Diverticulitis and warfarin

Posted , 12 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Brand new member here. Diverticulitis is a relatively new condition for me, about a year now. After a colonoscopy in December 2017, I was diagnosed with it. Polyp removed, gut cleaned out, and on to a high fiber diet. For the next 6 months, I felt great. Other than gurgly stomach, there was no left side pain, fatigue, bleeding, or diarrhea. All was well. Then I foolishly came off the high fiber diet in the summer while on vacation lots of greasy, fatty foods and the pain and fatigue returned. Two rounds of antibiotics (40 days in total) helped somewhat, but after I finished both courses, it’s as bad as ever. Most days, the pain starts in the early afternoon and worsens throughout the day. Fatigue sets in concurrently, and by the end of the day, I’m toast. To say it’s interfering with my job and family life would be to put it mildly I’m 46 with three young children, a demanding job, and a busy church (lay) leadership position. It’s become impossible to deal with.

Some days are better than others, but there seems to be no discernible pattern to the pain if there is a dietary trigger, I haven’t identified it.

To complicate matters, I have a rare blood clotting disorder which requires me to be on lifelong warfarin (blood thinner). This resulted in a modified antibiotics prescription of only sulfa (bactrim), because the usual dual-antibiotics regimen would heighten the effect of my warfarin to dangerous levels. The single sulfa regimen already heightened the effect to the highest level it’s ever been.

Being on only the one antibiotic may then partially account for the ineffectiveness of eradicating the pain... but it’s hard to say.

So at this point, with no resolution of the pain and the possibility for the diverticulitis to worsen, the next step seems to be surgery. But for a guy who already has an unusually acute tendency to clot, coming off the warfarin in order to have surgery plus actually having the surgery and the propensity to develop clots post-operation increases my risk of clots exponentially. It’s almost a death sentence. That may sound dramatic, but it’s not far from the truth.

Thus, I’m thinking this: there has to be some other way to manage this condition without the near-fatal (if not fatal) last resort of surgery. The prospect of it is downright scary. It just can’t be an option for me.

I’ve been back on the high fiber diet for two months, plus I’ve started taking probiotics, vitamins, magnesium, krill oil. I’ve also started exercising 3x a week. I’m trying to do everything I can to lick this thing without surgery. 

I’ve made an appt. with my Dr., but he can’t see me for three weeks. And at this point, I’m not confident that a visit will result in anything else other than a GI referral and recommendation for surgery. But there HAS to be another way.

I would be very interested to hear from anyone who has had success managing diverticulitis (either with or without being on warfarin), without resorting to surgery.

Lastly, I would add that it’s not in my nature to resort to hysterics, but don’t be misled by the moderate tone of my message. I am desperate. By the end of the day I’m an emotional wreck, wondering if tomorrow is the day my gut ruptures or I go into septic shock. I can’t bear the thought that my children might be left fatherless. I’m depressed and stressed out, finding it difficult to focus, and I’m beginning to lose hope. Any encouragement, ideas, and suggestions would mean a lot to me. 

0 likes, 27 replies

Report

27 Replies

Next
  • Posted

     My doctor gave me a low dose of prednisone only like a seven day supply that seemed to help get all of the inflammation under control. I was also put on Lexapro and as crazy as it sounds it helps with my GI issues. 
    Report
    • Posted

      Thank you! I'm glad Lexapro is working for you. It's great to find something that you know makes a difference. Anti-depressants are quite tricky to take with warfarin, so I try to avoid them if possible. They have also produced unpleasant side effects for me. But I like your prednisone idea. I've taken prednisone before for an unrelated condition. I'll talk to my doctor about it.

      Report
  • Posted

    Hi

    I am sorry you are suffering such distress.  I am guessing from your wording and the very long lasting dose of antibiotics you are USA based.  When you were initially diagnosed, did you have any symptoms, or take any medications at that time?  If not then you did the right thing by going on the high fibre diet.  But as you have learned, coming off it has consequences.  It does take a long time to recover from an attack of diverticulitis, weeks if not months, as your insides have been inflamed/infected, and all your gut bacteria, good and bad, has been stripped out.  Sometimes there seems to be no progress at all.  After my 1st attack it was 4 - 6 weeks before I felt better, and after the 6th it took almost a year before the pain finally went.  So do not be surprised if your doctor says you must give it time.  Not what you wanted to hear.  Depression, fatigue and anxiety are also very common, partly due to the side effects of antibiotics.

