Crohns and Colitis Exchange
This is a place for members with Crohn's Disease or Ulcerative Colitis to get ... more
considering resectioning surgery
OyWithThePoodlesAlready posted:
Hey everyone. I'm at a crossroads. My big issue right now is just exhaustion but over the years I've gotten these pains and they're just getting worse each time. This last time they didn't go away and I went to the ER and they admitted me for 5 days for a (partial?) blockage. This was the week after remicade, not cool. I'm nearly 35 and I'd like to have a kid but am not in terrific shape. While I was in the hospital, one of the on call drs from the gi practice I was with suggested I go to a IBD specific GI that he knew. It took 3 weeks, but I finally had my apt with him yesterday. The 2 options he suggested were trying 10 mg/kg (I was at 5) for 2 doses and if I had any symptoms, to look at surgery, or the second option was just start looking at surgery. He said his concern is there is probably a decent amount of scar tissue. My instinct is that is the case, mostly bc it just keeps getting worse. I'm normally a very conservative person w medicine but I'm much more interested in what is the best chance in terms of having a healthy pregnancy.
My current thought right now is to go down the surgery route bc I'm afraid that if we do the medicine route and even if it appears that I'm doing ok and I get pregnant that I'll end up with a blockage while pregnant anyway. Best case scenario, I'd be on TPN which is bad enough but abdominal surgery while pregnant terrifies me. Especially since I've had blockage pain happen with no warning. Also, the GI thought there was a good chance I'd miscarried this past summer bc of the Crohn's and I'd rather not go through that again....
sooo, it scares the crap out of me but I guess I'm leaning towards surgery.
anyone have any thoughts or advice?
(and if it matters, the surgeon does laproscopic resectioning)
My current thought right now is to go down the surgery route bc I'm afraid that if we do the medicine route and even if it appears that I'm doing ok and I get pregnant that I'll end up with a blockage while pregnant anyway. Best case scenario, I'd be on TPN which is bad enough but abdominal surgery while pregnant terrifies me. Especially since I've had blockage pain happen with no warning. Also, the GI thought there was a good chance I'd miscarried this past summer bc of the Crohn's and I'd rather not go through that again....
sooo, it scares the crap out of me but I guess I'm leaning towards surgery.
anyone have any thoughts or advice?
(and if it matters, the surgeon does laproscopic resectioning)
23 Replies |Watch This Discussion | Report This| Share this:considering resectioning surgeryHey everyone. I'm at a crossroads. My big issue right now is just exhaustion but over the years I've gotten these pains and they're just getting worse each time. This last time they didn't go away and I went to the ER and they admitted me for 5 days for a (partial?) blockage. This was the week after remicade, not cool. I'm nearly 35 and I'd like to have a kid but am not in terrific shape. While I was in the hospital, one of the on call drs from the gi practice I was with suggested I go to a IBD specific GI that he knew. It took 3 weeks, but I finally had my apt with him yesterday. The 2 options he suggested were trying 10 mg/kg (I was at 5) for 2 doses and if I had any symptoms, to look at surgery, or the second option was just start looking at surgery. He said his concern is there is probably a decent amount of scar tissue. My instinct is that is the case, mostly bc it just keeps getting worse. I'm normally a very conservative person w medicine but I'm much more interested in what is the best chance in terms of having a healthy pregnancy.<br /><br />My current thought right now is to go down the surgery route bc I'm afraid that if we do the medicine route and even if it appears that I'm doing ok and I get pregnant that I'll end up with a blockage while pregnant anyway. Best case scenario, I'd be on TPN which is bad enough but abdominal surgery while pregnant terrifies me. Especially since I've had blockage pain happen with no warning. Also, the GI thought there was a good chance I'd miscarried this past summer bc of the Crohn's and I'd rather not go through that again....<br /><br />sooo, it scares the crap out of me but I guess I'm leaning towards surgery. <br /><br />anyone have any thoughts or advice? <br />(and if it matters, the surgeon does laproscopic resectioning)
HannahLeigh89 responded:
My vote is to go for the surgery. You don't want to be on a high dose of Remicade while pregnant anyway, and there's nothing to guarantee that your symptoms would go away even at the higher dose.
Report This| Share this:considering resectioning surgeryMy vote is to go for the surgery. You don't want to be on a high dose of Remicade while pregnant anyway, and there's nothing to guarantee that your symptoms would go away even at the higher dose.
