Long time no see - time for an update
#338633 - 11/27/08 08:07 AM
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Ulrika
Reged: 08/20/06
Posts: 581
Loc: Uppsala, Sweden
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Here's a short update on what's been going on in my life since I last posted here (which is probably a year ago or so).
I went through biofeedback treatment for my incontinence issues (due to IBS-D and my childhood paralysis condition) last fall but it didn't result in big enough improvements. To make a long story short I ended up having a laparascopic colostomy surgery in the beginning of October '08. I am very happy with the result. I feel so free and the IBS is much better too. In fact as far as "consistency" goes my BM are considered pretty much normal for someone with a colostomy. I have had less pain too. The area which used to cause the most pain problems before was my lower sigmoideum and rectum and since those parts of the bowels are detached now (still in place but disconnected from the rest of the GI system) they don't really cause any problems anymore. I recently had my first post surgery period and the pain associated with that cleared up much faster than before the surgery too. I don't need the loperamide anymore either.
However around the time of the surgery I developed upper digestive issues which got worse after the surgery. (They gave me Ibuprofen, not the best thing to do.) I ended up with a terrible heartburn and nausea even throwing up. Luckily I haven't really felt sick after I got home from the hospital, but I still have problems with heartburn and am on medicine for that.
The hospital stay was pretty much awful but I am glad I had it done.
Because of the paralysis condition I have a bladder dysfunction and before the surgery I used to push the urine out using my abdominal muscles but after the surgery that doesn't really seem to work that well plus you're supposed to be careful with things that increase the intra abdominal pressure, so now I need to do intermittent self catheterization. It's ok most of the time, but lately I've had some issues with the urethra getting irritated. I hope it will heal up well soon and not cause any more problems. Apart from that doing ISC is so much quicker and easier than having to sit for ages pushing and pushing to get the urine out.
I hope all the problems will settle down soon so I can really move on with my life. Of course you can't wait for things to be perfect (then you might end up waiting forever) but I want to feel that things are under control at least.
My fiancé and I have just started planning our wedding for some time in the late winter or early spring '09 and after that we plan to start trying for kids.
Since early 2008 I am no longer on the EFI. I keep experimenting to find the diet that is optimal for me.
Hope everyone is doing ok!
Hugs,
Ulrika 
P S A picture of me and my belly and new accessory (I like to call it my belly butt, or belly bottom  ) can be found here.
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Wow, you have had quite a year!!!! That sounds like an awful lot for one person to go through, but I am glad that you are happier and healthier as a result. Thanks for posting that picture - it was hard for me to picture what you really had done! Good luck with the wedding and babies and everything - our first baby girl is due any day now!!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Hi there!
That's so exciting! Bet you're starting to feel a bit nervous and impatient maybe? Good luck with everything. Good timing too. Looks like you'll have time to settle into your new daily routine in time for Xmas.
/Ulrika
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Hi Ulrika, I remember your posts from when I came onto this board. You have always struck me as a really strong person, given all the problems you have/had in the past. It's good to hear that your surgery went well. Excuse my ignorance but what exactly is a colostomy? Is it the colostomy bag?
Take care, and I wish you all the best!
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IBS-C, bloating, cramps
pregnant
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Hi there!
Thanks. Well, it's been a struggle. I do think I have coped pretty well considering what I've been through but believe me there have been many tears too.
Yes, when you have a colostomy surgery they split the colon in an upper and a lower part. The lowest part (in my case the lower sigmoideum and rectum I think) they just sew up the end of and leave it where it is. The end of the upper colon part they pull out through an incision in the abdominal wall, and then they turn the end inside out and sew it to the abdomen. Afterwards you need to wear a colostomy bag to collect the BM.
/Ulrika
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Hello Ulrika! Thank you for posting the pics and giving us the updates on having the colostomy surgery. I have thought of going this route, as my IBS-D has stayed very painful and I have developed autonomic dysreflexia with my attacks. It is so wonderful you have found a great partner to look past the ostomy, but of course your winning sense of humor and intelligence and beauty are definitely going for you as well!
Best,
~nelly~
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For any one who's interested there's a great aticle about living with a colostomy at http://www.dailymail.co.uk/health/article-552233/Agony-aunt-Virgina-Ironside-says-colostomy-bag-stopped-living-life-full.html
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Stable IBS D
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Quote:
It is so wonderful you have found a great partner to look past the ostomy, but of course your winning sense of humor and intelligence and beauty are definitely going for you as well!
Hahaha, thanks Nelly! Yeah, I am pretty fortunate to have such a great fiancé. He just wants me to feel as good as possible and be well so he has supported me every step of the way, through every nasty test (like lower and upper endoscopy), diet experiment and treatment. Lately he has also started to surprise me with gifts out of the blue every now and then. So when it comes to my relationship I am a lucky girl.
If you have any questions about surgery et.c. feel free to email me. My address is in my profile.
/Ulrika
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In my case I did opt for the colostomy. Of course had I been well I wouldn't have but I wasn't. Many people think that having an ostomy would be the end of the world. For many people the psychological aspects of having one are the biggest problem. For many people it can also come as a shock. They may have an illness that will literally kill them if they don't have surgery and they may find out they are going to get an ostomy very suddenly.
In my case I had done research for years. It usually also takes a long time before you get to the point where surgery is offered. Here at least the wait for surgery and other procedures can be pretty long and they always want you to have tried less invasive treatments first. My IBS was controlled pretty well most of the time with loperamide and my watching what I ate and I had done supplements and hypnotherapy et.c. so there wasn't really anything else to try for the IBS. When it came to the nerve damages I have and the resulting weakened sphincter control I underwent biofeedback training first. When that didn't help enough I was offered a procedure where they put in a pacemaker that stimulates the nerves in the sacrum but the wait for that was really long and neither the surgeon nor I believed it would work well enough in my case. So then I decided to go for the colostomy. By that time I had sort of seriously wanted the colostomy for about a year or so. From the time I started the testing at the surgery department to the time I had the colostomy surgery there was a time period of two years. So I certainly had time to think it through.
I have no psychological issues with the colostomy at all. I don't feel less attractive or anything. For me it certainly hasn't been the end of the world. More like the beginning.  It is such a relief not to have to worry about BM when you're out and about.
/Ulrika
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I just thought I should point out here that having a colostomy doesn't magically cure you from IBS. The main reason why I had this procedure done was the incontinence issues related to the combination of IBS-D and my previous paralysis condition. However it just happened that my most problematic area when it came to IBS was probably the lowest parts of the colon along with the rectum. This area was also the part that caused the most pain which happened when stool passed through that area. Since no stool has to pass through there anymore and the rectum doesn't need to store stool anymore it seems most of my IBS issues are gone.
I just wanted to say this specifically so that no one misunderstands and thinks that ostomy surgery will in general cure IBS. It certainly hasn't cured it for me either. I believe my digestive system is still oversensitive. I just happens that what used to be my biggest IBS problems/symptoms seems to have cleared up because of the reason I explained above.
So colostomy surgery would mainly be considered if you have severe IBS-D and/or incontinence problems and have failed to respond well enough to less invasive treatment after giving it a serious try.
/Ulrika
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