Sigmoid colectomy

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Hello everyone, I am 26 years old and I was diagnosed with diverticulitis last July. It had flared up 4 or 5 times before I went to the hospital the first time, I was being stubborn and thought I just couldn't digest meat very well. Then it was flared up for 2 weeks and I was trying to work through it and basically collapsed, I lost all energy and couldn't even stand. After I got home that afternoon I passed out in the middle of the floor 3 feet from my front door and my wife made me go to the hospital. They said I was constipated and sent me home. 3 days later I went back and was in the hospital 5 days. This past August it happened again but I had a terrible headache to go with it, apparently the infection had spread to my blood stream and I was in the hospital for 6 days. It was odd to me bc my stomach didn't hurt near as bad as the times before. After healing for 6 weeks I had a colonoscopy, and the Dr told me that if I didn't have my entire sigmoid colon and 2 inches of my decending colon removed that the next flare up could kill me. I have to talk to a surgeon on the 8th, but the only time I talked to the GI Dr was when I was coming down off of the sedation meds from the colonoscopy and don't even remember getting into the vehicle to come how. Can someone please tell me what I should expect from all of this? What are the chances I will not have to do this surgery again, and will this correct it and my life go back to normal? Someone just sharing their experience might make me feel better about it. I'm pretty much freaking out about it, mostly because I have a 6 year old daughter.

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  • Posted

    Corey so sorry to hear about sigmoid. I’m in the same boat with you. My resection is scheduled for November 21, along with gallbladder removal. So i’m Freaking out to. I won’t bother writing my story as it’s already here.

    https://patient.info/forums/discuss/waiting-for-surgery-my-story-618392

    My surgeon is taking my sigmoid and part of my decending colon as well. He told me that he would “try” to do it all laparoscopically but told me not to be surprised if he has to open me up, depending on how much has to be taken.

    I’m hopeful that this will bring me bro normal as well. I’ve done some research about recurrent surgery and have found that it can occur again in other parts, but it took me 25 years to get to this point, so I’m hoping it won’t happen again.

     

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    • Posted

      Sorry to hear anyone going through this, I work night shift and we had a pretty light night tonight so my mind has been wandering to much. I hope all goes well with you. I don't have any idea how long I have had diverticula but I know I was diagnosed with diverticulitis at 25 years old.

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    • Posted

      Corey I was diagnosed at 30, with diverticulitis. Before 30 we thought it was allergic reactions to foods, or IBS. Even after the diverticulitis episodes I still had flares which we still thought were allergic reactions. It wasn’t until this time that we finally put it all together because of the surgeon I had in August. He was the first health care professional who understood diverticula disease. He was so informative and made me realize that most if not all of my problems over the past 25 years could be attributed to DD. My condition started 25 years ago when I suddenly had to go to the toilet with excruciating cramps that crippled me to the point of paralysis, extreme diarrhea and vomiting at the same time, accompanied by profusely sweating, and finally passing out and rushed to hospital. That was the first time and that occurred countless times over 25 years. We always thought these were allergic reactions to eating something or IBS. I did it all, tests, scopes, diets, holistic stuff, eastern medicine, acupuncture, you name it I’ve probably done it. So.. this surgeon told me it was most likely attacks of diverticulitis all along and I think he was right. It’s just like my lower right back pain I’ve been having for the past 8 years, DD. My left testicle has had periods of intense pain for weeks. DD. So my GP has been treating these all along not realizing that they were all connected to DD. But this surgeon knew it! Since then the research I’ve done confirms it. One thing that I believe has made things worse is that my GP prescribed me a topical NSAID for my lowe left back pain and I’ve used it for years because it works great! The only problem is that NSAIDs make DD worse according to the research I’ve found. 
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    • Posted

      Hi so sorry to hear this what is a flare up as ive only just been told i have dd doctor said i had ibs now i know it was,nt
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    • Posted

      I think you are very brave to have all these probelms and hope your going to get better soon i can,t say on here what i think of this dredful illness good luck
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    • Posted

      Thanks Maureen.

      It probably sounds worse than it is. Don’t get to freaked out by reading some of these posts, DD is a nasty disease but it can be managed. I did it for 25 years before it got to this point, it’s an up and down type of disease. I’ve had good periods that lasted for months. You really need to do a lot of research because everyone is effected differently by this thing. Diet and stress are the big triggers for me. Food has always and continues to be a challenge for me, but the stress is my nemesis.