    You are doing all the right things now, replacing your gut flora with probiotics.  But there is such a thing as too much fibre, particularly insoluble fibre (comes out the same way it goes in).  Soluble fibre is better - I make homemade veggie soups which I blend.  One poster switched from All Bran to Bran Flakes.  If you Google soluble fibre, that will give you ideas.  Exercise is good - walking and swimming, but things like bending and lifting can overstrain your insides while they are trying to heal, so I wouldn't be into pumping iron.

    It is my personal opinion that surgery should be avoided unless in an emergency, or the quality of life is very poor.  It is major surgery and takes a long time to recover.  It is also not necessarily a cure, and there can be complications.  In your case there are very good medical reasons to avoid it.  Do you have polycythaemia?  If you are USA based, surgeons push for the chop (and your money).  In the UK it is only the very last resort, not an elective procedure.  Reading all these posts it is easy to think that complications are normal - but the opposite is true.  Yes, people do have problems, but the vast majority do not, get over their attack and stop posting.  My cousin had a perforation and described the pain as unbelievably agonising, so I think you would know. 

    But of course if your pain worsens, you must go back to the doctor.  If you can take it Paracetemol (Tylenol) should help with the pain, but not aspirin or NSAIDS.  I wonder if you need to speak to a specialist in your blood condition to find what is suitable for pain management.  So many medications clash with each other.  I hope you get some answers and relief.

    Report
    • Posted

      Yes, I’m in the US. I wondered if this site was UK-based. There are definitely philosophical differences in treatment on both sides of the pond.

      I had left-side pain, fatigue, diarrhea, and bleeding when I was diagnosed with diverticulitis. The diarrhea was likely from a low fiber diet and at least one food that I’ve since identified as a trigger. The bleeding was most likely from a polyp and/or hemorrhoids. The pain and fatigue were probably from inflamed diverticula.

      I run 3x a week. No weights for me. I’m a musician with some hand and wrist injuries, so I stay away from weights, which aggravate those injuries.

      Good point about soluble vs. insoluble. I’ll have to be more meticulous about it.

      I had read and heard that flare-ups can last for some time, so I was prepared for a long haul. This one is ongoing for 2 months. I wish Tylenol helped, but I’ve taken it, and it has zero impact on the pain.

      There are some additional symptoms that puzzle if not concern me.

      One is the constant fatigue. It seems excessive for the condition. Another is overheating and profuse sweating. I often find myself asking people, “Is it hot in here? Do you feel hot?” and they often say no.

      Have you heard about these symptoms as part of diverticulitis?

      Agreed, that if I went into septic shock, I’d know it right away, I’m sure. My concern is preventing it. Am I doing enough to keep the condition under control without it progressing to the next level? What’s the breaking point or trigger(s)? Will I just wake up in the middle of the night with excruciating pain?

      Perhaps the most exasperating thing is not knowing what the root cause is. To me, it seems like diabetes— you’re just born with it. You either have it or you don’t. Nothing you do or don’t do is going to change that, and that is frustrating and scary. It doesn’t matter what foods I eat or don’t eat, what I do or don’t do, I’m just going to have diverticulitis, and there’s no way to minimize it or live with it to some relative degree of comfort.

      I’d love to be wrong about this, though…

       

      Report
    • Posted

      Hi

      From what you say, you had an attack of Diverticulitis in December, so this is your 2nd attack.  Recovery time does seem to increase with attacks, so 2 months so far does not surprise me.  You will read here of people reporting 3 - 6 months. 

      Fatigue is also very common - some people seem to be affected more than others, and it is compounded by anxiety and depression.  I can't offer any advice on that, as I was one of the lucky people not to suffer depression.  However I've not come across people mentioning feeling hot.

