Post colectomy questions

[Chrons Ma]

Originally posted in different section (as I am the parent of a 24yo diagnosed at 15, I posted in parents section) I have 2 questions for those with a stoma

1. Re rectal stump discharge. How often should this be occurring ? Son is 1year post-colectomy and bloody discharge has increased. 1-2 x per week has recently become 3-4 x per day. Nausea and general well being has declined since the increase. We are fearful of fistula recurrence, as the anus/rectum was the problem area for this pre-op
2. Pain post-op. This has remained largely unchanged post to pre-op status. It is extreme. Hospitalization for I.V Fentanyl on a PCA occurs reasonably regularly. Current theory is extreme abdominal wall nerve stimulation has occurred due to 2x ops in 4 days (first was endoscopically. Second was done due to stoma strangulation on day 4 following introduction of solid food). Specialized radiologically guided steroid and local anesthetic will be done over the next few weeks. Has anyone had experience with this please ?

We were under the illusion that the unwelcome colectomy would at the very least, give our son back his life. It has not. His quality of life remains no better than it was prior to the surgery. He is alive (sepsis from crohns = have a colectomy or die) but is not yet living. Has anyone else had a prolonged recovery but eventually a happier outcome than he/we are experiencing ?

 

[Tubes]

First off best wishes to you and your son.I was 10 when I started having issues with crohns and I was 22 when I had a total colectomy due to toxic mega colon.I had 3 surgeries in 7 months,ended up with a stoma for 7 months and then they went with a J-Pouch.I had the J-Pouch for about a year and I was sick all the time during that year before the J-Pouch burst and I’ve had a stoma ever since that was 15 years ago.

1)After the first month or so I didn’t have much rectal discharge but the first few weeks was bloody then it got to the point I’d feel a slight pressure maybe once or twice a week and I’d have a small amount of discharge that was either clear or kinda mucus-y.About 2 years ago I started having alot of discharge out of my rectum with a fair amount of blood,pressure and pain I found out my rectum was greatly diseased it caused a bunch of fistulas and severely damaged my bladder so I had my rectum removed and my bladder reconstructed.

2)After the colectomy I only had pain for about 4 to 6 weeks my problem was very watery stools at great frequency(like 30 times a day) it was impossible to leave the house.My problems with pain came after the J-Pouch surgery I just never felt right after that and I had zero control of my bowels which again made leaving to house pretty tough and working impossible.That year with the J-Pouch I was constantly in the hospital with Pouchitis,C-Diff,flares,nausea,blood transfusions,etc.Once the pouch burst and I went back to the stoma things started to get better for awhile then scar tissue caused me to have blockages very frequently.I had a several year battle with pyoderma wounds just fun stuff all around.

Being 22 and having a total colectomy was awful I absolutely hated my stoma then.All my friends were out living life,partying just having a grand old time and I was stuck at home in the bathroom or the hospital.My friends & girlfriends weren’t there for me at all they were more concerned with partying so I cut those people out of my life.There were some really dark times for me as I had zero social life or friends for a long period of time.There was a few year period where all the pain,surgeries,being in the bathroom or the hospital all the time and all my friends and most of my family not being there for me lead me to a pretty deep depression I was miserable.Then I had a talk with my mom(who was awesome from the second I found out I was sick at age 10 through all the surgeries up until she passed away a couple years back.she was always there for me and it was hard for her because up until she died and before I was sick she dealt with long bouts of multiple cancers but she would dropped everything to help me) who kind felt the old me was dead I used to be full of life & energy,was always in a good mood(even while sick) and was very funny,She totally got why I wasn’t that way anymore but she missed that me and that conversation was very eye opening for me and I realized I missed that me aswell.