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    • Posted

      Thats good news as you went 25years that would make me 100 i don,t think so im also a very stressed person and have suffered mental health probelms think i was born a stress head, of course this is not helping dd i know, this happened in april this year when my husband was told he had bladder cancer , i freaked out how do i find research thank you so much
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    • Posted

      Maureen a good place to start is probably a place like YouTube, I like learning by watching videos when I’m not feeling well. You will find everything from professional type videos to videos made by regular people. 

      Moderator comment: I have removed the links as users can easily find the information using Youtube search rather than linking to specific channels. If users want the specific links use the Private Message service to exchange (click the envelope next to relevant username).

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    • Posted

      Hi thank you so much for your help sorry to ask so many questios would you know were or how i could get a diet sheet from? Drs and hospial of no help for me can, seem to get up from the net as i dont have a printer all the dr said when i had camera was up your fibre keep well
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  • Posted

    Hi Corey

    You are so very young to be told your DD needs immediate surgery.  Are you USA or UK based as that makes a great difference to how this disease is treated.  In the UK surgery is very much the last resort - it is treated with antibiotics and dietary lifestyle changes.  So if you are UK based and told you need surgery then it is necessary. 

    However if you are USA based, it seems in many cases, more than one flare and its chop, chop.  Once your colon is removed it's gone.  There are plenty of people on this forum who have reported that the disease simply flares up again, further up the colon.  Others who are fine.  You need to ask what happens after the surgery - will you be joined up internally immediately, will you have a temporary stoma bag, or will you have to have a stoma bag for the rest of your life?  It will affect what you can eat in the future and so this is life changing information.  It will also have a significant effect on your marital life so you need your wife's input.

    It sounds from your description that you had a really significant infection which became worse because of the delay in treatment.  However antibiotics taken promptly can get the infection under control and a suitable diet can allow you to live a reasonably normal life.  However this is a condition for life - once you have diverticula in your colon they don't go away - and you have to work at making sure they do not become infected.  I have managed for almost 17 years now, but am UK based.  The drugs do have some unpleasant side effects though, and these are also discussed on the forum. 

    I think you need a lot more information and perhaps a second opinion to make an informed decision.  Best wishes.

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  • Posted

    I also meant to say you should just how severely and permanently the infection has damaged your colon, and whether over time your infection would heal sufficiently to enable you to manage with diet and medication.  Is surgery being recommended as a necessity, or a preventative measure?  I'm not a medical person but did discuss my disease with 2 cousins, one who was a medical person, and one who had the operation and a permanent stoma bag afterwards.

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    • Posted

      I had several flare ups that would almost cripple me for 2-3 days and in that time I just wouldn't eat and drink a lot of water. The really bad one lasted 2 weeks and I worked most of that 2 weeks. Climbing up and down on and off of tanks and railcars moving 55 gallon drums and stuff like that, until I passed out due to dehydration. I do live in the USA, I was told by 2 hospital doctors that if it was to flare up again it would burst. They said that from the 1st CT scan with contrast to the 2nd one the thickness of my intestinal wall had been reduced by roughly 60%. The GI Dr who done my colonoscopy said I had no choice but to have surgery bc of the damage that was done by all the flare ups I've had. If I had to guess I would probably say I've had 8 flare ups. I really do not want to do this surgery if at all possible, but with that many flare ups I don't think it's likely not to. However, I do not know much about this and I know for a fact the doctors in the UK have a much better grasp on this rediclious disease.

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    • Posted

      Thanks for the detail.  Yes, that is a considerable reduction and the risk of a rupture or fistula does seem very real, and can be life threatening.  This is what happened to my cousin who required the operation (he was in his 60's though, and retired).  At 24 I can understand why you did not think it was anything serious, or could have such significant long term consequences.  Also you have a physically demanding job which can place stress on your abdominal area.  I think I have given you some idea of the questions to ask your surgeon.  You also need to add to that list, to find out what it means for your job - what you will and will not be able to do.  You should ask if the plan is to operate laparoscopically (which is much less invasive with a quicker recovery time).

      Regrettably it seems that surgery will be necessary, due to your internal damage, and I think you will need to make permanent major changes to your diet and lifestyle to keep on top of everything, and pick up any early signs of future flare ups.  Depending on what you are told today, you might look on this forum for colectomy, sigmoidectomy and stoma bags, to find out how those who have been through this cope, and how it fits in with their working life.

