Really Finding Life Difficult Post-Subtotal Colectomy Surgery

Hi All,

It's my first time posting here.

I'm 44, male, single, and had a subtotal colectomy due to ulcerative colitis just under 7 weeks ago and have been at home for just over 5 weeks after being discharged from the hospital.

I'm really struggling as it feels like my entire life has been turned upside down. I'm struggling with accepting the stoma, cleaning it, replacing the pouches, and I'm struggling with post-op issues such as inflammation in the rectum which has started to cause bleeding, and constant tenesmus which is impacting me greatly as I can't plan to go out as I'm constantly feeling the urge to go to the toilet (just the same when I was really ill with full-blown colitis). Yesterday, I was prescribed prednisolone foam for it. I've started to take this and am hoping that it will ease some of the tenesmus and bleeding.

I really regret having the surgery. I was diagnosed with UC last November (although I've had symptoms for 1.5 years) and then in March of this year had a really bad flare and ended up in A&E thinking all I needed was steroids to get the flare under control. In the end, I didn't respond to the steroids and they then gave me an infusion of Infliximab and then another accelerated dose of it a week later. I didn't respond to this either. I was also put on azathioprine, which didn't make any difference. The gastroenterologists had already started talking about potential surgery before the second dose of Infliximab.

I was shocked at the ‘s' word to say the least, but they explained why. I had gone into the hospital with severe acute ulcerative colitis and because I wasn't responding to treatment and the frequency of my toilet trips and bloody diarrhoea were around 12 times a day and not going down. The gastro doctors wouldn't release me as I was too sick and they weren't able to give me any more treatment because they said they had tried all treatment they were licensed to administer to someone with severe UC. As I was so sick and desperate, I ended up having the surgery in a semi-emergency type situation, but like many others, I don't see it (at least at the moment) as lifesaving, because although I've had symptoms for about 1.5 years, I can remember quite well how life was like when I wasn't sick.

Life is just so hard at the moment. I'm feeling all kinds of emotions (anger, regret, sadness, grief, anxiety, embarrassment). I was kind of expecting a miracle cure and it just feels like I've substituted a set of really severe symptoms for another set that aren't as severe but are still affecting the quality of life and my mental health. A few times I've just broken down and cried. I've had a couple of counselling sessions but they haven't made any difference yet.

I then look at my future options, which are either live with a rectum for a while, but this is already causing me problems and then the other two options are either J Pouch surgery or proctocolectomy, which is more pain. I'm not keen on either to be honest, and I'm particularly not keen on J Pouch due to the complications and more illness that people experience after having it, so will most likely go with the proctocolectomy. However, I've read about the potential risks with this option like sexual dysfunction and bladder problems and it just worries me even more. I think dating is going to be more difficult now anyway, but adding problems with my private parts would take it to the next level! :-)

I'm just reaching out for any words of support, any encouragement, or different ways of looking at things from those who walked on the same path.

Thank you.

Hello Henry44.
Thank you for sharing your experiences and feelings with us on this site and for inviting us to share our own ways of looking at things.
We each have our own experiences and responses to those, so they are unlikely to be exactly the same as yours. However, I do believe that many ostomates on here will identify with your feelings at just 5 weeks from being discharged from hospital.
My own similar experiences and feelings have long since faded from my immediate memory, but your story sounds very familiar to me.
In those early days I felt that treating the operation and all that goes with it as a 'trauma', helped me to contextualise it, and realise that those initial feelings might fade with time and perseverance in terms of adjustment. 
Having overcome previous traumas by writing rhyme about the feelings, this technique helped me document what was going on
and somehow helped me to put it to one side and get on with the rest of my (new & changed) life.
What you are going through is 'normal' as a post traumatic reaction and often time, patience, and adjustment  are  wonderful healers. Another thing that can be helpful, is to find a meaningful 'distraction'  (mine was writing), which may assist you in not focussing unduly on the negatives in life.
It seems to be a truism that: the more one focusses on something, the 'bigger' and more significant that thing becomes. Finding something else to focus upon can distract and diminish the negatives and can sometimes provide some positives to look forward to. 
If you are interested,  most of my early rhymes are listed in the 'collections' section, which become a reminder for me that I once felt like you do now! 

