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Posted 1/31/2010 9:30 PM (GMT 0)

Hi Everyone,

I actually found a Facebook group called "No Colon and Still Rollin." :-)

I wanted to share my story with all of you that are suffering with UC.

At 49, I was diagnosed with UC. It literally happened overnight. I had never even had a sensitive stomach until Jan. 30 2009 when I ate something...got the runs...and my life was not the same after that.

I was admitted to the hospital in March 2009 for 10 days, April 2009 for 2 weeks. I was on prednisone. The Drs wanted me to take 6MP and Imuran but I refused to take more meds. I am giving you a brief version of my story but I did feel better in June and July without any meds but I flared again in August. I bled a lot and my hemoglobin dropped to 7. I was put on prednisone again.

I really admire all of you that somehow have the patience and endurance to take meds for years but I just could not accept it.  Also, I was stunned by how much hair loss I suffered, being on prednisone (and being anemic).  I had long, gorgeous, thick hair, and now I'm left with nothing compared to what I had. Fortunately, my hair is growing back because I am no longer on meds.

On Dec. 10, I had surgery with Gustavo Plasencia, MD in Miami, FL.  I am thrilled.  He removed my colon and connected my small intestine directly to my rectum. I do have a mild case of UC in me rectum but, overall, it was in good shape, and he felt it was a better option for me than the j-pouch surgery, as I would have more control.  I have no scarring. What you can see is one tiny insicion.  He did laproscopic surgery and actually did me the favor of removing my colon through my "behind" so I would have one less scar. At the gym, I do show my abs and no one would ever know I just had my colon removed about 2 months ago.

Also, I was back at work full time by Dec. 28. I've been going to the gym and getting my life back. I do have more frequent BMs than before I ever had UC, but I'm fine with it. It is also more watery. Again, no biggie. The important thing is I feel great, as I am not taking any medication.

You can live without your colon! I'm blessed to have found Dr. Plasencia because he gave me this option vs. the j-pouch 2 step procedure.

I just felt the need to let all of you know my story in hopes that someone can benefit.

God Bless and good luck!

Viv

Posted 1/31/2010 10:11 PM (GMT 0)

Wow, you had UC and your surgeon left your rectum?  That's very unusual and not standard OP for UC.  I have met one other who opted for this and ended up having to have the rectum removed 8 years later due to unrelenting UC in the rectum.  I hope you are able to manage the disease in the rectum when you experience flares; if not you might be back in the OR!

Sue 

Posted 1/31/2010 10:53 PM (GMT 0)

Thanks Sue.

As for what you shared...anything can happen and I could also be hit by a car tomorrow and die.

I was willing to have the J-pouch surgery. It was the Dr that thought that, in my case, keeping my rectum was the best option b/c it was intact. For him to conclude this, it is also based upon his experience with many other patients and their success stories. Both of my brothers are MDs and friends with this Dr, and I had no doubt he would choose the best route for me.

I do have to have annual check ups but I would need those anyhow even with a colon. Right? If I would ultimately lose my rectum, I would deal with that if and when it should happen.

Overall, I'm not worried and enjoying my freedom! Meds were simply not an option for me.

I was diagnosed with UC in Feb 2009 and by the August flare, I was determined to have surgery.

I'm happy I made that decision.

All the Best,

Viv

Posted 2/1/2010 12:53 AM (GMT 0)
Vivita - actually I think you are very brave choosing what you wanted. 

I would have to be dying literally to have surgery so shows how different we are.  I don't mind taking tons of medication as long as something works!

Good luck in the future!

ElaineNY

Posted 2/1/2010 1:14 AM (GMT 0)
Thanks ElaineNY. Good luck to you too!

I know people, in general, seem to fear surgery until they are desparate and that is also one of the reasons that motivated me to post on this forum.

At 49, I wasn't getting any younger. UC was not going away. As I age, it would only get worse. I just felt that the healing process would be much easier now...vs. being in my 60s or 70s.