For so many years I tried to not sell how sick I was for the benefit of everyone but myself and then I came to the realization that those people didn’t care about me and it was really hard to put on the facade of the happy & funny guy when my reality was nothing to be happy or funny about.After that conversation with my mom I really worked at bringing the old me back and to have a positive attitude even though life had been constantly kicking me in the balls for multiple decades and it was tough and I still have my bad days but the last 5 or so years I’ve been the best mentally since before this whole 25 year ordeal started.One of the things that really helped me was video games I loved games since I was a kid but I had stopped playing for more than a decade just cause I was in a really bad place but in 2017 before my most recent surgeries I bought a nintendo switch and I fell in love with games again and it gave me something to enjoy which I hadn’t had in a long time which really helped during the recovery as my mom was the only person that truly understood what I was going through and she had passed away before my surgeries and that was very tough for me so having any distraction to take my mind off that or all my health issues was much needed.

My Rectum removal & Bladder reconstruction surgeries were the hardest recovery periods of all my over 20 surgeries and having them at the same time was awful I had over a year and a half before I started to feel somewhat normal but now I’m able to go places and do things within reason.I still have my bad days occasionally were I just want to stay in bed but on the whole its the best I’ve felt in 20 years it was just a horrible road to getting there.

 

[Chrons Ma]

Thank you so much for having the courage to share your story with me. Your courage shines though.

I feel for you with the loss of your Mom from your life. She was clearly a wonderful selfless human who loved you dearly. Your relationship sounds similar to that I have with my son.

There are no words to express how deeply I feel for you and the horrors you have lived through. I am delighted that you are feeling so much better. Keep on keeping on and thank you again for your post

 

[Tubes]

Thank you so much for having the courage to share your story with me. Your courage shines though.

I feel for you with the loss of your Mom from your life. She was clearly a wonderful selfless human who loved you dearly. Your relationship sounds similar to that I have with my son.

There are no words to express how deeply I feel for you and the horrors you have lived through. I am delighted that you are feeling so much better. Keep on keeping on and thank you again for your post

Thank You very much for the kind words.

I think a huge benefit for you and your son is how much stuff has advanced over the years when I originally got sick in the early to mid 90’s what they knew and could do in this area was so limited so much so for the 1st couple years they thought I just had a stomach bug but even me at 10 years old realized you don’t normally have a bug for multiple years straight but the doctors didn’t want to listen to a kid and my parents listened to the doctors at 1st because well their doctors.

In 2017/2018 when I got severely sick I had a bunch of new doctors and it was night and day from my previous experiences as they were so thorough with tests and sending me to various specialists for all of my symptoms and they got to exactly what was wrong and after a bunch of surgeries they fixed me as best they could but my insides are still a mess due to 2 plus decades of damage & poor treatment.With how good those doctors were I wish it was like that when I originally got sick because most likely I probably wouldn’t have had to go through that hell I did for so long.

 

[Chrons Ma]

I would like to say I had faith in the medical system and the capabilities of the Doctors attending our son, but I can't. Case in point May 2018, when a second hospital admission in 4 days for what was clearly an infection related to Crohns, resulted in septic shock. How can someone admitted by ambulance at 5.30am, sit largely ignored by Dr's and go into septic shock round 3 in the afternoon??? Red flags for infectious states that could lead to sepsis 1. The young 2. The elderly 3. The chronically ill 4. the immunocompromised. Son was 2 out of the 4. Duh. Had I not called his gastro at 2 to report symptoms and the lack of care and attention, he almost certainly would be dead. Unfortunately the period of unattended sepsis was the last insult his gut could take, and it was "have a colectomy or die". And what transpired from that point couldn't be scripted.

It seems as if the arsenal that can be offered is the same as it ever was. Maybe this is a reflection of being In the tiny country that New Zealand is. Good Doctors do exist, but finding them, and having consistent access to them through particularly the public hospital system, is hit and miss.

I am hoping beyond hope that his rectum (which was always a source of problems with fistulas) does not have the issues that yours did, and now 1 year on, need removal.

 

[Tubes]

I’m sorry to hear that I didn’t realize it was so difficult finding quality health care in New Zealand.