May your physical, psychological and emotional healing be rapid and may you emerge from the experience a stronger person. 

Best wishes
Bill

Thank you very much for your reply, Bill. I felt better just reading it, and I'm starting to go through your poems, which are excellent. I just read "Rectal Stump Mucus," which is one of the things I'm struggling with, as I mentioned in my first post. My surgeon told me to expect this, but he never mentioned anything about the frequency. I experienced this once in the hospital after surgery, and I mentioned it to one of the consultants doing the morning ward rounds. He mentioned this will happen once or twice a month with so much confidence. For me, it's a daily occurrence! :-)

Hello Henry44 and welcome to this site. You have definitely found the best place for a mental dump (if you'll pardon the expression) and helpful resources and responses for so many unanswered and troubling questions and hopefully resolutions. Your normal life B.S.S. (Before stoma surgery) is hopefully just on a temporary “hold.” Try and push the pause button and concentrate on total healing and caring for yourself. I know, easy for me to say, but au contraire, as I have posted before on this site, I am the poster child for the words “worry wart.” I have a difficult time trying to follow my own advice, but it does not mean I cannot comprehend what that might be. The good news is there are many on this site who have overcome the exact feelings you are currently experiencing. My heart goes out to you for a full and complete recovery in short order and you can get back to your young 44-year-old life! Onward and upward, all on this site will be cheering for you - keep in touch…hugs, jb

Hey Henry!

Things will get better, and soon you will be making poop jokes like everybody else. Good things take time! Slap on some happy music and tap your toes! 😀

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Henry44

 

I'm 44 as well. I have lived with a stoma since 2021. Initially, I was devastated! I had always been an OCD neat and clean freak. My condition was a mass diverticulitis which left me septic, and I was too proud to go find out what the problem was until it was almost too late. I had to have two surgeries to correct the issue because a general surgeon, not a specialist, botched my first stoma, and they had to close that one up and move it to the other side. I am now eligible for a reversal. I'm not sure I'm going to do it because I've heard horror stories about it.

 

What I can tell you, Henry, is my stoma is so routine now that I don't consider it a hindrance anymore. It's pretty much more sanitary than releasing your bowels the normal way. There are so many tricks that I could teach to make your life easy living with a stoma. Just ask anytime!

Be well, you will live, and you will understand very soon that it doesn't impede on your life as much as you are concerned about it being now.

Hi Henry, 

I know how you are feeling and can relate to your feelings at 5 weeks post-op. I've had diverticulitis for many, many years. I also did the medication route and fought the idea of surgery for the last 5 years. In that time, I was hospitalized three times, and each time I insisted on treatment by medication. The thought of a colostomy terrified me, and I wanted no part of it. 

Fast forward to September 2023, another hospital stay with mega antibiotics for a week and a 10-day supply for home. I really never felt better after that, and in October, I was in so much pain that I returned to the emergency room and was immediately admitted and had no choice. Sepsis, perforated colon, and intestinal bleeding meant emergency surgery and waking up with my colostomy. 

After a week in the hospital, I came home with a wound vac on the area where my stomach had been cut and immediate darkness. I seriously did not turn on a light, TV, or any music for two weeks. I cried every day, anxiety through the roof. Finally, the third week, my son yelled at me, turned all the lights on, turned my TV on, and told me to start living. 

At first, I was really ticked at him, but it was what I needed. I didn't jump out of bed, but I started to watch TV, turn on the lights, and slowly came back. 

I say all this because I was where you are now. This group really helped me at the beginning and made me stronger mentally. I was finally able to take a shower after the wound vac was removed, and my energy started coming back, and I have not looked backward. 

To be pain-free and alive is the most important thing to me. I get to see my family continue to grow, spend time with friends, and eat anything I want without discomfort. Maybe extra gas, but I'll take that in a heartbeat. :)

Hang in there!! Get angry, but don't live there. Being depressed and sad is normal. Feel all the feelings. You will be much better for it in the long run. And of course, keep in touch here. The best group of people I've had the pleasure to know.

