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Crohn's Disease Forum » Surgery » Can they just take part of the large intestine?


10-25-2011, 12:18 AM   #1
sunflower
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Can they just take part of the large intestine?

I am pretty sure I am facing my first resection. Yippee!! I have a stricture about 10 cm in from my rectum. I would really like all of that area removed. It has hurt for years, and I have begged the doctors to take it out for a long time. They keep saying it will come back. But, I am hoping it will take years to make it hurt as bad as it does! The area is very near the rectum and they wanted to take it out a couple of years ago, but the surgeon didn' want to isnce it is close to the rectum.

What are the complications with resecting near the rectum? How long will it take to recover? I am scared to death, but I want it over and out of there already! I have had Crohn's pain since about 1981 in this one spot. And not too far away is the stricture that I have had for several years that the doctor has finally found! This doc is a keeper as he really listens but I fear he will retire in a few years.

I just don't know what to expect from this. And a friend asked if I would have the hysterectomy and repair of the cystocele and rectocele at the same time! I don't know if I could line up that many surgeons at once!! LOL!! But it would be good to get it all done at once. Just not sure if the old body would got through all that! What do you guys think?
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10-25-2011, 12:59 AM   #2
tiloah
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I don't know the answers to any of your questions... but I would think opening you up once would be preferable.

I hope whatever they end up doing you have a good outcome and find some relief. You'll be in my thoughts. Good luck.
10-25-2011, 04:31 AM   #3
rygon
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My crohns is about 4cm in and iv been told that they will have to take the whole large intestine out, then rework the small intestine into a j pouch (not sure how that goes)
10-25-2011, 09:00 PM   #4
sunflower
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Well, it is a lot of questions!!! LOL!! I don't know why I wrote all of that. But, it was on my mind. I will just have to wait and see what happens. A J pouch isn't the worst thing to happen, from what I have read! Just a lot to wrap my brain around, you know?
10-26-2011, 07:44 PM   #5
xJillx
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Is a J-Pouch an option for those with Crohn's? I didn't think it was. I thought a J-Pouch could only be used for those with UC.
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Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
10-26-2011, 10:51 PM   #6
sunflower
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Well, gosh. Now I don't know! I guess I need to do some more research.....
10-27-2011, 03:13 PM   #7
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I asked a lot of those questions at my surgery consult yesterday... I was diagnosed 14 years ago with CD and in remission for the last 7 years. I am now facing resection of my sigmoid colon. The surgeon gave me good odds based on my CT scan of being able to just put it back together. I wouldn't even have it done except they have to go in and repair a fistula that is going to my bladder and the whole part it is coming out of is strictured (if that is a word) they feel it would be best in the overall healing process if they took out the diseased part. They are doing laparascopic-assisted surgery. They expect I will be hospitalized for 3-7 days. They say I only have about a 10% chance of needing a temporary colostomy (to allow the suture to heal) which was something I was worried about. I wouldn't be doing any of this if there was another option but they are afraid of repeated bladder infection and for the infection to become systemic.

I would just suggest you have a surgery consult to answer your questions as they pertain to your specific case.
10-27-2011, 05:01 PM   #8
Nyx
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All of my crohn's is in the lower third of my colon, out to my rectum and anus. They took out 1/3 of my colon and I now have a permanent colostomy. It was the best thing that I've ever done. I can't stress that enough. For those of you dealing with crohn's that low down in your system you know how painful it is to just try and go to the bathroom! I don't miss that one bit. Don't get me wrong, wrapping my head around having a bag for the rest of life was hard, but now that I have it, it's normal. And I'm pain and constipation free...I'm also currently med free.

So, to answer your question..I don't think they can remove too much colon close to your rectum without giving you a bag, especially if your anus is diseased as well.

Also, in regards to the J pouch...only people with UC are eligible for that.

Hope this helped....good luck to you!!!
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"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

10-28-2011, 03:58 AM   #9
sunflower
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The way I understand it, my rectum is not diseased, nor is my anus (though I have GIANT hemorrhoids on the outside!) It was the proximity to the rectum that bothered the surgeon I consulted a couple of years ago. Perhaps a specialized surgeon would not be as intimidated. You are right sararay, I need to hold my quesions for my surgeon - but sometimes it is hard to wait!!