OyWithThePoodlesAlready replied to HannahLeigh89's response:
thanks Hannah, that really helps knowing everything you've gone through. My biggest hesitation/pause/worry at this point is having to deal with diarrhea afterwards. I know its stupid, I have crohn's what do I expect? and the constipation is no picnic either. I guess my plan at this point is to say to the dr that if the test look like it inevitable that I'll need surgery then lets just do it. It'll be a hard call if it comes back unclear, but I guess I'll deal with that then.
I am scheduled to get the higher dose on tuesday just to try to keep me going until we do something. He did say sometimes he'll let people go w/o meds after surgery and scope them freq to watch for biopsy indications of disease return but my hands have been getting stiff and he's concerned that if I did that my joints could get worse
I would love to not dose a baby but as he says, there's no indication they are harmed...
anyway, thanks. Hope things are good with you
I am scheduled to get the higher dose on tuesday just to try to keep me going until we do something. He did say sometimes he'll let people go w/o meds after surgery and scope them freq to watch for biopsy indications of disease return but my hands have been getting stiff and he's concerned that if I did that my joints could get worse
I would love to not dose a baby but as he says, there's no indication they are harmed... anyway, thanks. Hope things are good with you
Report This| Share this:considering resectioning surgerythanks Hannah, that really helps knowing everything you've gone through. My biggest hesitation/pause/worry at this point is having to deal with diarrhea afterwards. I know its stupid, I have crohn's what do I expect? and the constipation is no picnic either. I guess my plan at this point is to say to the dr that if the test look like it inevitable that I'll need surgery then lets just do it. It'll be a hard call if it comes back unclear, but I guess I'll deal with that then. <br /><br />I am scheduled to get the higher dose on tuesday just to try to keep me going until we do something. He did say sometimes he'll let people go w/o meds after surgery and scope them freq to watch for biopsy indications of disease return but my hands have been getting stiff and he's concerned that if I did that my joints could get worse <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> I would love to not dose a baby but as he says, there's no indication they are harmed... <br /><br />anyway, thanks. Hope things are good with you
HannahLeigh89 replied to OyWithThePoodlesAlready's response:
I was on the highest allowable dose of Remicade for my body weight for like two years with no results. I know it's a lot different for some people, but I'd hate for you to wait and wait and it not help you. And no, everything I've read said that it doesn't harm the baby, it just raises your risk for miscarriage.
And if it's just a resection, there may not be too much change in your bowel habits. It's more likely that it'll be looser since the scar tissue causing the blockage will be gone, but there's a good chance that you won't have diarrhea, and if you do, that it's manageable with medication or diet. I live off Imodium right now.
I'm not trying to sway you one way or the other, just letting you know what my experience with it has been.
And if it's just a resection, there may not be too much change in your bowel habits. It's more likely that it'll be looser since the scar tissue causing the blockage will be gone, but there's a good chance that you won't have diarrhea, and if you do, that it's manageable with medication or diet. I live off Imodium right now.
I'm not trying to sway you one way or the other, just letting you know what my experience with it has been.
Report This| Share this:considering resectioning surgeryI was on the highest allowable dose of Remicade for my body weight for like two years with no results. I know it's a lot different for some people, but I'd hate for you to wait and wait and it not help you. And no, everything I've read said that it doesn't harm the baby, it just raises your risk for miscarriage.<br /><br />And if it's just a resection, there may not be too much change in your bowel habits. It's more likely that it'll be looser since the scar tissue causing the blockage will be gone, but there's a good chance that you won't have diarrhea, and if you do, that it's manageable with medication or diet. I live off Imodium right now.<br /><br />I'm not trying to sway you one way or the other, just letting you know what my experience with it has been.
OyWithThePoodlesAlready replied to HannahLeigh89's response:
Yeah, the Dr was only going to wait 4 or 5 months for the remicade to do anything (basically 2 dose cycles) and if that didn't do it, then I'd have to wait the 5-6 months more to do the surgery and recovery before trying. That would put me right before my 36th bday...
I'm getting the highest dose on tuesday but my concerns still exist that I felt great right before the symptoms started in 2010, so what is the say I couldn't feel good now and still have problems.
I was actually just emailing the Dr so I really appreciate the feedback. I basically said that if the scans look like there is a good chance I'll need surgery at some point, lets just do it. it scares me but I think its probably the best bet at this point
I think the fear with the diarrhea is just the unknown but I'm sure I'll adapt what ever happens. I've certainly adapted to plenty over the years.
thanks again for writing, it really helps me come to peace with a decision to just talk it out with people
I'm getting the highest dose on tuesday but my concerns still exist that I felt great right before the symptoms started in 2010, so what is the say I couldn't feel good now and still have problems.
