To Surgery or Not? My story...
Posted , 4 users are following.
Greetings Forum:) My name is Daniel. I am from the midwwest US, on medicaid, 41 years old and would like to share my story and additionally ask those who frequent this forum for any helpful input they may provide!
I experienced what I thought was a bladder or uti infection in Oct of 2018. The pain came on one night after I ate an entire large pizza and passed out on my couch. I awoke with a deep pain in my lower left quadrant and by the next day I headed to the ER. CT scan results showed I had
DV. I was prescribed with Ciprofloxacin plus metronidazole (7 day course). This by far was my most painful flare-up to date. Within a few days the pain began to recede and was entirely gone in less than a week. I had been a rather heavy whiskey drinker (Jameson) for about 6 years before this condition arose. I stopped drinking after this flare up and that lasted for 3 weeks. I began drinking again and within 2 weeks I had another ER visit. This time they gave me a 10-day course of Ciprofloxacin/metronidazole. Same deal again, I quit drinking a few weeks and like a pro drinker I was back to drinking once my meds were all taken. A month passed and I had my third ER visit. This time they gave me Amoxo-Clav 10 day course. Finally on the third ER visit they suggested I go see a GI (this should have been recommended on my first visit). Each time the problem would come back although a little less painful each time; however, other symptoms began to develop and so began my education in lifestyle changes etc.
My first colonscopy/endoscopy was performed in Feb 2019. They found a few small polyps in my colon. Those were removed and came back clean after biopsy. There was some scarring from an ulcer in my stomach that did not need any treatment as it was on the mend. The doctor told me that I looked clean and was looking good. He only stayed and talked to me long enough to say a few things while I was barely coming to from the "michael jackson drug" they gave me, Propofol. The impression I was left with was that I had been misdiagnosed at the ER. Perhaps time to see a Urologist?
I had begun to experience urinary problems around the time of my 3rd ER visit in December. Generally these episodes of urinary retention would happen about 24 hours after a drinking binge. They would occur like clockwork each and every time I stopped drinking to take a several day break, never during the binge, always after. I should also add that I was a cigarette smoker when I was drinking. Additionally I was using cocaine on weekends with my friends at the bars. All of these no-no's were most certainly taking a toll on my condition not to mention my overall health. I decided that it was of importance to be totally truthful with my doctors about my usage so they had a good picture of what I was putting into my system.
I should also add that all my bloodwork came back clean. Kidney/Liver function, STD's, prostate all came back clean. The urologist put me on Flomax to help with my urinary problem.
It helped for a bit but then that feeling of urgency was still there, although not nearly as bad as when I was drinking. After the urologist said my latest CT looked clean for my urinary system they sent me back to the GI stating that my DV was still there. The GI gave me yet another round of antibiotics, this time a 10 day course of Levofloxacin. This did hardly anything for me accept give me some hope that I would heal.
By May 2019 I was starting to make some huge changes in my lifestyle. I had already cut the cocaine out a week before my colonscopy in Feb, so I decided to go all-in and stop the alcohol and cigarettes as well. To this day I am 100 percent clean. I began exercising again and changed my diet to things like chicken, salmon, soups, mashed potatoes, no skins from fruit,
no seeds etc. I have been drinking aloe vera juice and taking licorice extract pills to reduce inflammation. I am very proud of my lifestyle change but I must say that the problem still exists.
Most days of the week I am feeling ok comparatively but I will have one to two days a week where I am sore, bloated, cramping in my lower left quadrant. This is generally the times when I experience my urinary issues as well. Generally it can take me up to a minute or so to get a flow going when I need to use the bathroom. I am never able to push the urine out without that pain in my lower left quadrant, so most of the time I just let it slowly come out.Today, I had yet another CT scan and in two days I am back in to see my GI. The appointment is cleary going to be one where they are going to suggest me getting the surgery I am certain. Despite all my changes in my lifestyle the problems keep coming and I have to walk a very very fine line with my diet in order to keep myself feeling at 75%.
