Problems several years after an illeostomy reversal.

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musikate
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/1/2009 10:41 AM (GMT -6)   
Hello
I have breathed a sigh of relief to find this board. After reading through many of the posts I realise that some of the problems I have been experiencing seem to be commonplace. I have a few questions but will tell you briefly about my medical background.

I am 25. I was diagnosed with Rheumatoid Arthritis 10 years ago when I was 15. When I was 16, as a result of complications with my RA, I developed colitis and had a full illeostomy - they removed my whole large bowel, along with some or all of my illeum. During this time I had a bag and no major complications. about 6 months later, I luckily had a full reversal.

My digestive system and bowel movements have never returned to normal. For the last 9/10 years I have had (fluctuating) diarrhoea, wind, cramps, particularly after eating certain foods like dairy foods, read meat or wine. I have also had recurrent thrush.

I am beginning to wonder whether I am suffering from food intolerances or yeast infections as a result of the operation. Obviously I have a history of immune reactions with my RA, and I also had eczema as a child and teenager, which now comes and goes.

I would be so grateful if anyone who might identify with this could respond and let me know how they have dealt with the problems. Also any tips on what could fix this would be massively appreciated.

When i had the operations, I was discharged and taken off their 'books' very quickly and didn't receive much after care or follow ups, and have spent many years ignorning these problems in fear that the doctors wouldn't really listen to me. It would be great to hear others' experiences.

Thank you

Kate confused

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 8/1/2009 12:52 PM (GMT -6)   
Kate - hoping you receive advice from someone in your situation and with your health history (colitis, having had large intestine removed, etc.).

I can only share with you what works for me. I had 90% of my sigmoid removed and 15 inches of my colon removed, from cancer. Had a temporary colostomy but that was reversed 8 weeks later, 10 years ago. I've never been the same since it was reversed. I now have multiple bm's each day, I never struggle with C, not quite D unless I eat the foods that do not agree with me. I kept a food journal for 2 years and did not stray from a low residue diet for that time period. I was almost petrified in eating the wrong foods for me. I also benefitted from weekly enemas for a while, sounds odd but they flushed out the stool and could give me a 3 or 4 day span of fewer bm's per day and formed stool. Then I had a few enemas work much longer than the 1 to 2 hours they should and one made me very sick. So after a few years of doing that I decided to allow my own body to adjust by eating plain foods, small in portion, sometimes skipping meals if I have a social engagement, etc. I'd have to say I do fairly well now but I feel like a live, walking around puzzle. If one piece of my puzzle is missing, I'm a mess.

Mostly I feel my best when I:

Eat low residue diet foods
Eat small portions, not overwhelming my gut with large meals
Keep my stress level as low as possible
1 capsule Colace, 50 mg each evening before bedtime
1 capsule Nature's Way Primadophilus Bifidus, each evening before bedtime
Exercise daily (ideally our treadmill)
Skip food after dinner, allowing my system a chance to calm down so I can sleep

I started to manage my situation much better when I gave up my dream of ever returning to normal (eating whatever I wanted, 1 bm a day) and/or trying to educate others about my situation. I no longer apologize for my needs, I just simply ask where the nearest bathroom is and use it for however long I need it. Not that you're trying to explain any of this to your friends or family. I tried for a few years. After a while I gave up, unless you've walked a day in our shoes, gone thru what we all have, I just don't think others can truly relate to what we struggle with. This includes doctors and nurses. They can get very clinical, comparing us to journal cases and how we "should" be doing post-op wise. And for the record, since I used to work for surgeons years ago, surgeons are notorious for being too cut and dry. They're just not very good at providing quality post-op care.

I do feel like you, that I've been lost in the shuffle too. My original surgeon moved 1000 miles away. His partner took over my care but then he recommended me to another colon surgeon. She's the one overseeing my care and she never even operated on me!

I wish you well.......
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening


Lyonene
Regular Member


Date Joined Jun 2009
Total Posts : 64
   Posted 8/1/2009 4:47 PM (GMT -6)   
I'm so sorry you've been dealing with this for so long. Have you ever been tested for celiac disease?
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