 3 of a jpouch plan) as I was having chronic bleeding from it and needed it out.
Long story short, 6 months ago I needed another op to remove 2cm of anal canal (this is usually removed in a proctectomy but newer techniques are leaving the anus behind to prevent a massive wound) and I was just unlucky to be bleeding from there aswel. My surgeon said that he is so glad I didn’t go down the route of the jpouch as colitis affected so much of that area, I would never have lived a normal life with a jpouch.
I’m 27 now and am getting married next year and have no regrets whatsoever in choosing to have my bag for life. It doesn’t stop me doing anything and the only thing I miss is being able to fart!
All the best and if you do go down the surgical route let me know as i’m full of tips :)
Thanks for posting your experience with pan colitis and the details of your surgery. Your story is very inspiring and I think I would also lean toward the ileostomy as well for the reasons that your surgeon advised. It sounds like you`ve gone through a lot to finally get to the point where you are well and as ease with the ileostomy with no regrets. I hope to be at that point one day, hopefully soon. Like you I have become steroid dependent and haven`t been able to ween off the Prednisone without the start of another flare. I`m not on Prednisone now but I am flaring everyday and have to decide soon on the next treatment plan or most likely surgery.
Thanks again for the insights and stay healthy.
Hi, David –
I’m doing lots of research on the pros and cons of surgery and found this blog post:
I found this thru the CCFA Community website. This young man went on to have a Jpouch, but he details his surgery and recovery while having his temporary stoma. It’s the most comprehensive I’ve seen explaining what exactly his experience was like, day by day.
I’ve not had any biologics, but yesterday watched several videos by Dr Christina Ha, from UCLA. I know many people have success with biologicss, but they scare the crap out of me. And at my age, I’m even more convinced that I don’t want the risks. Hope you find this blog post useful. I certainly did. …..SUSAN
Hello Susan (and David)
There is a series of almost 50 videos on YouTube:
by a guy in Chicago who had the 3 surgeries for a j pouch in 2012-2013.
He is very open about discussing everything. You share with him his first view of his stoma, learning how to change an appliance while in the hospital, changing an appliance at home alone, and then his next two surgeries. It is really a very informative and powerful series. (You might want to start with video 18 where he discusses what led up to the surgeries after years of uc.)
Thanks, K. I’ll check them out!….SUSAN
Thank you SO much for the referral to the videos by ucandpsc. This young man did an outstanding job of documenting his journey. I’ve watched about 2/3rds of all the videos, even tho I’m would not pursue a J-pouch. I’ve seen four other doctors so far this month, and will see my GI doc on Tuesday this week. I’m ready to talk to her about surgery. ….SUSAN
My son 21yrs old was diagnosed with pan colitis in Feb 2015. He started bleeding rectally in Dec. 2014. He got sick really fast, lost 40lbs unable to eat. He was basically in the bathroom 24/7. Medication did not help. While he was in the hospital getting hydrated (3/23/15) his colon ruptured and needed emergency surgery to remove 3/4 of his colon. He did ok for awhile then he developed 2 small bowel blockages he was hospitalized for a week each time. He now has arthritis of all of his joints they want to start him on Humira which I really don’t want. I would like for him to have the J pouch surgery but reading all of these problems people have I don’t know if I should push the issue he has been through so much already.
Ultimately it’s your sons choice how his bowels work.
If he gets on fine with a stoma then is it worth the risk?
It wasn’t for me and it may not be for your son
We are in the hospital now with the 3rd blockage and the surgeon seems to think this us going to be a chronic problem. He would rather do surgery now than later.
I am in the same boat and I have a planned surgery in next 48 hrs. I gone thru everything on this planet except the FMT and I am not very interested in “try” route anymore and keep loosing valuable time from the life
I have a surgery planned for 24th Nov and It is initially a J-pouch In 2 stages. but after reading all the post and possible complications with the pouch imflammation, I had sent a note to my dr to see if he can just remove the colon and rectum and NOT touch the small interstine and just put a external bag and be done with it. He said he will do as laprascopic. Hopefully he will accept the permanent bag option and I will be done with surgery on Tuesday (24th nov 2015). I also asked him if he can just remove the left sided colon and keep the other portion and he is not willing to do.
He studied in john Hopkins, went to duke for surgery and Cleveland clinic for colon surgery and he seems to be a very good surgeon ( recommended by my GI in Atlanta area).
Did anyone got “partial” colon and rectum removed and still able to use the other colon to avoid dehydration issues ?
As UC affects the colon, not removing all of it is a recipe for disaster. After my 2nd op when my rectum was removed, my surgeon accidently left less than 1cm of rectal mucosa behind which caused constant bleeding so i then had to have another op to get that removed. UC is an autoimmune disorder and unless the entire colon is removed it will just “move” to the bit left behind. Incidentally now I have no colon whatsoever, I still get inflammation caused by UC in the form of a skin condition on my hands.
I’ve had my ileostomy 2.5 years and sure, every now and again i’ll forget to drink enough and have orange urine and get a bit of a headache, but a few glasses or water sorts it out.
All the best for your op and keep us posted
Thank you Tom. I had my final /final meeting with my GI and he said very clearly that only removing the entire colon and rectum is the only option for the surgery. J-Pouch or perm bag is more of a personal choice and not a medical advantage/disadvantage.
I am done with my colon prep and all ready for the surgery tomorrow. Hopefully my surgeon will guide me before my IV starts. Only thing i am interested is – get rid of colitis and minimize the pouchitis and okay to deal with the bag lifelong
Hope your surgery went well with no complications. I have my surgery consult on Dec 22 at UC Health in Denver. My symptoms have escalated since I completed Uceris, and I’m hoping to hold on until the first week in February for surgery. Happy Holidays to you!
Susan I hope all goes well for you at your consult and that your symptoms subside.
I hope your surgery was a success and you are healing with help from good caregivers. Rest and be well!