At first I was determined not to get the surgery but the more I live with this condition after nearly a year of this I am just about ready to crack and agree to the resection. It's too bad that all of my bad decisions in the past have perhaps led to me being here now but it's where I am.
I do have a family history of DV in my paternal side of the family. Nearly all my great-aunts had or have DV. None of them got the surgery, they just adjusted and lived with it for many years.
I could go on and on about all these things but all of this sounds mostly familiar to everyone here at this forum. If anyone has any questions I'd be glad to answer. I wanted to give an overhead view of my situation and get some advice from those who can say anything about the surgery. Is it worth it? Will my quality of life return? How long will I be out of commission after the surgery if I elect to do so? I am a music teacher by living so I'm able to just sit and teach, nothing physical really. I am also investigating doing some acupuncture / chinese herbalist therapy but not sure if that will even help my colon at all.
Thank you for taking the time to read my story. Looking forward to any replies.
Truly,
Daniel
0 likes, 13 replies
1231Pecan DanielBenjamin
Posted
Daniel, I have cut out alcohol 100%. Not one drop. My first attack was 2016. I thought I had appendicitis. CT scan quickly confirmed DV. I have to be cautious of diet. Favorites like chips and salsa tend to give me abdominal issues related to DV. Even get overall flu-like symptoms: achiness in joints, etc. A co-worker had surgery for her DV and highly recommended it, although following her surgery she had to have three (3) more revision surgeries because the connections in the colon came loose. That scared me for sure. As you've probably seen on this forum, outside the U.S., other countries shy away from surgery unless there's bleeding. There are patients with strong feelings on both sides of the surgery/no surgery issue.
j_09263 DanielBenjamin
Posted
Congrats on giving up your bad habits. My questions are do you eat at least 30 grams of fiber a day and do you keep a food journal? These are the most important things to do in my opinion. Also don't get constipated and never push. EVER. I have had a surgeon push for resection and 2 other surgeons say not yet maybe never. One said I could have surgery and hope it helped. HOPE...No if you are cutting up to 1/3 of my colon out it better help. There are people here who are very happy they had the surgery saying it is the best thing they ever did and people who really regret it. At the end of the day the decision is your's and your's alone. I wish you the best.
Julie
mjf3814 DanielBenjamin
Posted
First I would like to both thank and congratulate you on your honesty in sharing your story. We are what we eat/drink/take. Like you, I had 3 flares in quick succession in 2016. Like you my cousin and aunt also suffered DD. So I believe there is also an element of genetics on who suffers from DD.
Unlike you, I live in the UK where we are treated at home by medication and lifestyle changes only, unless there is a life threatening complication or zero quality of life. It took 18 months for my pain to recede to the odd twinge when I have eaten something wrong. During that time I suffered frequently from what I thought were UTI, but they would clear up after a couple of days on fluids only. Now I believe the problem was due to pressure on the bladder due to the scarring and healing of the inflammation from the DV. As the inflammation slowly healed, so did the bladder problems recede. I take Psyllium husk daily to keep my bowels working smoothly and also take daily pure Aloe Vera. I have kept a food diary and now (mostly) avoid my trigger foods - but I'm no saint and the odd bad choice happens!! Then I do get some bloating and discomfort.
You have been well scanned and all other conditions seem to have been ruled out and your prostate clear. You have only made your lifestyle changes 3 months ago, and I believe you should give yourself more time, hard though it is. I am not an advocate of surgery unless it is essential, but both my cousin and aunt did have the surgery, and both ended up with a stoma bag. They are major operations and will take time to recover. My cousin had his stoma reversed after a year and lived a normal life for a further 15 years until his 80's.