In all my year’s dealing with crohn’s my rectum was never a problem until about 2 years ago.Since I had my total colectomy I have gotten 2 to 3 scopes a year(they’d scope the stoma and the rectum) and my rectum always came back fine.When my issues with my rectum started I had it scopes less than 3 months prior and it was fine so the doctors where shocked at how quickly it deteriorated and became completely diseased.

Before the surgery they warned me about the high likelihood of losing my sexual functions but at that point I was so sick I didn’t care luckily that didn’t happen as post surgery my rectal spasms were so severe that medication they prescribed to combat it its main side effect was making you super horny which was both good & bad..Good because it let me know it still worked & bad because I just had rectum removal & bladder surgery that was not fun so I had to decided whether I wanted to deal with the pain & discomfort of the surgery or the side effect of taking the meds that are supposed to help me.

 

[Chrons Ma]

Thank you for being so candid. This is helpful information.

I am so sorry you have had such a hard time with this all, but positive to know you feel like your life is making progress now. Information sharing like this gives me hope there is light at the end of this dark tunnel. Once again, thank you.

 

[Tubes]

No problem with everything I’ve been through I got over stuff being embarrassing along time ago and if the info helps somebody that’s awesome that something good came from it.

When I first got sick and for the better part of the 1st decade of my illness I was kinda kept in the dark because I was young and the doctors didn’t want to worry me about something that may or may not happen so even when I pushed them to inform me on atleast some of the possibilities both good and bad they always went in the ultra positive direction never acknowledging the chance of something bad happening and usually especially in the 1st decade something horrible happened.My Parents were dealing with various health issues themselves and working so only wanted to hear positive stuff on me so they didn’t press the docs to explain the negatives and instead they just dealed with them as they happened.

I remember when I had my total colectomy the docs told me it would be one surgery and I wouldn’t end up with a bag when I pressed them on the possibility of something else happening on the negative side they told me it wouldn’t so there’s no point in talking about that stuff.So I woke up from surgery with a stoma and the info I would be having atleast 2 more surgeries in the next 6 months and I had a meltdown but I quickly realized there was nothing I could do about it but deal with it.

To contrast that when I had my rectum removed I was told all the possibilities so I had time to come to grips with all of it and wasn’t going into it with the fear of the unknown stressing me out.What amazed me is the second I woke up from rectum removal surgery I felt so much better even with the post surgery pain and discomfort.I only had rectum issues for 6 months but they were hell and I was miserable that entire time so to see how quickly I felt better overall really surprised me.

 

[Chrons Ma]

Son has commented on the same thing himself. Sugar coating the facts does no one any good in the long run. Facts have to be presented - in a rational manner - for sure - but presented none the less.
Your info has been really helpful to me, as I need to prepare myself emotionally for all possibilities. My way of building a game face and being strong for him.

Personal question, but do you have a partner ? This is sons biggest fear, that he will not be able to find someone to love and accept him unconditionally. Not helped by having had someone (seemed the ideal fit as had been raised with a parent who had a stoma) who turned out to be a cheating, lying, deceptive, manipulative excuse for a human. Break up was devastating on top of the surgery, and social isolation has made it difficult to get out and meet anyone new. Second to last contact with said excuse for a human - "Good Luck with finding someone who accepts you as I did". Last contact was to remind him it was the 12 month anniversary of his operation.....Who does that ????
I digress but....SERIOUSLY

 

[Tubes]

I don’t have a partner currently as I’ve had issues finding the right person that’s alot to take on for someone.Before I had my colectomy I was sick for 2 straight years really bad and I was dating a girl who wanted to party instead of hanging out in hospitals so we ended it.After my colectomy I was out of work for a year having multiple surgeries then once I got the J-Pouch I returned to work and I dated a couple girls over that year but nothing too serious and when my health became an issue they were quickly gone and I totally got it that they in their early 20’s didn’t want to deal with that and wished I too had the option to bail and I’ll take the blame in those instances as I’m guessing I wasn’t the funniest person to be around when that stuff was happening.