In fact, I had the surgery on Dec. 10 and Dec. 11 was my 50th birthday. When most people are going to great family celebrations on their 50th birthday, I woke up in a hospital without a colon...lol. I was happy b/c I saw it as a new beginning for me.

So far...so good. I feel like myself again except for the fact that I do have more BMs than before UC which were totally normal. After UC, I went to the bathroom up to 18 times in one day so I do know the pain of UC.

Take care,
Viv
Posted 2/1/2010 7:25 AM (GMT 0)
Vivita--

How many bowel movements a day do you have now compared to before?  And I take it that you no longer have urgency?

That sounds like an attractive option compared to j-pouch.  How long were you in the hospital for recovery and how soon were you able to go back to work?

CollegeGrad85

dx with UC 11/2008

10 mg Prednisone daily, probiotic

2-3 bowel movements a day, no blood

Close to Remission

Posted 2/1/2010 3:05 PM (GMT 0)
Viv- congratulations- I am so happy for you.  I have "almost" done the jpouch for years now but always chicken out of the irreversibility of it all, but I am currently flaring again and "90% expect" to finally get it done in the next month or two (am pre-cleared  to do it at short-notice, after a surgical consult)- but did I miss something in your post?  You said that you did NOT get a j-pouch but that your small intestine is connected directly to the rectum?  Did you get some other sort of pouch?  I assume you have a reservoir for the semi-formed stool to collect.  Anyway, I am very happy for you as it sounds like you are now getting your life back. 
Posted 2/1/2010 3:52 PM (GMT 0)
Hi CollegeGrad and Probiotic,

Thanks!

I have about 6 to 8 BMs a day at this point. It may sound like a lot but it does not bother me. As someone said once on this website, she basically goes when she urinates. I understand that will improve in time but, even if it doesn't, I'm still okay with it. "Before" was when I did not have UC which was once a day. With UC, many times and painful with blood.

Probiotic, Yes...you understood correctly. I do not have a pouch. My small intestine is connected directly to my rectum. (For this surgery, your rectum has to be in good shape.) I was in the hospital 4 days. I had surgery Dec. 10 and I went to work on Dec. 23 for a few hours but actually back at work full-time on Dec. 28. Also, I did attend the Holiday events and was able to enjoy the food.

Regarding urgency... perhaps at times there is but I can control it and there is no pain.

This is how I feel after almost 2 months.

All the Best,
Viv
Posted 2/1/2010 8:14 PM (GMT 0)

Vivita said...

I was willing to have the J-pouch surgery. It was the Dr that thought that, in my case, keeping my rectum was the best option b/c it was intact. For him to conclude this, it is also based upon his experience with many other patients and their success stories.

Hi Viv,

There could be more options available--in your case keeping your rectum--if you have surgery before waiting too long. Thanks for sharing.
Posted 2/1/2010 8:21 PM (GMT 0)
Viv,

So glad to read your story, and I love the title of your post. :) That's great you are feeling so well and already in the gym working out. You must feel so much more in control of your life.
Posted 2/1/2010 8:34 PM (GMT 0)
Incredible, in the gym after a mere two months...wow! I am very happy for you. :-)
Posted 2/1/2010 8:46 PM (GMT 0)
Thanks. It is really amazing and, as I shared, the scar that is visible is tiny.  I'm 50 but I have not had kids and I've always been into being fit so I asked the Dr to do his best and he did!

Thanks again.

Viv

 

Posted 2/1/2010 9:05 PM (GMT 0)
Thanks subdued and Sara...and yes, Sara, I do feel more in control of my life. I don't have this fear hanging over me as I had before of...am I going to get a flare and feeling so tired and drained everyday? After last August 2008 when I bled a lot, my hemoglobin was 7 and did not get higher than 7.2 by Dec. I had to have a blood transfusion the week before surgery. That took about 6 hours.