And, yes I will NOT miss the pain of trying to go to the bathroom. Or even just fart, as sometimes that is too painful to want to do!
10-28-2011, 09:32 AM   #10
sararay
 
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I didn't really mean you should not ask if you are worried about something. Only that everyone's case is different and with the combination of issues you wanted to address I wouldn't want you to get wrong information on here. Sometimes that can be more scary than what the surgeon has to say.

When I was told I needed surgery by my gastro, the first thing she said was there was a chance I might need a temporary colostomy and I just wasn't prepared to hear that yet. I got all stressed out in the 5 days before my surgery consult. The surgeon didn't even mention it as a possibility and when I asked him he said that I only have a 10% chance of needing one and only if something goes wrong. He says he doesn't see any reason why that would be necessary. So basically I stressed out for nothing...
10-28-2011, 11:04 AM   #11
silvermist
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To sunflower, I have an 8 cm in my small intestines. I asked my doctor if surgery was better. He said no. It will only come back. So if removal of your large intestine to releave pain. I would first have the hemorrhoids removed. But as my dotor said if any removal of the intestines is made your only causing yourself more trouble. Instead of being healthy, you just won't be. You'll have more flares, lose of weight, more time in the hospital. So what do you want to do. I said, I'll live with it and not have the surgeries. PS Only four years crohns. Silvermist.
10-28-2011, 10:39 PM   #12
sunflower
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Sararay, I understood what you meant. No harm done. I know I am imagining all kinds of scenarios without even having been there yet. Insomnia does that, and so does the fear of the unknown!! I just have so many issues to address that it gets overwhelming. It would be wonderful to do everything at the same time and just suffer a lot for a little while!!

Silvermist - that is the advice I have been getting for years. And I do know there is a risk of the disease coming back, so I have been avoiding surgery all these years. In fact, I am rather proud that I still have all my guts, except my appendix!! LOL!!

However, my intestine is so badly scarred that there is little left that resembles real bowel. The path reports always say that the polyps are the only normal tissue in the biopsies. So, not only do I have a stricture, but I also have several centimeters of non-functioning tissue that makes it hard to evacuate. My stool makes it so far and then just stops. It backs up and backs up until it builds up enough pressure to push on through. Plus, I have never not been in pain in that area since about 1978. That is a long time to hurt in one spot. My disease has been fairly stable, just affecting the same places over and over again.

The reason I was wondering about removing only part of the colon, is to maybe help prevent it from spreading to my small inestine. If there is still large bowel left, my hope is that the disease - if and probably when it spreads - will stay in the colon. Who knows with this thing, though??

Sometimes with surgery, you can get several years of relief. Sometimes it will make things worse. It is a gamble. But, my "spot" as I call it has become such a part of my life that when I sleep, I always hold my pj's and undies off that area with my hand to keep the pressure off that spot. It is weird, because I do it in my sleep and don't even realize I am doing it until I wake up. I am so used to being in pain there that I don't even know it hurts sometimes.
10-28-2011, 10:52 PM   #13
silvermist
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I'm sorry. I wish that there was no such thing as diseases. I feel for you. I've not only have crohns, but in my early 30's, I'm 56 now. I had cancer. I fought and won that. I guess I was prone to have one more disease, just to see if I could handle that too. I don't know if your with god or not. But I pray that everything goes well with you. Silver.
10-29-2011, 08:44 AM   #14
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I had 4 resections and still have some bowl left. Usally when you have one resection you will have a second. Crohns has a way of showing up at the point where the bowel is joined causing the second operation. I wish you all the luck in the world.
10-29-2011, 01:01 PM   #15
silvermist
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So far my doctor has said no to any kind of removal. I and he has said that I'm doing better without any kind of removal. I don't hurt as much as I use too. I fall out of remission every now and again. But more in remission. Which I'm thankful for. I hated getting sick with the vomiting, because of my sezures. I never knew if I would break something or wind up with a black eye or bloody nose. I started having sezures when I was carrying my second son, and it's progessed more as the older I get. Lord I'm just a mess. I don't like to crow about myself and there is more to me than crohns. It would take more than just talking to you or somebody else about the wrongs. But I'm glad for a good listener. Take care. Silvermist
10-29-2011, 11:29 PM   #16
sunflower
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Thank you!