The thing about DD is once you have it, it is for life. If you have the bad bits removed, they can recur further up the colon. I had relatives in the medical profession and their advice was to avoid the knife if at all possible (possibly because in their positions they had seen the complications that can arise). If you can, it might be worth asking your relatives just how they manage daily - the truth, not what they think you want to hear. I was diagnosed over 20 years ago and lived a normal active sporting life until my hip gave out. Managing became a way of life and I don't even think about it now, unless I slip lol!!! Your GI, if they are good, will give you all the pros and cons, but in the USA, money is the bottom line and that's how they make their living. I suggest you go with all your questions prepared, keep your options open and think long and hard. In the UK money is also key, but the object is to save it by NOT doing expensive procedures! Very best wishes.
vic_07103 DanielBenjamin
Posted
daniel,
of course you do know the super powerful way you have with words; music teacher yes but writer/author to be. this story alone is polarizing. DO NOT take too much advise regarding surgery from the UK posters-- completely different scene hospitals/doctors. I'm in the US - had the surgery- I HIGHLY RECOMMEND IT. let them remove the diseased portion -- then the disesase is gone. i live it. you have already done the hard work, this is what you need.
mjf3814 vic_07103
Posted
Hi Vic
I am delighted to read you have made such a good recovery from your surgery, which looking back at your posts, I see was as an emergency and saved your life. May you always remain free of a recurrence!
vic_07103 mjf3814
Posted
mjf
thank you so kindly for reaching out to me, for doing your research on me and to say the nicest things!!!! the United states is more than FIVE TIMES the population of the UK, therefor me maybe five times the choices of hospitals, doctors, second opinions, , third opinions etc. but the rea truth is its NOT ALWAYS ABOUT THE MONEY . thats a myth. for instance DANIELS SURGERY IS FREE. 100% free to him . This is a government insurance program he listed on his post , medicaid. do you know anything about our medicaid proram? and how the hospitsls get paid? how the doctors get paid?
j_09263 vic_07103
Posted
Dude take a chill pill. Here in Canada where medical is free it is still about the all mighty buck. If I come through emergency and need surgery the doc gets paid a certain amount BUT if he/she can talk me into elective surgery the doc gets paid way more!!!!!
DanielBenjamin
Posted
I appreciate everyone's input here no matter which side of the coin the debate is on.
Today I visited my GI and she has set up a meeting with a surgeon so he can discuss with me my options. This would be an elective surgery and yes, I am on medicaid so this would be absolutely free of charge. I will know a lot more after talking to the surgeon what I can expect from the elective. I was told by my GI today that most folks who end up doing the elective surgery do not have to get a stoma; that is most of the emergency surgeries end up with the bag being installed. I was given this time a 14 day course of Cipro & Metronidazole this time
as well. I am still on the fence about what I will end up doing but TBH, I am sorta leaning toward the resection so far. Let's see what the surgeon feels about my particular case...stay tuned.
amanda35962 DanielBenjamin
Posted
Hi Daniel I'm having elected bowel resection on Thursday I don't care what it takes I had 5 attacks in one year, well done on your new lifestyle change the doc doesnt know whether I will have a stoma if I do it will be for a year at most, if like me they give you a option I would take it
Take care
Amanda, Ireland
mjf3814 DanielBenjamin
Posted
All the very best, whatever you decide. Please let us know how you get on, as all feedback will help others.
1231Pecan DanielBenjamin
Posted
Does anyone in this forum have any input about an overall feeling of flu like symptoms with diverticulitis? I have achy joints at times, which is alleviated when I take one tylenol 500 extra strength once a day. Sometimes I don't have the achiness at all. I was just wondering if anyone else has experienced this.
DanielBenjamin 1231Pecan
Posted
I myself have not experienced achy joints; however, there have been a plethora of other symptoms that I have equated to DV. Asides from the obvious pains in the lower left quadrant, there has been urgency, testicular tenderness, numbness in my upper left leg, numbness in my left kidney area, etc.
DanielBenjamin
Posted
I met with a surgeon who has a great reputation here and I have elected to go forth with the surgery. He said that my DV is chronic but not complicated. That said, I will not be given a colostomy and it will be laproscopic. After speaking to a number of friends who have had this surgery and the overwhelming number of folks said that their quality of life returned, were able to eat as they wished and their cases never returned even after 10 years. I feel that given the amount of antibiotics I've had to put in me in one year and 3 ER visits, this is the right choice for me. My percentages of complications rise with every flare up and right now my percentages of danger are higher if I do not elect surgery. Waiting to hear back from the schedulers but it looks like mid-August is going to be operation time.