Colostomy Reversal and Hernia - Any Advice?

Bill

No apology needed as I am a fellow ranter. I see your point exactly. It is a far-reaching problem.

However, I don't think refusing to diagnose helps in any possible way. Unless they think it will go away by itself but that's highly unlikely.

Thanks for your superb analysis.

Charlotte

Hi Lifechange,

Sorry, I am just now seeing your post! Have you had the reversal surgery yet? I had the same situation with a ruptured colon due to diverticulitis and had an emergency colostomy. Shortly thereafter, I developed an incisional hernia on the right side that grew to the size of a bowling ball over the next year. Because the emergency colostomy surgery was so hard, I was afraid to think about any more surgery. I had become accustomed to having the bag, but the hernia was unacceptable, so I decided to go for a consultation. The doctors at the hospital where I had the colostomy surgery thought it would be too risky for me because of my cardiac problems. I got the feeling maybe it was just over their heads and decided to check with someone in a bigger city than where I live. I found an amazing surgical team at Baptist Hospital in Jackson, MS. They saw no reason not to correct the hernia and do a reversal at the same time. I am now 2 months out and doing great. I firmly believe that having the right surgeons and the right hospital is the difference in success or failure with this. I would recommend Dr. Fiser and Dr. Nicols to anyone!

Hi all,

I'm having another MRSA breakout! I don't know whether it wasn't cleared before or if it's going to be a recurring regular problem.

The good part is that I took a proactive position this time and emailed my doc with all my specifics and straight out asked for a Bactrim prescription and got it!

However, I am feeling funny and uncomfortable. My bowels are backing up, which terrifies me, and I feel all lumpy, and my gut sounds swishy. My imagination is way off the hook with wild ideas about all that might be going on.

The thing is, we need tests to see what's going on. I don't mind not seeing the doctor. All she does is load me up with shuck and jive explanations. But I would like some testing done so I quit worrying.

CharK

Hi, I ended up with a surgical hernia also a year after my reconnection... I had it removed last year. My doc said that extra weight does create an opportunity for hernias to flourish. 53 steel screws to put the mesh in place... I'm just now pain free... 10 months later. It takes a long time to no longer feel pain from those pesky screws...

Mary Beth

Oh wow, that sounds horrible! I can't even imagine that surgery.

Good luck to you. Don't try taking any air flights!

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Any update, CharK? How are you feeling now?

After fighting so many months, I have another pre-assessment date on the 7th. People are blaming NHS cuts, but it's the surgeon himself. He has ignored every fellow medical professional who has contacted him to find out why the delay and grudgingly saw me last month after I lodged a formal complaint. I never found out why I had a pre-assessment in March without a surgery date, and I was shoved out after 5 minutes without examining me or asking anything about the hernia. It's almost a year since this began with a perforated bowel during my hysterectomy, but my gynae and stoma nurse have been great trying to push this.

Thanks Superm,

I'm finishing my 3 weeks of antibiotics today and don't know what comes next with the surgeon.

I have an appointment with a regular doctor first of next month and I wonder if I can get a general assessment of current conditions since my initial emergency. Considering the renal failure, I wonder if there are any long-term effects.

I've only been treated symptom by symptom since then, so I don't think it's too much to ask for, is it?

In the meantime, I wait to see if my incision stays closed.

Thanks for asking and good luck on your procedure. Isn't it crazy how you get stuck with one doctor's opinion hanging you up?

Charlotte

Oh Charlotte. Very crazy indeed. We shouldn't have to fight every step of the way. If they had to live with it and every piece of crap that can often go with it, they'd not behave that way.

I sincerely hope you don't have long-term effects. Keep us updated on your progress.