The worst was near the end of my time with the j-pouch I dated a girl who had her own baggage in that she had a kid from another relationship and that dad wasn’t involved in her or the kid life and wasn’t supporting them.I told her upfront my health issues but she blew it off as not a big deal soon after My J-Pouch burst and I had a stoma again.When she visited me in the hospital a nurse came in while we were chatting and uplifted my sheets to see if I had any output from my stoma the girlfriend freaked out when she saw the stoma and just left the hospital and wouldn’t answer my calls and that was it.A few years later she texted me out of the blue asking if it was okay if she called me and I said sure.She called me and we a cordial talk where she offered to take me to lunch just to chat and I said okay.At the lunch she asked me to take her back saying its been very difficult finding guys that are willing to take on a woman and her young child and how awesome I was to take them on while I was going through all I was and how shitty it was of her to bail on me right after surgery and not talk to me for a couple years.I quickly put the kibosh on any getting back together discussion as I was very offput by her bailing on me post surgery when I needed her only to return a few years later begging me to take her back because things were rough for her now finding someone and if they weren’t I probably wouldn’t have ever heard from her since.

I’ve found with my illness I’m happier not in a relationship as I don’t need the stress.I’m not writing off ever being in one again its gonna take someone real special.I’ve got a couple good friends I hang out with when I’m up to it and they are good about being understanding when I can’t do something because I’m just not up to it which is totally different from my friends and family when I was in my early teens and 20’s who brought me extra stress in an already stressful time

 

[Jo-mom]

Tubes - way to go! I applaud you and thank you for sharing your story. You sound like a great catch and with your great attitude, the right person will come along one day when you are ready and wanting.

 

[Tubes]

Tubes - way to go! I applaud you and thank you for sharing your story. You sound like a great catch and with your great attitude, the right person will come along one day when you are ready and wanting.

Life’s weird I think one of the blessings in disguise of my illness was it helped me see the true colors of alot of people in my life and it distracted me when crappy things happened with those people that i normally would have stressed out about when I didn’t because I had to focus on getting well.I never really harbored any animosity towards those people even when the bad stuff was happening as I understood they were young and wanted to enjoy their life and honestly I would have loved to party and live it up but it wasn’t in the cards for me.

Being sick before my teens and then it getting worse through my teens was eye opening seeing my friends date and just live life while I was the kid who was out of school alot,being in the hospital,constantly excusing myself to go to the bathroom,sweating and weight fluctuating due to steroids made me miserable at the time and there’s nothing anyone can say or do to make experiencing that any better.Then once I started feeling better for awhile got off the meds and lost the weight suddenly I had girlfriends but the second my illness came back those girls where gone and it showed me how superficial all that dating stuff was.When I got into my 20’s alot of the girls I dealt with where more immature then the ones I dealt with in my teens.

When I was younger I used to obsess about being in a relationship because that’s what people are supposed to do but my life experiences have taught me that I need to focus on myself and my health first and foremost and I’m a fan of as little drama as possible in my life.The other weird thing is when I’m not looking for someone that’s when they appear in my life only problem is those that appear have been a negative.

 

[Chrons Ma]

Tubes - way to go! I applaud you and thank you for sharing your story. You sound like a great catch and with your great attitude, the right person will come along one day when you are ready and wanting.

Could not have said it better myself. You go Tubes !!! There has to be a special person out there somewhere for both you and my son.

 

[Tubes]

Could not have said it better myself. You go Tubes !!! There has to be a special person out there somewhere for both you and my son.

Thanks.
How’s your son doing?

 

[Chrons Ma]

Shattered. Struggling to process the insult that 2 days back to back of out of town of specialist appointments were, and that we are not a lot further ahead.

