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Ulcerative Colitis
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Posted 1/7/2016 9:08 PM (GMT 0)
hey all. hope you're all well. so basically nothing works for me from ASA to remicade to entyvio... surgery at this point seems likely. my whole colon is inflamed and the worst parts are the left side and rectum. reversal seems unlikely if i get surgery due to how destroyed my rectum is. I'm terrified... I'm in my 20s and have anxiety and i have so many questions....

I'm scared i won't wake up from surgery. it's such a huge surgery.

I'm also concerned about my intestines. what happens if my small intestine gives me trouble once my large is gone? is that a death sentence?

and what happens if the surgery doesn't help! !!

I'm basically scared that this surgery will leave me vulnerable and worse off than with my horrible colon&rectum. i know this might sound immature and far fetched but my God I'm terrified and i feel i can talk to you all better than a dr because you all know what this disease is like. any other info / experiences on the surgery would be wonderful

this disease sucks.

thank you ♡
Posted 1/7/2016 9:17 PM (GMT 0)
Can you give a little more info? Most people with UC have terrible disease in their rectum. My rectum was absolutely, horribly diseased and I was able to have a j pouch. The rectum is completely removed. Have you had a surgery consult?
Posted 1/7/2016 9:20 PM (GMT 0)
It's normal to feel anxiety about a big surgery and VERY normal to feel anxiety about UC -- put them together and you've got a totally stressful nervewracking situation. I've definitely been there. I wrote a blog about the experience from beginning (not knowing I would have surgery) to "end" (I don't really post in the blog anymore because UC doesn't affect my daily life anymore) but if you want to read one account of what it was like to have surgery for someone in their 20s it's there, the link is in my signature (I recommend scrolling back to start at the beginning). Good luck!
Posted 1/7/2016 9:23 PM (GMT 0)
First of all, sorry that you are going through this it stinks, it really does

correct me if I am wrong but it seems like you dont feel comfortable discussing this with your GI
this is not good you need to have a good relationship with your doctor and be able to discuss things, especially when you have big concerns

you can ask them to confirm that you dont have Crohns disease, if you have UC your small intestine will not be affected after a colectomy.

surgery is a scary thing, but the mortality rates are very very low especially when it is elective surgery versus emergency surgery.

make sure to chose a very good colorectal surgeon, one who has performed many operations and practices out of a good hospital.
I do not know your geographical location so I cannot make recommendations but from what I hear Cleveland Clinic is supposed to be one of the best places do have your colon removed.

If I need my colon removed I may choose to go there (although there are very good colorectal surgeons much closer to my home)

It also seems like you have a bit of anxiety which is very understandable, ask your GI or PCP to make a recommendation for a therapist

IBD is scary and it gives many of us anxiety, it is normal and nothing to be ashamed about

good luck
Posted 1/7/2016 9:24 PM (GMT 0)
Why wouldn't a reversal be possible? They remove the rectum so it doesn't really matter how damaged it is. Mine was in a terrible shape.

It sounds like you should talk to experienced colorectal surgeons about your options and go over these types of questions with them. Also posting on the ostomy board may yield some results as well.

I completed the final step (2 of 2) of j-pouch surgery a little over a month ago and am doing great. I have about 4-5 non-urgent BM's a day, I sleep through the night, no pain. I went on a 9 mile hike on new years day and did not need to use the restroom once over a 6 hour period. I'm also completely off meds. Now able to eat nuts, seeds, popcorn, salads, whatever.

Good luck with your decision. The surgeries are a difficult process but can be a blessing, especially if you have exhausted all other medical options. I'm thrilled to have my life back.
Posted 1/7/2016 9:31 PM (GMT 0)
thanks for all the replies. I'm so glad that many of you are doing well. my gastro told me the surgeon needs rectum to create the jpouch... if that isn't the case I'm ecstatic. I'm meeting with a surgeon soon. i want a normal life so badly.
Posted 1/7/2016 9:36 PM (GMT 0)
Hey there, I'm 16 and I finished my last step of surgery more than a month ago. I had a two-step labroscopic surgery performed in order to prevent scar tissue from forming. There's nothing to be afraid of, I had a hemoglobin of 4 going into surgery, and now I have around 12-13. In the beginning, its a hard lifestyle to adapt to, but you'll get used to it.
Posted 1/7/2016 9:39 PM (GMT 0)

honeybee11 said...
thanks for all the replies. I'm so glad that many of you are doing well. my gastro told me the surgeon needs rectum to create the jpouch... if that isn't the case I'm ecstatic. I'm meeting with a surgeon soon. i want a normal life so badly.

No, the rectum is removed when they create the j pouch. Not sure why your GI said that or perhaps you misunderstood. They only need a small amount of rectal cuff (like 2 cm) to attach the j pouch to. As I stated earlier, I had terrible rectum involvement and I haven't had any issues with my j pouch. You'll get the facts when you meet the colorectal surgeon. Best of luck...I love my j pouch!
Posted 1/8/2016 1:26 AM (GMT 0)
I think you will feel better after you speak with a colorectal surgeon. I had a lot of fears, and I have terrible luck, and I managed to get through each step of 3 step surgery with pretty easy recoveries. I am so thankful I did it and it's over. I go a lot more than I did with a working colon, but I was at the point where I haven't had a "working colon" in years. I was spending way too much time in the bathroom. Now I go when I pee and it takes a few seconds. It's more of an emptying than having a BM - you don't sit and wait, you just push ad done. You choose when, and you can wait if needed. My current situation is worlds better than I was with uncontrollable active UC. It's better than worrying about the future with UC. it's even better than being indebted to taking expensive powerful drugs for the rest of your life. I would prefer to have a normal, working colon and no IBD, but that's not the hand I was dealt...
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