I am glad you are doing better without any removal. I do think that is the way to go as long as possible. I am sorry to learn about your cancer and your seizures. I am glad you beat cancer! I wish there was a way to beat this - but there is not, so we take each day at a time. I understand how you feel, though our ailments are different. I don't like to say much about myself either, and try to hide the way I feel most of the time. But it is good to come here and let it out sometimes!

And you are right! There is so much more to us than just our stupid disease. Threre are just days that it takes up most of our thoughts and time.
10-30-2011, 10:47 AM   #17
silvermist
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I agree with you there. Not having someone around that truly don't know what your going thru is hard enough. But when you've got a place to go to and be able to vent your hurts and your anger. I don't blame anyone for this. Believe or not I'm the only one in my whole family, past and present. That has crohns. Cancer runs high and so does heart attacks and failure. But not crohns. Do you think I'm special, not on your life. I also lost someone very close to me, My boyfriend of 15 yrs. He couldn't handle the fact that I was sick. And that I couldn't or should I say wouldn't get well. I still love him, but learning to be on my own. Right at this moment. I prefer friends, close friends that know what I'm going thru.And don't judge me because of what I've got. I do want to thank you for your time with me. Silvermist
11-02-2011, 12:03 AM   #18
sunflower
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I am sorry he did that to you. Many people don't understand that sick people are people too. We have good days, and days when we are almost our old selves. No reason to run, but it sounds lke he needed to and am sorry that he will miss out on a great life with you!

Have they discussed ablation for your seizures? I think t is kind of new, and sounds scary, but if they could pinpoint your seizures and stop them, that would be wonderful. Seizures are no fun. Are they brought on by vomiting?

I am the only person in my family that I know of. I am negative for the gene, too. My cousin ended up with toxic megacolon and had to have his colon removed immediately or he was going to die. They diagnosed him with UC, but ow thinking CD because he keeps having problems. I haven't talked to him for a while. I need to get in touch.

I feel guilty about my family because they didn't sign on for this. I didn't know I had this when we got married, but I did know when we had a child. She now has auto immune and auto inflammatory diseases on both sides, so we watch her closely. RA runs on my husband's side with both his mom and grandma. He had a cousin with Lupus. Just me and Bob in my family, except some weird blood diseases that no one has many details on those, so not sure what they are. Sure is fun being "first" in he family, isn't it? LOL!!
11-02-2011, 01:49 AM   #19
sararay
 
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When I feel bad because I think about how I don't want to put my family through this and then also not wanting to pass it on to my children, my husband says "you are not any less of a blessing to us because you have a chronic illness and if our daughter gets this it doesn't mean her life or her presence in our lives is any less of a blessing". It made me cry the first time he said it.

My husband grew up with a mom who has Lupus. I have been with him for seven years, married for five and this is the first time he has seen me in a flare-up. My crohns has been in remission since before we met. This has been hard but I feel it has brought us together.

Silvermist: I was with my ex-boyfriend for five years and he was with me through my diagnosis. He was supportive at first but then he would be controlling and critical whenever I struggled sticking to my anti-inflammatory diet. He seemed to get mad at me whenever I had a flare-up and have problems controlling his temper. It made me realize that he didn't love me, but it wasn't because of the disease. That was just a symptom. It showed me how controlling and judgmental he was. I'm glad we broke up because then I was available to meet my husband and love of my life. Everyone will have to face their imperfections one day. Even your ex might have to fight cancer or something else one day and he might find himself alone. I hope you find a life partner that will stick by you through thick and thin.
11-02-2011, 09:26 AM   #20
silvermist
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Thank you both. I'm wanting friends with my same kind of problems. My family is there but sometimes I get negative talk from them about my ex. He has a virus in his blood, but the only thing that happens to him is you can't touch him. I'm one of those people who take care of others despite my own problems. But now that the tables had turned, I'm having to take care of myself. I'm not on anything for my seizures, they don't come around very often, but when they do it's horrible. I've had bumps on my head and my brain has to upload to what happened. And usually I have to clean up the mess. So far no one wants any thing to do with me. Men wise. Crohns to them is a scary thing. So in the mean time I spend my life taking care of myself, and for right now enjoying the freedom of being able to do what I want. It's like I told my mom, if I want to lay around all day in my pj's, or go to bed when I want to then thats what I'm going to do. What scaries me is going blind. I guess I'll handle that when the time comes. So thank you both. Here's to your health. Silvermist
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