Having waited since October of last year to see a pain management specialist, following a talk fest of 90,minutes, he has to wait some more for ANOTHER appointment to be scheduled for rectal sheath injections for pain. We were all under the illusion that having had the referral made from the surgeon, with back up from the gastro, with a 3 way conversation having occurred between all said specialists, we would have a brief consult, followed by the procedure. Nope. A lot of discussion re intensive pain management courses. 3 weeks of immersion in breathing techniques, yoga, mindfulness etc etc. Son has consulted with the psychologist who runs the course. Said professional said son has done a remarkable job at developing techniques and coping strategies, and he doubted that there was much if anything that the course could add to help. Pain management specialist didn't want to hear this. $895 thanks. And the irony of asking re sons employment status and if financial pressure may be forming part of the picture of uncontrolled pain...….

New gastro has never had son on the table before. Discussions re drugs used in the past for rectal exams went out the window, and it was arrogantly proven at sons expense that fentanyl and medaz was not enough to sedate him, once he had had the max dose and was still screaming and writhing on the table. Locals into the anus also had to be used in order to pass the scope through. Apology was made after the fact, but hay, too late for the patients comfort levels then isn't it ? Flexi-sig sadly revealed active CD in the anus/anal canal, so removal has been mooted. I thought I had done a good job of preparing myself for this, but apparently not. I have spent the last 2 days feeling numb and quite nauseous. How much more does he have to lose before this nightmare is at an end ? I have remembered also that due to his particular internal physiology, the chance of nerve damage was considered to be higher, and this was another reason it was left at the time.

Gastro and surgeon will be liasing and a joint consult will ensue, with an EUA to be scheduled with both of them present. Discussion in and around further diagnostics for the bundle of symptoms has also been loosely discussed. Gastro agrees there may very well be more going on. He admitted CD can be extremely complex, and sons case falls into this category.

I can't adequately express my frustration nor my sorrow. I am grateful for the ability to discuss all this in this forum, knowing all who contribute here understand. Thank you for your concern Tubes.

 

[Tubes]

I wish the both of you well and that this nightmare ends as soon as possible.

The waiting is awful as you just want answers and the pain to end so when you get to the point where there seems to be a light even if its only flickering at the end of the tunnel and you get an appointment where you hope against hope that will bring you some kind of relief only for it to lead to more pain & waiting its completely heartbreaking,deflating and you get to the point where you question if the misery will ever end...I’ve been there.

My mom was usually pretty good at putting on her game face for my sake when these situations would happen but there were times where she totally lost it because it just seemed like the nightmare would never end.From a young age all my nurses and doctors said I was incredibly mature & calm in the face of all this unpleasantness.I’ve always tried hard to keep a positive attitude but it gets real hard dealing with months and sometimes years of pain,discomfort and just not being able to live a normal life.It gets to the point that you feel like your body hates you and there seems no end in sight to the misery but in my case it was just a long ass time to get to my light at the end of the tunnel and I hope for your son & yourself that there’s a quick detour that get you to recovery way quicker than I did.

When I was going through some of may worst health problem like 13 or 14 years ago post colectomy a few of my doctors & surgeons asked if they could give my contact info to some of their patients that were really struggling in hopes that my positive attitude and the fact that I wasn’t a doctor might get through to those patients because I was a real person that really experienced all this stuff.I didn’t think I would like doing that but ended up being very cathartic.I got spoiled with the first patient I talked to as she ended up being a huge success story she was 19 and right as she was graduating from high school she started having really bad flares and ended up having to postpone going to college due to how sick she was.Her doctors felt they could remove a small portion of her intestines and she wouldn’t end up with a bag but she’d be on meds so she had the surgery and 3 months later she started going to college,eventually graduated college,got engage to someone she met at college and they got married and have had 3 kids at this point.I still hear from her a couple times a year and she’s doing great.

I’ve also had bad experiences talking with patients as they use me as a vessel to vent their frustrations some get real nasty and go way too far which is why I stopped letting my docs give out my info as I didn’t need people I never met before yelling at me when I’m trying to help them.