I was actually just emailing the Dr so I really appreciate the feedback. I basically said that if the scans look like there is a good chance I'll need surgery at some point, lets just do it. it scares me but I think its probably the best bet at this point
I think the fear with the diarrhea is just the unknown but I'm sure I'll adapt what ever happens. I've certainly adapted to plenty over the years.
thanks again for writing, it really helps me come to peace with a decision to just talk it out with people
Report This| Share this:considering resectioning surgeryYeah, the Dr was only going to wait 4 or 5 months for the remicade to do anything (basically 2 dose cycles) and if that didn't do it, then I'd have to wait the 5-6 months more to do the surgery and recovery before trying. That would put me right before my 36th bday...<br /><br />I'm getting the highest dose on tuesday but my concerns still exist that I felt great right before the symptoms started in 2010, so what is the say I couldn't feel good now and still have problems. <br /><br />I was actually just emailing the Dr so I really appreciate the feedback. I basically said that if the scans look like there is a good chance I'll need surgery at some point, lets just do it. it scares me but I think its probably the best bet at this point<br /><br />I think the fear with the diarrhea is just the unknown but I'm sure I'll adapt what ever happens. I've certainly adapted to plenty over the years.<br /><br />thanks again for writing, it really helps me come to peace with a decision to just talk it out with people
mindyj1971 responded:
I would have the surgery. If I had known that all of the meds I had taken were gonna do me absolutely no good, I would have had my proctocolectomy in that first year! I know that the docs try and try to save as much of your intestines as they can, especially when you are so young, but sometimes it is the only thing that gives you any relief.
I wish you the best of luck! Please keep us posted!
I've missed you guys!
Mindy
I wish you the best of luck! Please keep us posted!
I've missed you guys!
Mindy
Report This| Share this:considering resectioning surgeryI would have the surgery. If I had known that all of the meds I had taken were gonna do me absolutely no good, I would have had my proctocolectomy in that first year! I know that the docs try and try to save as much of your intestines as they can, especially when you are so young, but sometimes it is the only thing that gives you any relief.<br /><br />I wish you the best of luck! Please keep us posted!<br /><br />I've missed you guys!<br />Mindy
OyWithThePoodlesAlready replied to mindyj1971's response:
Hey Mindy, great to hear from you. I certainly will keep everyone posted.
I'm excited about this new Dr and everyone at the office, I hadn't been thrilled with the GI I was seeing previously. Who knows, maybe it'll even make the 5 days in the hospital worth it (since that's what got me the referral
)
hope life is good for you
I'm excited about this new Dr and everyone at the office, I hadn't been thrilled with the GI I was seeing previously. Who knows, maybe it'll even make the 5 days in the hospital worth it (since that's what got me the referral
)hope life is good for you
Report This| Share this:considering resectioning surgeryHey Mindy, great to hear from you. I certainly will keep everyone posted. <br />I'm excited about this new Dr and everyone at the office, I hadn't been thrilled with the GI I was seeing previously. Who knows, maybe it'll even make the 5 days in the hospital worth it (since that's what got me the referral <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> )<br /><br />hope life is good for you <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">
jodi2125 replied to OyWithThePoodlesAlready's response:
hi oy, sorry you are going through this but glad you havea doctor you like now. as Ive mentione, I had a resection when I was 14 weeks pregnant. I had a full obstruction at 13 weeks and was septic. CTs are out when preggo and the first mri didnt show it. abdominal surgery is quite scary pregnant. I was high risk and bedrest after that. I didnt react well to morphine so I recovered with nothing. It was horrible. Since I had the resection I have constant diarrhea. I take immodium daily and stil have it. I cant eat fruits, veggies, whole grain or basically anything healthy, lol. My obstruction was from scar tissue from my csection. My son is going to be 5 in june and Ive basically accepted that this will be the rest of my life. I have many
Report This| Share this:considering resectioning surgeryhi oy, sorry you are going through this but glad you havea doctor you like now. as Ive mentione, I had a resection when I was 14 weeks pregnant. I had a full obstruction at 13 weeks and was septic. CTs are out when preggo and the first mri didnt show it. abdominal surgery is quite scary pregnant. I was high risk and bedrest after that. I didnt react well to morphine so I recovered with nothing. It was horrible. Since I had the resection I have constant diarrhea. I take immodium daily and stil have it. I cant eat fruits, veggies, whole grain or basically anything healthy, lol. My obstruction was from scar tissue from my csection. My son is going to be 5 in june and Ive basically accepted that this will be the rest of my life. I have many
not sure how it posted, I was still typing. sorry..