Hello all. I had a colostomy reversal in January this year. They also repaired a hernia on my right side as well. All seemed well for about 2 weeks. I started losing weight rapidly, had no appetite, and became extremely sick pretty quickly. By March, I was back in a bag again. It's been 5 months since, and now I have hernias on my right side (lower this time) and a huge bulge at my stoma. Also, my colon, or stoma if you will, has been protruding out more and more each week. It went from flush with my belly to almost 3/4 of an inch as of today! I saw my surgeon last week, and he didn't seem concerned at all. No real pain, just discomfort. The good thing is, he's gonna take another stab at it next month, in September. I've got a barium enema to look forward to as well as a urologist consult in the next few weeks. The doc said he feels good about it. But, this is the second attempt, I'm lucky he's trying it again. I'm worried about it all. Not to mention that I'm going to be susceptible to hernias forever now. 3 major surgeries in 9 months. I can deal with hernias if I'm out of this damn bag!!!

Irjosh,

The hernia scared me! I was afraid to lift anything or go to the bathroom. I probably thought about what it was too much. I even went to the ER when it got bigger suddenly because I thought that meant it got bad. I was waiting for insurance approval and got panicky, I guess. They just sent me home lol.

I really am not hysterical, I just have moments...

Finding the hernia was actually unfortunate because it had nothing to do with why my stoma hadn't closed and it delayed getting MRSA diagnosed for another 4 months.

By the way, my doc ordered a full-screen lab test before I see him on the 9th. I will feel better with that. In September, I have to change docs because I go on Medicare, so I have to get my ducks in a row here. I don't know how to pick a new doc. Think I'll throw that out on a new forum topic. It's so nice to have resources and friends I trust. I love you Ostomares!

Charlottr

Hi Charlotte,

How is everything now? Hope the tests came back okay. I'm still waiting for my reversal and currently have an ongoing complaint with the hospital. It's beyond the joke now.

Hi. It's frustrating when they act like everything will be fine. They don't have to live with the problems and pain. I wish every success for your next procedure and hope it will be sorted.  

Hi!

I am currently doing better than well (knock on wood! Don't want to jinx myself!)

My doctor's visit felt completely redundant as my labs came back just fine. He assured me my little complaints will probably last a good while from having had surgery.

I have been so lucky in this life with having good health and I've not suffered many losses either (again, knock on wood and praise the Lord!) I totally took it for granted and even abused my good fortune.

So I was ill-prepared for the reality of a severe illness. The impact has affected me in so many ways! And I know that mine is small compared to what many of you have been through. I'm ashamed of my whining but I didn't know how to be sick or what it takes to get well. I didn't know that I could suddenly be unable to do simple things.

Beyond that, there's been mental anguish feeling vulnerable and helpless. Considering mortality, or even quality of life. Anxiety about what to expect. I still feel that way. I often think to myself "If I have to get a bag again...?"

I can no more explain or teach anybody these lessons...as a matter of fact, I could teach quantum physics more credibly than I can tell someone "love your life and don't ever take it for granted."

Sorry, I got carried away again. I just like to see myself ranting, I think.

Charlotte

Hello Charlotte.

Glad to hear that you are doing okay at present and long may it continue.

I just wanted to comment on your penultimate paragraph, where you say that you cannot 'teach'.

My take on this is that you share your thoughts very well and by doing so, you 'enable' people to learn (if they want to).

I could rant all day about the differences between these two approaches but suffice it to say that I prefer the 'enabling' approach rather than the 'telling/teaching', which I consider to be a form of bullying as it implies that the 'teacher' expects the learner to remember (and agree with) what has been said, rather than think things through for themselves.

Just a thought

Best wishes

Bill  

Wow... I feel so much better after reading this thread (but am so sorry so many of you are suffering!)!!!!

I had no idea how common it was to get hernias after abdominal surgery!!! I also had an emergency colostomy after my colon ruptured earlier this year. Three months later, I had my reversal surgery... and 5 months later had hernia surgery for hernias behind all of my scars (4 in total). It sounds like they covered my entire abdomen with one piece of mesh, so I hope this helps prevent them from recurring. It has been more painful than both other surgeries combined... beyond words. I'm only 2 weeks out, and I understand I will still be in pain for a few more weeks (per the doc), but after reading this, it sounds like it will be more like months. The pain is getting better, but each twinge scares me to death... the fear of getting that bag again is hard to shake.