      As for the pain, does it come over you in waves, like a swamping pain, rather than stabs?  I am wondering if you need some form of anti-spasmodic, rather than a pain killer, if your bowel is actually going into spasm.  I've heard that kind of pain described as similar to having birth contractions, so you might wish to ask your wife to describe her birth pains and see if they sound similar to yours.  I have learned to tell the difference and take Mebeverine for spasms.  I've not had a perforation, but perhaps someone on the Forum can describe their pain. 

      For me, the pain of an attack comes on slowly over a few days.  As soon as I feel it, I go on clear liquids for 48 hours, to rest the insides, then low fibre for a week or so, and that usually does the trick without the need for medication.  As for the cause, doctors will blandly say it's due to a bad diet and not eating enough fibre, but that's not strictly true.  It is undoubtedly one of the causes, but there are people who are slim, fit, have always followed a healthy diet and still have it.  I can think of at least 2 British world class performers who have talked about their bowel problems.

      I have read some papers where the thinking is modifying slightly to include the possibility of genetics playing a part.  Several members of my family had it, and as they were born in the 20's and 30's, they never had the high fat highly processed modern diet.  I have even read reports of people being born with diverticula.  It seems reasonably that you can inherit a weaker bowel wall and be more susceptible to Diverticular Disease.  Also in your case, your other conditions may be contributing factors - there is simply not enough known about the disease.  Because over 50% of 50 year olds and 70% of 80 year olds have diverticula, with 75% never having any problems, it's not high on the list of research priorities.

      Stress and anxiety are also triggers.  I think it's fairly well known that psychological issues can trigger physical illness.

      From what you say you are doing everything you can to reduce your risk.  One thing not mentioned, is I take a soluble fibre supplement every day and have done for 17 years , prescribed by my doctor.  Mine is Fybogel (Metamucil in the USA).  It's psyllium husk which is mixed with 12oz water and gulped down quickly before it thickens.  It bulks and softens the stools and makes them easier to pass.  It's very important to take lots of water with this disease, and particularly if taking the supplement, to ensure your bowels are emptied regularly and easily.  You don't want to get constipated.  But like everything else, it doesn't suit everyone.

      I very much hope that in a month or so, your pain will have decreased.  It's very much a waiting game.  Best wishes

      Report
    • Posted

      Regarding the pain, it comes both in waves and in stabs. And it's rarely in the same place. It seems to migrate to different areas of my left side. It also has been traveling to my groin and down my left leg.

      Is that typical?

      I almost wonder if there isn't something else going on in addition to the diverticulitis? But then I think no, because I had blood work done about a month ago, and everything came back normal. White blood cell count was fine, so I was not fighting an infection. The only thing was my vitamin D, which was low, so I've been taking a very high dosage of it 1/week. The doctor thought the low vitamin D could potentially be a contributing factor to the pain, but I doubt it.

      I do have Metamucil. I took it for a while, as recommended by my dietician, and it didn't constipate me. But I stopped, because I felt I was getting enough fiber from other sources. I should go back on it, though, to get an acceptable amount of soluble fiber.

      Overall, I am fortunate to not have constipation or diarrhea. As long as I maintain the high fiber diet and drink lots of water (which I try to do), I'm quite regular. It's just this miserable pain which concerns me. It does seem to be worsening, and I wonder when the tipping point will come. The worrying causes anxiety and stress, which makes me feel worse, and the cycle continues downwards. I'm learning to cope with it.

      Thank you very much for your support.

      Report
    • Posted

      Pain in my legs, joints, and back of neck, along with night sweats were some of the signs of my first onset of DD. I thought I had the flu. Turned out it was all linked to an infection (DD) in my gut. 
      Report
    • Posted

      Hi

      Yes the pain can come in different places.  My GP palpated my stomach and hit a few "hot spots" where I suspect there were infected diverticula.  I  get the pains mainly on the left side, but also in the right and down the middle.  I had forgotten the pure Aloe Vera juice another poster mentioned.  I took 1 teaspoon morning and night and it did help to calm down the insides.  I now take it in gel capsule form daily.  You need the pure version, not the flavoured drink, and it is revolting, so I had a cup of tea handy to swallow straight after, to take away the taste. 