      You really need to take advice from a working man in the USA who has been through this, not a retired female in the UK (me!).  I know what has worked for me will not be appropriate for your circumstances.  So anyone out there - can you help Corey?  I wish you the very best of luck.

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    • Posted

      To be honest I thought it was nothing serious the first few times, I just thought it was a pulled muscle or something. Then it seemed to get worse a little bit each time. Then the next time it hurt so bad I thought it was stomach cancer or something and I was kind of afraid to know what it was, then it just went away. Then the first time I went into the hospital it was horrendous, and I kept thinking it would just go away on its own like it did in the past, I was wrong. The surgeon said there is good sections of colon above and below where the bad is he also didn't seem like I was at an immediate risk. He told me the chance of having to put in a stoma was extremely unlikely. He said the surgery was definitely needed but acted like it was more of a preventative measure to keep it from flaring up again. Also he said that if at any point I feel like its starting to flare up just to call his office and he would prescribe antibiotics. After talking with him it seems to me like it's not a serious as what the others thought. Could one surgeon be right and 3 other doctors be wrong? I doubt it but I have no idea.

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    • Posted

      Hi Corey

      This is a tricky one.  It sounds to me that what s/he is suggesting is just to cut out the damaged bit and join up the rest without the need for a stoma and bag.  This is the simplest and least invasive of all the procedures, so once you are healed you should be able to resume a normal life in most aspects.  But you would ALWAYS have to watch your diet, and jump on any future signs of infection immediately. 

      My experience with doctors is that they always give you the worst case scenario, just to cover their butts, and not get sued.  I get the feeling you are at risk of a flare up and a high risk of obstruction and/or perforation, due to the damage and narrowing, but not in immediate need of surgery.  Only you and your family decide what is best for you, and I appreciate there is a lot of conflicting information and advice out there.  In the meantime I suggest you ask your doctor whether or not s/he feels a stool softener like Metamucil would be beneficial, and that you look up the posts on this Forum by julia1040 about diet (about a year ago) and also read DiviDiners.  I also suggest you keep a food diary to see what foods trigger your symptoms.  For me it is gluten and full fat, for others it can be all sorts of things - dairy, red meat, popcorn.  Everyone is different and you have to find your own way.  I have lots of soluble fiber - soups, veggie purees, lots and lots of liquids.  I cook well and chew thoroughly.  It all helps keep the bowels emptied out regularly, which is the most important thing.  If you are not a veggie eater this might take some getting used to - and Mac 'n Cheese is not a veggie!!!  (On a trip to the States I was told veggies of the day were fries and mac 'n cheese.)

      One of the hardest things you might find, particularly as you are such a young man, is the total lack of understanding by most people, of this disease.  It's not just an upset tummy that gets better by itself, as you have discovered.  You will need the help and support of your wife, particularly in preparing your meals, if you don't do your own cooking, and be very cautious with take-aways.  The good news is I've not come across people who have problems with alcohol triggering symptoms.  If you read this forum, you will find most people take a good few months to come to terms with what they can and can't eat or do, and to lose the fear of flares and "accidents".  This is normal. 

      As for me I have had the disease for almost 17 years and have a very narrow twisted colon.  The disease is throughout the colon so I would not be a suitable candidate for the surgery your surgeon mentioned - it would be a full removal and permanent bag for me.  But I have managed with antibiotics and diet, plus a daily dose of Fybogel (the UK equivalent of Metamucil).  During that time I had 3 flares in the first 14 years, but a further 3 these past 18 months.  I am at high risk of a blockage but the UK does not do preventative surgery, so I take great care with my food.  Good luck.