If any of you have found any exercises or supplements to take, or anything to do to help prevent the recurrence of any issues, please let me know!! I heard the typical - don't smoke or gain weight. :)

Thanks, Kathy

Hi there. I haven't been too good in keeping up with questions and answers on this site. About 6 weeks ago, I was diagnosed with breast cancer, so now my reversal will be put on hold for probably a year as I will be having chemotherapy followed by radiation. My hernia is getting bigger, but that is not my priority at the moment. I remain positive.

I am a newbie to the site. I had a colectomy at the end of August and will see the surgeon soon about reversal. I am hoping it will take place in December 2017. I have just developed a large hernia just above the stoma. Do they always have to be removed surgically?
Also, is the reversal surgery as bad as the first? I have other health issues and the first surgery was pretty tough for recovery.

Hi all.

Well, I finally have a date - woo! 13th December, which is 8 months late. I have my follow-up complaint to thank for that as my gynaecologist couldn't believe it was still going on. He may have started this nightmare by perforating me but has been fighting my corner since March while the colorectal surgeon just did nothing. So I will be under his care at a different hospital, and the colorectal one will perform the reversal and parastomal hernia repair there under his watchful eye. I'm quite relieved after the awful treatment I received post-op last year and dreaded going back to the same ward with most of the same horrible nurses (except 4 who were brilliant). My gynae prefers sutures, so I'm hoping he'll insist on those instead of staples in the area that didn't heal for 7 months. Pity really, the hospital has continued defending the actions of one surgeon and made excuses for his behavior. I'm not letting this go, especially since losing my job due to it and being unable to claim sick benefit or look for another one until this was sorted.

I just got back from a cruise I'd booked in January since I was supposed to be fully recovered by now. No one medical told me not to go, and I looked on it as a way to relax after the physical, emotional, and mental suffering he's put me through. It didn't turn out that way as the hernia made me very ill, in agony, and I ended up confined to my cabin a couple of days after a severe bout of vomiting (my second lot in three days but the first was just twice). The ship's doctor thought it's becoming strangulated and could not believe I've been left this long, so it's just added to that stress and upset. I'm feeling much better but still not 100%. Now I have to hope I can get that money back from the insurance company. I did declare the stoma and hernia, so everything crossed since it's nearly £200. I made sure both gynae and colorectal will be told, and I have a letter for my stoma nurse on Thursday from the ship's doctor if she wants it.

Hi Kathy,

How are things going with you? Did you manage to find any answers? The weight thing isn't so easy. I have underactive thyroid then back issues caused my lack of Vit D, lack of estrogen and endometriosis led to limited mobility for 7 years. Finally get the last bit fixed with the hysterectomy and I get perforated so more weight gain. I want my life back and weight off.  

Hi everyone!

New here...maybe I'll find some support and advice after these terrible last 7 years.

Going back: in January 2017, I underwent emergency surgery due to sigmoid colon perforation + peritonitis (5 cm due to fecaloma). Lost 15 cm of colon. Have a stoma. Was supposed to be temporary (3-4 months) but it's been almost 15 months. The fecaloma was the result of constipation (unaware of this problem!) from the use of narcotics/opioids (Percocet about 25-30 mg/day). Nobody mentioned/warned about this side effect. This was treatment for Arachnoiditis diagnosed, by pure and lucky chance, on March 2016 based on MRI findings. Had been suffering from serious low back pain and burning along legs for 5 years prior to diagnosis. Had been told had disk bulges and pressure on nerve roots. Was given 3 ESIs with Depomedrol in 2011 - with no relief and worsening of symptoms. Was told the Arachnoiditis (never heard of this horrible disease before) was caused by the injections (not FDA approved and not recommended for epidural or intrathecal use). Was healthy and active before this nightmare began (swimming, trekking, skiing).

So, now I suffer from an incurable, extremely painful neuropathy (Arachnoiditis) ...and have a stoma. Stoma closure was offered to me but I understood (lots of reading) that another perforation might happen since I need narcotics 24/7 for simple survival - otherwise the pain/burning/electric shocks do not allow me to function at all.

Is there anyone here who can relate to this, in part or at all? I am completely alone: "friends" have disappeared as if I had leprosy and doctors seem to prefer not to touch me (too complicated?).

Happy for any word of support, advice, empathy...anything is welcome.

Thanks.