      If you are regular without Metamucil you might be OK for fibre.  I'm not, so do take it daily.  But if you think the pain is getting genuinely worse (not just that you are more aware of it) you must go back to your doctor.  Your colonoscopy in December must have been clear but the cause for your worsening pain needs to be found.

      Report
    • Posted

      Wow, so different people can have a range of symptoms from diverticulitis. Good to know my groin and leg pain and sweats are not so unusual.

      I guess the thing that’s puzzling me is that my blood work revealed no sign of infection. So what is triggering the inflammation and associated pain?

      Was your doctor able to successfully treat the infection? You say this was the first onset, so I presume you’ve since had flare-ups?

      Report
    • Posted

      Exactly. Gotta figure out what’s causing the pain. But I don’t know how much confidence I place in the medical community. This condition seems so nebulous. Some doctors say it’s related to diet, others swear there is no correlation. And overall, they just don’t know what causes it. 

      What’s your take?

      Report
    • Posted

      I'm not a medical person and as you see, even the trained people don't know much about the condition.  I do know you can get inflammation without infection.  Some people have been told inflammation and pain can be due to adhesions from a previous flare up.  Certainly I've heard of that from people who've had operations.  Also I'm sure you've heard about appendicitis both acute and chronic.  I think the acute variety is infection where the appendix is removed, but the chronic variety is just left.  I've heard it called grumbling appendix because the pain just grumbles on from inflammation. 

      I was born with a back condition and often the tendons and ligaments become inflamed and swollen around one of my hips.  But no infection.  I know my DD was probably caused by overeating and possibly hypertension, although I've always eaten lots of fresh fruit and vegetables.  But there was also the family history, even from slim people, who had both DD and hypertension as well.  My father always blamed his bowel condition on his cycle racing as a teenager and young man - he never topped 170 pounds.  I played competitive sport into my 60's, only stopping because of my hip problem. 

      If you look back on your diet in your younger days, was it full of takeaways and/or fatty highly processed food?  Or perhaps it's related to your other medical conditions and you are fairly unique.  I spoke to my friend who has Polythycemia and she has bowel problems which she was told were a side effect of her medication.  They have also caused her to have leg ulcers and she feels constantly cold.  So it's anyone's guess. 

      Report
    • Posted

      IN my case at least, the whole thing started months ago with feeling like a had the flu -- all-over achy feeling: back of neck, wrist bones, legs, but more pronounced in the lower left side of abdomen, leading the dr. to test for kidney stones via a CT scan -- which showed up the DD -- and I was prescribed a mega dose of antibiotics to clear it up. I'm doing ok, but if I fall off the wagon and eat/drink the wrong thing, then, boom! here comes the discomfort again. So, I've decided to maintain a healthy diet of lots of water, no alcohol, homemade fruit/veg smoothies, soft diet. Every once in awhile, if I get a symptom like I'm about to have a flare up, I double down on the water and take a Tylenol 500 to mitigate the pain. So far, so good. Don't know what the future holds. But I'm trying to avoid surgery at all cost.

       

      Report
    • Posted

      Sorry to hear your suffering. This big DD really takes a toll on body and mind. I’m 6 months out from my first attack. Had Diverticulitis with abscess. Many rounds of antibiotics, that messed up my whole gut flora, which can takes up to a year to repair. With many Cat Scans, blood work, stool tests, breath tests, Endoscopy and colonoscopy my final diagnosis is Severe Diverticulosis (3 spots) on sigmoid, SIBO/IBS D and anxiety, panic disorder. My diet is low fiber , no dairy or gluten. High fiber Causes me pain. I see Physical therapy and go to Chiropractor/massage, they tell me that Diverticulitis causes lower back muscle pain that radiates to front lower left abdomen and groin, which causes pain. Due to the inflammation. So it effects the nerves and muscles. I find with me it’s the mind/gut axis’s. So do a lot of meditation, breathing, and yoga. Keep a good food journal,eat healthy, swim and walk. As for meds a good probiotics, digestive enzymes, vitamins D3, B12, Apple cider vinegar with warm water and lemon daily. And good teas . Avoid any inflammatory foods. Do not take steroids of any kind or NSAID s very bad for Diverticulitis. I do take Xanax for the anxiety part, but it’s only short term. I am pretty much pain free from my Diverticulitis now just working on the aftermath it left my body in. It takes time and patience. Miss Felinia has great insight and information on this sight, and everyone is unique in their own body so you just gotta find what works for you, listen to your body. My prayers to you and your family. Best luck for a speedy recovery from this. 
      Report
    • Posted

      Thank you very much for your response. Sorry to hear about your diagnosis of DD. The whole abscess thing scares me. But you're the second person with DD I've known to have an abscess and recover without surgery, so that gives me hope if I ever (hopefully not) have one.