 

[Chrons Ma]

I hear so much of my son reflected in what you say. He has often said his body seems like a rental and his landlord is constantly trying to evict him. He too has had many comments on his maturity and stoicism. I think it must be forced to develop through the constant trials and suffering. It was sons battle with his health that sparked his interest in paramedicine. Prior to qualification as an EMT whilst working as a volunteer, his mentors could not get over his natural empathy with patients. Like yourself, he has considered reaching out to other CD people. It is a wonderful thing you have done Tubes. I am sorry to hear that has had such a nasty down side. Do you have a Crohns and Colitis Society or such where you are ? Son put forward a proposal to the NZ version and they were not interesed. The support that is offered here is basically zip. Cancer is the Holy Grail and no other disease gets much of a look in. Sons best friend has cystic fibrosis and has found the exact same experience. I was forced to make a complaint re a nurses comment "At least you only have crohns and not cancer". That sort of minimising comment has come from many over the years, but you do not expect that from front line care professionals. Unacceptable !!!

 

[Jo-mom]

Hi Crohns ma - I'm so so sorry for what your son is going through, and for the pain you are going through as well. Being a parent, you only want your children to be happy and painfree. It is heartbreaking that you son is suffering so. I am so glad that Tubes has experience with this and is giving you such great advice and sharing experiences with you. I am a mother of a son with both crohn's and spondyloarthritis and last year, he could hardly walk. I had to help spongebathe him, dress him, he couldn't drive, go out with his friends, basically was housebound - couldn't make it to the toilet in time. This was when we discovered he had crohn's as well as the arthritis. He is now doing physiotherapy 3 times a week and is on medication. A year later, he is driving, walking, working part-time (he still attends university full-time), enjoying going out with his friends, etc. He has had a couple of flares during the past year but overall, nothing like he was last summer. It got better. I cried often during that time. I know what it's like to watch your child suffer. I am so hoping that there is light for you and your son, and there will be. It just seems like it never will happen. It will happen. When you are in the middle of it, it seems endless. In the meantime, you have to take care of yourself so you can be there for your son. I would often take naps during the day because I couldn't sleep at night (worry kept me up). I would go to the gym and eat properly, and still socialized (although my mind was not always present). Please take care of yourself as well. Big hugs

 

[Tubes]

I hear so much of my son reflected in what you say. He has often said his body seems like a rental and his landlord is constantly trying to evict him. He too has had many comments on his maturity and stoicism. I think it must be forced to develop through the constant trials and suffering. It was sons battle with his health that sparked his interest in paramedicine. Prior to qualification as an EMT whilst working as a volunteer, his mentors could not get over his natural empathy with patients. Like yourself, he has considered reaching out to other CD people. It is a wonderful thing you have done Tubes. I am sorry to hear that has had such a nasty down side. Do you have a Crohns and Colitis Society or such where you are ? Son put forward a proposal to the NZ version and they were not interesed. The support that is offered here is basically zip. Cancer is the Holy Grail and no other disease gets much of a look in. Sons best friend has cystic fibrosis and has found the exact same experience. I was forced to make a complaint re a nurses comment "At least you only have crohns and not cancer". That sort of minimising comment has come from many over the years, but you do not expect that from front line care professionals. Unacceptable !!!

I don’t believe we have a C&C Society but we have something similar about 90 minutes from me they helped my with getting insurance,finding specialists and dealing with disability stuff.Its been a couple years since I’ve been there as they have tired to start support groups but turnout was poor so they started doing them once every few months.

I haven’t had the best time in support groups as when I 1st got sick in my early teens the other kids in my group didn’t want to talk so they moved me to the adult group and they were really nasty.As I’ve gotten older I’ve tried various groups in my 20’s and early 30’s and had similar experiences.I’m a friendly easy going guy who wanted to learn and help others so when I’m around people that are the opposite I’d rather just avoid it if I can.

I know my health situation sucked but it would be really hammered home when I’d be in various hospitals for weeks and sometimes months they have social workers or therapists who would visit the patients who were there for awhile and they’d ask me to detail my history with crohn’s and by the end of our talks my health would genuinely depress these people these people were more bummed out about my health than I was.