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9 replies

I feel like crying, but mostly I am mad!

LesandiegoLesandiegoMember
Went to the doctor today for what I thought would be my final checkup. First, I told the doctor that the meds helped me a lot, I finally got a part-time job and I feel that I am getting my life back on track.

I told him that I only go 5-7 times vs. average 10 times a day and he said that is still too much. This is contrary to what he told me 1 month after TD when he said I should be going 6-7 times a day. I thought I was doing good...

Then I tell him I want to take Lomitol and Bentyl before every meal to calm the loud noises in my belly. I want to eventually work my way up to a full time job and I would be mortified if these noises occurred while I am in a meeting with 10 men.

He then exams me (taking a really long time examining my belly) and I ask him just exactly what he is looking for. He first states "I don't know". Finally, he tells me I have a hernia in the location of the first operation. Probably caused by infection when my colon perforated in multiple places. This hernia is causing a blockage and making it difficult for me to digest food. 6 weeks ago, I showed him a video and you can clearly see the food being digested in the location of my surgical scar. I also asked him why my stomach looked like a butt. Deep depression where surgical incisions were done and huge muscle mass on each side. He told me that it was muscle and now he tells me it is a hernia.

He will not operate on the hernia for another 6 months.

I really wanted to have my life back on track, had a super positive attitude and thought life was looking up and looking forward for me.

This is such a set back for me. Nobody at work knows what I have been through for the past year, and I am not looking forward to the time when I need to tell t I need time off for another surgery. I was medically separated from my last job a year ago.
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Jan DollarJan DollarModerator, RN, retired
You certainly have a right to be disappointed, especially since you were seeing light at the end of the tunnel. You must feel like someone let the air out of your balloon! I am sure it does not help to know that others have been in similar situations. I also had an incisional hernia (found it myself and brought it to my surgeon's attention). I waited a full year post op to get it repaired. This was for two reasons. One was because I wanted to be off prednisone for a full year before another surgery. The second reason was that I just needed a "time out" from doctors and interventions. Basically, I had enough of it all. If I could stay away from doctors for six months, then maybe I wouldn't feel like a lab rat. It did help.

The good news was that the hernia repair was a cake walk compared to everything else. Just an overnight in the hospital, then I was back to my normal routine. Very little drama, and he even used mesh to repair it, to be sure it would hold.

Hopefully, you won't have to tell your coworkers about this until it is close to your surgery time. They don't need details. You can just tell them it is a hernia repair. Pretty common stuff, even for women. Of course, they probably will regale you with their own hernia surgery stories, which will seem like a day at the beach compared to your past experiences. Little do they know...

Jan Smiler
TE MarieTE MarieMember
As Jan said hernias seem to happen to quite a few of us. I had an incisional hernia operation 6 months after take down so that was 3 surgeries in 8 months. I had mesh repair too and since it was a big repair he had to completely open up my entire incision but it was still only 2 nights in the hospital and a piece of cake next to the other surgeries.

I also have what I call a "butt in the front". I lost all the prednisone weight after my surgeries plus had a horizontal scar from a hysterectomy at the bottom of the vertical colonectomy scar. I think there's about 5% muscle tone there, if that. I'm 2.5 yrs post take down and still go at least 8 times a day, if I'm lucky, and I take prescription Loperamide. (I have chronic cuffitis as well so I hope you have nothing like that.)

So please feel better. It sounds like you are doing well as your hernia doesn't appear to be causing you pain. I think it's good to have more time between surgeries for a vain reason on my part. I lost a lot of hair and some thought it was due to the anesthesia. It all grew back.
LesandiegoLesandiegoMember
It is more of a "discomfort" when food / gas has a hard time passing through the narrow opening between the hernia (I guess?).

I don't know if I am allowed to post a link to my youtube video (very discreet video) showing just exactly what is going on with my J-Pouch.

I am curious if my symptoms are similar to what other J-Pouchers with a hernia experience.

Moderator, if I am not allowed to post a video, please delete. Thank you.

http://www.youtube.com/watch?v=OHq-PAycUCA
Jan DollarJan DollarModerator, RN, retired
Your link is fine. Looks like a LOT of activity there! And, no, I never had that with my hernia.

It seems that you must have a lot of adhesions preventing your intestines from moving freely the way they should, basically creating bottlenecks in there. Looks pretty uncomfortable. Does it help to avoid roughage?

Jan Smiler
TE MarieTE MarieMember
A picture is worth a 1,000 words and your video is worth more than your explanation above. Your butt in the front is nothing like mine as your vertical scar is more like the grand canyon than a river. I don't know why he is waiting to perform surgery. My hernia was acting like a mechanical partial blockage but I couldn't see anything moving outside. I could push on the area and it was hard underneath - that was it. If I were you I'd push him for surgery or a reason that you can understand for waiting.

Please let us know how you are doing.
LesandiegoLesandiegoMember
Wow, thank you all for viewing my video. The only other people who have see my abdomen that know anything about J-Pouches are my surgeon and the nurses at the hospital. They made me think mine was a typical J-Pouch.

Glad to know that this can only get better (I hope!)

Anyway, I had my TD in April and my doctor refuses to do any surgery for another 6 months. I asked him yesterday "Do you mean 6 months since April or 6 months from today" His reply "6 months from today".

My pouch is expanding somewhat and Lomitol and Bentyl help me get through a 20 hour a week part time job because I don't eat breakfast before I go to work. I would be so embarrassed if I had one of those "uncomfortable" moments in a room full of engineers and military personnel.

The only food I should really avoid is dairy as it gives me diarrhea (it never did before). I could swallow my own saliva and you can see it travel through my stomach. LOL

Most importantly, thank you for validating my concerns. I do have faith in my doctor and I know he is an expert in J-Pouches. It was the first emergency surgeon who made that Grand Canyon. My current surgeon keeps reminding me that he cut below the belly button and he did not make that mess from the belly button upward.

Duh... I know this already and I keep wondering why he didn't fix this mess when he cut me open for the 1st and 2nd step of the J-Pouch in January and April of this year. I was joking because I thought it was just more cosmetic than anything else being wrong.
TE MarieTE MarieMember
You are working half time and not getting bad blockages and he is the surgeon! My hernia operation was 6 months after TD and my surgeon did make my incision scar and belly button look better. (He'd had to remove an abscess under my incision during my TD surgery and it had to heal as open.) I thanked him for the cosmetic surgery as long as he had to open me up so much Smiler I was expecting a very small incision and he had to open my complete incision up again as he said I had a "big" hernia.

Maybe you can ask your surgeon if he can do a fix on your scar while he is in for your third surgery. I hope you aren't mad anymore and feel better. Maybe you will avoid loosing part of your hair!
LesandiegoLesandiegoMember
I lost my hair after the initial colectomy only, but not during the J-Pouch surgeries.. Since it fell out 4 months post surgery, I really think my anti-depressant was to blame. I did a keyword search for the "Lexapro and hair loss" and there were pages and pages of complaints.

Anyhow, my hair is now really thick and curly vs. the baby fine super straight hair I used to have.

I am still disappointed that I have to go back to the #!?% hospital for yet another surgery. UGH!

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