      I exercise, take probiotics and other supplements, and I do keep a food journal, but I've yet to find a correlation between diet and DD. My bloodwork came back negative for Celiac and diabetes, so it seems to be neither gluten or sugar that is causing the pain. But I'm not giving up hope that I'll pinpoint the offending food(s).

      Your relaxation and meditation ideas are good. That's so important for managing the stress which inevitably comes with this condition.

      Report
    • Posted

      It is possible to be gluten intolerant without being coeliac.  I am.  With bread I get very bloated and with 24 hours the pains start, so clearly something in wheat/gluten is inflaming my insides.  Similarly my friend is lactose intolerant and gets the same problems with dairy.
      Report
    • Posted

      That’s true. My wife is not officially celiac, but she cannot tolerate wheat at all. It totally wrecks her body and gives her severe brain fog.

      Bloating is an issue for me, too, but it seems random and unrelated to wheat or any food that I can detect. For example, today I had my usual high fiber breakfast cereals, skipped lunch, and had my usual high fiber granola bar. Yet despite eating very little today, late this afternoon, I started to feel bloated. Why?

      This past weekend, however, I went out of town. For most of the weekend, inexplicably, I was pain and fatigue free. It was *heavenly.* I cannot tell you how good it was to feel normal again for just a couple of days. My new baseline has become to feel tired, in pain, and overheated, so I was starting to forget what it felt like to not feel that way. Then, Monday afternoon, it all returned, and I was back to dealing with the usual symptoms. This morning was particularly bad, with near-constant pain.

      I reviewed my weekend food diary, hoping to find a culprit and maybe bring this saga to a close. But no such luck. It was all the same foods I usually eat. There was nothing I omitted from my diet that might have been a trigger. Sigh. It was so demoralizing. 

      Maybe it’s some kind of preservative, nitrate or nitrite or something similarly foul that’s the problem? To answer your earlier question, yes, I ate a lot of junk food for most of my life. It’s been a staple (though I’ve never been overweight and still am not). And junk foods are full of all kinds of abhorrent ingredients. I wouldn’t be surprised if they eventually just took their toll on my gut.  I’d really have to go on one of these elimination diets to know. It’s a lot of work, and I’m tired as it is, but I think I’m just going to have to break down and do it if I ever hope to have some answers. The doctors certainly aren’t helping, so it will be up to me to take care of myself.

      Report
    • Posted

      There does not seem to be an obvious answer to your problem.  Just one thought - some people have reported it is possible to have too much high fibre and it's getting the balance.  For example, too big a portion, or the additives in a granola bar. 

      My diet is very bland and boring, but I've pretty much eliminated additives.  Breakfast is either 30gm proper plain rolled oats (not the powdered flavoured stuff found in sachets) made up with water and sweetened with fruit, or a poached egg with grilled mushrooms and tomatoes (skin and pips removed), no bread.  Lunch is either homemade blended vegetable soup or a plain salad (nothing with mayonnaise) with something like prawns, egg, cooked chicken.  Dinner is 3/4 plain vegetables with grilled fish or chicken and more fresh fruit.  Yesterday it was squash, cauliflower, broccoli and carrots, with a ray wing (skate), plus a peach.  This would probably suit your wife as well.

      I was bought up on very plain unseasoned food and actually don't like all the seasoning that is the modern trend - it really makes my hiatus hernia play up anyway.  From what I've seen of the USA cooking programmes, it's impossible to avoid seasonings, unless you cook for yourself.  I'm off now for 2 weeks on holiday and will be offline.  Hope you manage to find some answers.

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up