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    • Posted

      Thank you ma'am you have been a huge help. Fried Mac and cheese was the vegetable of the day? That's insane I've never in my life heard of that, and I live in the south. So even after this surgery my stomach will not be normal again, and I still can't eat what I want to? I haven't been able to eat steak in a year and a half. I've tried to 3 times it always hurt the bottom left side where the sigmoid is. If someone can't eat after surgery like they did before they were diagnosed with this dreadful nonsense then that is depressing. Me and my wife have been married 7 years and every anniversary we go to a steak house we went to the day after we got married. Last time I went I ate chicken fingers. I know, some people are much worse off then me, I do not want to sound like I'm complaining. I'll definitely look at the diets u mentioned, I have been quite confused about a diet and found a lot of conflicting information. I use to be quite fond of chicken but I'm steadily getting burnt out on it. I was under the impression that I couldn't eat a lot of vegetables like broccoli, lettuce, spinach, and things of that nature so I was confused as to how I could eat a high fiber diet. I have talked to the surgeon, but I haven't set a date or even decided if I was going to do the surgery. It seemed like he was thinking it was a preventative measure, I want to try to control it some other way. I do want to wait as long as I can if I do have surgery bc to my understanding it may not work well because diverticula may form somewhere further up. Not to mention it could cause me even more problems. On the other hand the other 3 doctors really think it's necessary to do it now or it will burst.

      My wife and I talked about it a lot. I think right now we are leaning towards do the surgery soon after the first of the year. I kinda feel like I have caused my sigmoid colon to have a lot of irreversible damage for being stubborn or just ignorant to what this is and how dangerous it is. I'm hoping maybe if the bad is taken out that it will kind of be like a fresh start, and I will know the feeling if it ever starts again and get antibiotics immediately. Either way I'm definitely going to eat more fiber, even if I have to take fiber pills or metamucil. I've never had a problem with eating vegetables, but I can see where I should have been eating more instead of just potatoes. Thank you again for your help

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    • Posted

      Btw, you only had 3 flares in 14 years now you have had 3 in 18 months? That's terrible, it seems like to me it takes a good month and a half to feel normal again after a really bad flare up. I really hope you can find some way to get it back closer to the 3 every 14 year's.

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    • Posted

      Unfortunately this is a progressive disease.  The better you take care of yourself, the better you should be.  The last 3 flares were my own fault for eating far too much ice cream, and letting my weight balloon up.  It took almost a year to start to feel more normal, but apart from the odd twinge, I've been OK since July, and a LOT more careful with what eat, plus I've lot 16 pounds with more to go.  I should have known better after all these years lol!!!

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    • Posted

      I started a reply to this, almost finished and my PC seized, so here goes again!  I've read lindalaz post and totally agree.  I too avoid all the foods she mentioned and remove all the skins.  That's how I manage.  I rarely eat red meat, maybe a couple of times a month, and touch wood, am OK.  Have you tried a burger rather than a steak - red meat actually takes just about the longest to get through the system.  I make my own with ground chicken or turkey.  I think the current guidance from the doctors is that you can eat normally afterwards, but you will only find out by trying.  If it upsets you, then don't eat it! 

      I also eat a lot of fish (not fried) but I like to marinade (1 tsp soy sauce, 1 tsp lemon juice, 1 tsp maple syrup on a salmon steak) or season it well before grilling or baking.  I make sweet potato wedges, by peeling, cutting them up, spraying with 1-Cal, seasoning (a touch of paprika or curry powder for a change), then baking.  Just a couple of ideas - a chance to try out new but healthy things.

      You've got a couple of months before the New Year to try out how diet works for you.  I would really recommend you try Metamucil in powder form, which you chug down with 12 oz water immediately before it thickens.  It needs to do that in your tummy, not your gullet.  It will bulk and soften the stools and you may need to go more.  I go 3 - 6 times a day, but you wee that much anyway!!!  It is also very important to take on enough fluid and not get dehydrated like you mentioned in your first post.  The less you drink, the harder your stools, the harder to pass, the more likely poo will get trapped and set up another infection.  I believe - with no medical backup whatsoever - that a well emptied colon is a good colon with this disease.

      I wish you and your family a happy Christmas - I'll bet your daughter is excited.  And enjoy the turkey!

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    • Posted

      When I was 17 in stopped drinking coke, or any carbonated drinks like that for 3 months and drank nothing but water. After 3 months I started drink one a day when I eat supper, and never drink 2 in the same day. To this day I do that and I drink about 90-120 ounces of water a day especially when I work. Idk but for me I get dehydrated extremely easy during a flare up no matter how much water I drink. Thank you for the food ideas, I cannot stand the taste of fish, I've tried to but never can like it. I have never really ate healthy, I've always eaten a lot of fried foods but always ate vegetables of some kind with it.

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    • Posted

      I wish you and your family a Merry Christmas too, yes my daughter is very excited.
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