I will say, recovery is harder pregnant and basically, my body couldnt heal because it was trying to take care of the baby. Im SO lucky that my son is perfect in every way I remember the worry when they couldnt locate body parts or heartbeat on u/s because of the healing and swelling. If they think surgery is warranted in teh future, I would really recommend doing it under the most optimal circumstances. Best of luck and hope you feel better.
jodi
I will say, recovery is harder pregnant and basically, my body couldnt heal because it was trying to take care of the baby. Im SO lucky that my son is perfect in every way
I remember the worry when they couldnt locate body parts or heartbeat on u/s because of the healing and swelling. If they think surgery is warranted in teh future, I would really recommend doing it under the most optimal circumstances. Best of luck and hope you feel better.jodi
Report This| Share this:considering resectioning surgerynot sure how it posted, I was still typing. sorry.. <br /> <br />I will say, recovery is harder pregnant and basically, my body couldnt heal because it was trying to take care of the baby. Im SO lucky that my son is perfect in every way <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> I remember the worry when they couldnt locate body parts or heartbeat on u/s because of the healing and swelling. If they think surgery is warranted in teh future, I would really recommend doing it under the most optimal circumstances. Best of luck and hope you feel better.<br /> <br />jodi
OyWithThePoodlesAlready replied to jodi2125's response:
oh wow Jodi, I'm so sorry you had to go through that. When I was in the hospital I kept thinking "I could have been 7 months pregnant" and it scared the crap out of me, so I was already thinking surgery, and about 1/2 the doc then suggested it (the others said "don't get surgery" - nice to have a consensus )
I do feel pretty good that both the GI and surgeon will check everything they can before going ahead which makes me feel so much better.
I am scared of the diarrhea but I try to keep reminding myself that I'm living on whey shakes and chicken w rice or pasta so its not like things are terrific now
thank you so much for sharing your story, I'm so glad both you and your son are ok!
)I do feel pretty good that both the GI and surgeon will check everything they can before going ahead which makes me feel so much better.
I am scared of the diarrhea but I try to keep reminding myself that I'm living on whey shakes and chicken w rice or pasta so its not like things are terrific now
thank you so much for sharing your story, I'm so glad both you and your son are ok!
Report This| Share this:considering resectioning surgeryoh wow Jodi, I'm so sorry you had to go through that. When I was in the hospital I kept thinking "I could have been 7 months pregnant" and it scared the crap out of me, so I was already thinking surgery, and about 1/2 the doc then suggested it (the others said "don't get surgery" - nice to have a consensus <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> )<br /><br />I do feel pretty good that both the GI and surgeon will check everything they can before going ahead which makes me feel so much better.<br /><br />I am scared of the diarrhea but I try to keep reminding myself that I'm living on whey shakes and chicken w rice or pasta so its not like things are terrific now<br /><br />thank you so much for sharing your story, I'm so glad both you and your son are ok!
HannahLeigh89 replied to jodi2125's response:
Jodi, when you say you still have diarrhea, do you just mean in the sense that your stools are loose or are they still very frequent?
Report This| Share this:considering resectioning surgeryJodi, when you say you still have diarrhea, do you just mean in the sense that your stools are loose or are they still very frequent?
jodi2125 replied to HannahLeigh89's response:
Hannah, my diarrhea is MUCH better then it was. With immodium I go about 6x a day. If I dont take 2 I go much much more. I also have reflux, chronic gastritis, b12 deficiency and anemia since the surgery. I had none of them prior. Up until about 2 yrs ago I had constant pain and ws taking about 6 immodium a day to get through. I eat low fiber, no fried, limited dairy, pretty boring actually. I am so grateful that it is as controlled as it is. I get nausous when I have to go now nad the reflux is worse when I take the immodium. At this point I am glad Im doing pretty good - I barely functioned for a while.
hope you are feeling well and nursing school is going good.
hope you are feeling well and nursing school is going good.
Report This| Share this:considering resectioning surgeryHannah, my diarrhea is MUCH better then it was. With immodium I go about 6x a day. If I dont take 2 I go much much more. I also have reflux, chronic gastritis, b12 deficiency and anemia since the surgery. I had none of them prior. Up until about 2 yrs ago I had constant pain and ws taking about 6 immodium a day to get through. I eat low fiber, no fried, limited dairy, pretty boring actually. I am so grateful that it is as controlled as it is. I get nausous when I have to go now nad the reflux is worse when I take the immodium. At this point I am glad Im doing pretty good - I barely functioned for a while. <br /> <br />hope you are feeling well and nursing school is going good.
oh, and yes, all loose and watery. Sometimes much worse then that.. I only get pains now usually when I have to go but it passes pretty quickly.