Trust me...I may have not had UC for years and years as so many here, but I know what it is. I just don't feel that fear of what's going to happen to me anymore... or thinking I can't go on a date b/c I'm afraid I will have pain or need to run to the bathroom...or I can't drive long distances on the highway, b/c, again, I may need a bathroom instantly. I would take Tylenol with codeine to get me through those moments. I found it to be very helpful and my "security blanket." Now, I don't carry that burden and I'm just enthusiastic and can't wait to get my hair back and some lean muscle again.

I am also sharing my story because, when I did my research, I never even knew that what I had done was an option. I thought a j-pouch was my only choice. I would have gone through with it, but I'm glad I had another option which btw...did not require that external bag for 3 months. I've had one surgery and that is it. If something changes down the road, I will deal with it then.

For now, I'm at peace.

God Bless,
Viv
Posted 2/2/2010 9:54 AM (GMT 0)
Wow... I wish I could say my surgery went as well as yours did. You must be soo grateful.

I was diagnosed with ulcerative colitis at the age of 14.. 2 months later i had my whole colon removed, not by choice but because it was falling apart because it was soo imflammed. they thought it was chrones for sure because I had all the signs. Before my surgery they did a colonoscopy and the doctor said he had never seen such an inflammed colon in someone as young as me. I went for about 2 months on prednisone which did nothing for me and was also NPO while i was being fed through IV for nutrition.. It was the worst time of my life.. I weighed next to nothing. They then sat me down and were very blunt with me and basically said you need surgery or your body is going to give up because of all the blood loss and lack of nutrition. So surgery it was.. I wasnt as lucky as you i had the full out operation and i have 4 scars now from it; one of them which opened and now is huge. I had the ostomy for a year after the colon removal surgery but was lucky enough to have it reversed. in that year i had over 6 surgeries from blockages and scar tissues not to mention suffered from every other complication possible. I woke up in the night one night in the hospital barely being able to breath and i was on oxygen for hours and thats when they told me i had a pulminary embolism.. most likely from lying in bed so much after surgeries. I also developped pneumonia, and after one of my surgeries found out i had a collapsed lung because they knicked it with the central line during surgery so i had a chest tube put in. After all that was said and done i slowly gained my weight back and was feeling better with my bowels working as well as they possibly could all the way up until i was 18. My surgeon always told me she would fix my scars so she attempted it but it failed; my stomach couldn't handle it and it actually stretched out my scar even more. I was so excited for that surgery that I think it really hit me when it couldnt be fixed. Since that time ive been battling depression and have trouble keeping weight on. its hard for me to cope with and im still having troubles believing in myself. and if you asked anyone before this all happened i was the most confident girl going and played every sport. now not a day goes by where im not crying. i stay strong through my friends and family. i was recently diagnosed now with arthritis in my si joints which i was told was because of my IBD. im 19 now and still have trouble coping even without an ostomy but because of my arthritis i cant work my 2 jobs and am having trouble making it to my college classes. I wish i could be stronger but i just feel so down even though i know i have a lot going for me.
Posted 2/2/2010 12:57 PM (GMT 0)
Oh wow, can't believe all you've been through and at such a young age. My heart goes out to you. Have you got a second opinion from another doctor? I found out that not all doctors are created equal after I had a botched vaginal delivery with my first son. If you haven't gotten a second opinion I would definitely get one and perhaps a consult with a good plastic surgeon.
Posted 2/2/2010 1:59 PM (GMT 0)

T17,

I am so sorry to hear of your ordeal. After I got UC, I learned that many people get it very young. My sister-in-law's nephew was diagnosed last year at age 16.  I can't even imagine all that you've been through and I thought what I was going through was bad.

I also understand about losing confidence, as I did as well...losing my hair and just feeling so weak, as I wondered if I would ever be myself again.

I will pray for you and hope that things improve.

God Bless,

Viv

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