 

And the jokes are always good! 😊

Hi Henry, sending you a big hug 🤗. It may not seem like it now, but things will get better. I'll be praying for you ❤️‍🩹🙏

Hi Henry44,

I went through a very similar situation to you in August 2022. I had only been diagnosed with UC in June '22 and had my first bad flare-up in August '22, which ended with a 4-week hospital stay and emergency surgery to remove my colon and "gift" me an ileostomy.

The feeling of tenesmus will pass and the prednisolone foam will greatly help. Your body has been through a lot; it needs time to adjust to the new plumbing and to heal. Give yourself time, it will improve and it does get better.

I too went for counseling and, like you, didn't think it was helping much, but trust me, even though you (and I) may not be aware of it, the counseling does help and gradually you'll feel better.

The key is to give yourself time and be kind and patient with yourself. You've been through a lot. It's perfectly natural to experience a range of strong mixed emotions, and trust me, these too will settle down over time.

Hope that helps,

Take care,

David

Hi Justbreathe, many thanks for your reply and for your good wishes and words of support. I really appreciate it. :-)

Thank you, Kittybou! Yes, music is something that really helps me to take my mind off things.

Hi ScottMac9979, thank you for sharing your experiences. I'm sorry to hear the first surgeon messed your first stoma up. We really are in the hands of these surgeons and are putting our confidence in them that they will do the best job possible. I'm so glad to hear your stoma isn't a problem anymore! I would love to get to this stage. Thank you very much for your encouragement!

Hi Nini4, thank you for sharing some of your struggles and how you came out better on the side. I take a lot of heart and inspiration from this. Thanks very much!

Thank you very much, DexieB!

Hi David,

Many thanks for sharing your experiences and for your advice. It's a real shock when your life changes so quickly in such a short space of time. I don't want to speak too soon as I had a really bad experience in the hospital with not responding to medications, but I've only taken Pred Foam for 3 days and I noticed a big difference today and not having anywhere near the same level of feeling of needing to go to the toilet that I've had over the previous 7 days. I'm going to see a GP tomorrow to see if I can switch from the enema to suppositories. I'm finding the enema difficult to put in. While I was in the hospital, I kept having to ask the nurses to put it in.

Yes, I'll give myself time and be kind to myself. Family members and my counselor have also been saying that I'm being too hard on myself and not giving myself enough time to get better, considering I've been through so much.

Thanks again for your advice. It was super helpful!

You are not alone. My health issues are totally different but I share the  experience and emotional issues.

I suffered for almost 40 years. Then an emergency iliostomy. I knew I was critical. Before the surgery, I told the trauma surgeon if it's difficult, just let me go. I'm not afraid to die. I suffered pain all of those years and I was at peace. Imagine my surprise when I woke up the next day and then spent another 80 days in the hospital with pain that could not be controlled.  I felt betrayed and enraged.

I am still angry but surviving. I have learned a lot from this site. I wish I had known about it a lot sooner.

You can expect to learn many things and get your questions answered.

 

kk

Thank you very much, KK. It sounds like you've been through a lot. Yes, I'm finding this group to be extremely supportive.

Hi Henry,

So glad to have found this post today. I could have written it myself.

I'm 6 weeks post-emergency surgery and, similar to you, I had a normal life for 41 years so I didn't feel grateful at all for my life-saving surgery. My mild proctitis had been in deep remission for well over a decade without any medication, so to go from that to emergency surgery with one flare-up has been shocking and traumatic, to say the least.
Like you, I'm still experiencing rectal bleeding 3-4 times daily. It's continent at least, but I find it's stopped me from really moving on with my new life and adjusting to the ileostomy. I'm still using Pentasa suppositories and they will move me on to steroid enemas in a few weeks if there is no response.
Because I failed all the medications when the flare happened, I'm finding it hard to believe that anything will help with this bleeding. I think I'm just frightened really about my future prospects for quality of life and my thinking has become negative. I am going to seek some counseling.
Can you let me know how you are getting on now?
Felicity