Report This| Share this:considering resectioning surgeryoh, and yes, all loose and watery. Sometimes much worse then that.. I only get pains now usually when I have to go but it passes pretty quickly.
HannahLeigh89 replied to jodi2125's response:
That sounds about like mine, but I have no colon whatsoever. How much did they remove with your surgery? And also, now that I've healed from surgery, I find that eating high fiber foods sometimes helps with it. I have to be careful what I eat because there are still some things that are too rough (I can't eat shredded wheat, for example) but I add Benefiber to coffee or tea when I drink it and sometimes other things, and I've also found Metamucil fiber wafers to be somewhat helpful at times.
Nursing school is going well, thank you. Still not doing real great with my health, but I'm hanging in there so far.
Nursing school is going well, thank you.
Still not doing real great with my health, but I'm hanging in there so far.Report This| Share this:considering resectioning surgeryThat sounds about like mine, but I have no colon whatsoever. How much did they remove with your surgery? And also, now that I've healed from surgery, I find that eating high fiber foods sometimes helps with it. I have to be careful what I eat because there are still some things that are too rough (I can't eat shredded wheat, for example) but I add Benefiber to coffee or tea when I drink it and sometimes other things, and I've also found Metamucil fiber wafers to be somewhat helpful at times.<br /><br />Nursing school is going well, thank you. <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> Still not doing real great with my health, but I'm hanging in there so far.
Miserable_SOB replied to HannahLeigh89's response:
Be careful with the Imodium Jodi. I'm cursed with diarrhea and have tried Imodium to help get me through the misery. I might be able to possibly blame it for getting dehydrated 3 times already. The rest of the blame goes to my J Pouch surgery. I remember the last time I was dehydrated one of the questions they asked me in the emergency room is if I used Imodium. And I did remember using it that hot Summer day. Since then I've quit using it and haven't had any dehydration attacks. After all the misery I went through while dehydrated I don't want it to happen again.
Report This| Share this:considering resectioning surgeryBe careful with the Imodium Jodi. I'm cursed with diarrhea and have tried Imodium to help get me through the misery. I might be able to possibly blame it for getting dehydrated 3 times already. The rest of the blame goes to my J Pouch surgery. I remember the last time I was dehydrated one of the questions they asked me in the emergency room is if I used Imodium. And I did remember using it that hot Summer day. Since then I've quit using it and haven't had any dehydration attacks. After all the misery I went through while dehydrated I don't want it to happen again.
See Related Digestive Disorders Communities
Spotlight: Member Stories
I was told I have crohns in 2003 at the age of 33. I believe I have had it longer than that I just didn't know what it was. I had never heard of i...More
Popular Discussions
Helpful Tips
colitis/constipation
I have suffered all my life with the abouve problem. Perimenopause even made it worse. For the last 6 months i have been free of all ... More
Was this Helpful?
1
of
2 found this helpful
Helpful Resources
Related News
Report Problems to the
Food and Drug Administration
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.
Other Member Communities
- Dieting Club: 10 - 25 Lbs Member Community Share Your Tips and Support!
- Caregiving Member Community The Support and Understanding You Need!
- Parenting Friends Talking Member Community Get Support from Members Like You!
-
More Related Communities
The opinions expressed in WebMD User-generated content areas like communities, reviews, ratings, or blogs are solely those of the User, who may or may not have medical or scientific training. These opinions do not represent the opinions of WebMD. User-generated content areas are not reviewed by a WebMD physician or any member of the WebMD editorial staff for accuracy, balance, objectivity, or any other reason except for compliance with our Terms and Conditions. Some of these opinions may contain information about treatments or uses of drug products that have not been approved by the U.S. Food and Drug Administration. WebMD does not endorse any specific product, service, or treatment.
Do not consider WebMD User-generated content as medical advice. Never delay or disregard seeking professional medical advice from your doctor or other qualified healthcare provider because of something you have read on WebMD. You should always speak with your doctor before you start, stop, or change any prescribed part of your care plan or treatment. WebMD understands that reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis, or treatment from a qualified health care provider. If you think you may have a medical emergency, call your doctor or dial 911 immediately.
Health Solutions From Our Sponsors
About WebMD Advertise With Us Terms of Use Privacy Policy Sponsor Policy Site Map Careers Contact Us
First Aid WebMD Magazine WebMD Health Record WebMD Mobile Newsletters Dictionary Physician Directory
©2005-2013 WebMD, LLC. All rights reserved.
WebMD does not provide medical advice, diagnosis or treatment. See additional information.