Hello,

This is also my first posting. In my area, there is not even an ostomy nurse available, or folks with like problems who get together at times and support each other face to face. Anyway, my condolences on your upside-down turned life. They say time heals all wounds, but... Even if it were for a time, it is likely that something else undesirable comes up after a drastic procedure. (No, folks, this is not a negative post, you should hear me when I am). Anyway, my colon surgery was 2 1/2 years ago, has not gotten better and got worse 2 years after. At this moment, and as far as I know, I am still in remission, but things seem to revert to the way things were prior to me having to have emergency surgery. The only question I have at this time is, did anyone else on here also have a Hartmann's procedure after colon resection.

Oldtimer, soon to be 84.

 

 

ConvaTec has an amazing stoma nurse.

Very helpful, even has a good sense of humor.

Hi Felicity,

I'm so sorry for the delay in replying to your message. I've only just come back to this thread.

I've had problems with proctitis since I wrote the original post. It's been 5 months since my bowel removal surgery. I probably had around 5 weeks when I was feeling well. I've tried prednisolone suppositories, foam, and liquid enema (all were very difficult to retain at the start, but eventually, I was able to retain them overnight).

In the end, a combination of prednisolone liquid enema and Pentasa suppositories put the proctitis under control, and I felt more like I did before the op. However, my gastro consultant asked me to stop this combination because she wanted to see if the treatment had worked, or if I became sick again quickly, it would be an indication that I would need to be put onto a biologic.

Unfortunately, after stopping the prednisolone and Pentasa, I was bleeding again within 1.5 weeks. I'm now waiting to get started on a biologic (Infliximab). I'm hoping this actually puts the proctitis into remission for an extended period of time so I can get on with life and come to terms with living with a stoma, which I still haven't fully accepted. Also, the thought of further surgery just freaks me out at the moment. I'm hoping the biologic will be a better long-term solution than the steroid approach. Prednisolone just seems to be temporary and tricks me into feeling well.

How have you been getting on since you posted to this thread?

Hi Henry, you are not alone. I hate mine. I have had very many complications but don't have a choice but to push through. Sometimes you're just in survival mode. It isn't very glorious. I know some people that I see on YouTube make it look sort of easy, like a nice lifesaver. I have not had the same experience or results. I am happy for those that do. I have such emergencies that I have to learn how to empty the bag immediately in the car and pull over on the side of the road. Two surgeries and seven months of complications. Hang in there, you're not alone. My typing is bad, sorry.

Hi Henry44,

Nothing has worked for my proctitis unfortunately. I haven’t tried infliximab for it, because I failed three rounds of it during the flare and so the gastroenterologist was not confident it would be worth exposing me to the possible side-effects for a rectum that is not doing anything. I tend to agree. 

I’m not keen on further surgery but it looks like that’s the route I’ll be going. I’ve talked to quite a few people who have felt better with all the diseased bits gone and their side effects have been minimal. Of course I’ve read all the online horror stories about sexual and urinary dysfunction so I’m terrified, but I do have a good surgeon so I’m hoping for the best.

I’ve ended up thoroughly depressed and seeing a psychiatrist. I think the sudden change of life has been too much to cope with, and the ongoing proctitis has prevented me from properly moving forward and adjusting to things. I hope you’re doing better mentally than I am! 
Take care, Felicity 

Hi Felicity,

You sound very much like me. 

I had my second Infliximab infusion last Friday and had an allergic reaction to it during the infusion. I've sent a message today to my gastro consultant through an IBD nurse to see if it's safe for me to continue on Infliximab. Proctitis is the only thing that is holding me back. I'm getting used to the ileostomy and it isn't causing me any problems.

I'm also now seriously considering the total proctectomy if the biologic fails. I'm also fed up of sticking medications up my backside! However, the potential side effects you mention terrify me as well, but whatever option I have isn't ideal. It's choosing between a constantly inflamed rectum, bleeding and having to try different treatments with weird side effects or having it out with the possibility of bladder dysfunction and/or sexual dysfunction which may or may not happen. I'm coming round to the idea that the latter option is the better one.

All the best!