Diverticulitis and warfarin

Digestive health
1

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. 

2

 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. 

3

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.

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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.

5

Due to your unique medical situation, if you are in the US, I would recommend seeing specialist at either Mayo Clinic or Cleveland Clinic.  I have friends who have had extremely good success at both of these.  Don't know if you need recommendation, but would call and ask!

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Meant to say don't know if you need referral.

 

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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…

 

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Hello Mark, I also can basically only take Bactrim now ask your doctor because I have heard people can be on it long long term. I myself do better on a soft diet like veggies cooked really good, mash potatoes including mashed sweet potatoes, Plain greek Yogurt because of the high protien and the probotics in it I add my mash sweetpostoes with mashed carrots in it, Krogers sales it already mashed with the carrots in the mashed sweet pototaes you just pop in over for 50 mins. mine lastes like 3 days. I eat the plain greek yogurt twice a day in the morning and at night. I also take magensium called Mag Max from Dr Ron website which has activated B6 in it, and I drink LOTS of water. I use 100% prune juice for back up in case. I only eat chicken and fish NO BEEFor pork. I have been picking up only on walking and my stepper. For my treat I eat hersey's choclate pudding creamy and really good, I love dark choclate I mean dark from 70 to 85% dark I have narrowed that down to only 1 small piece a day. Ginger and raw honey have natural antibotics and a few other foods do a search on foods with natural antibotics. Mark, one thing for sure and TRUST me its easier said then done but please try not to stress and worry and allow fear to control your life and as you say there must be away for you to heal and have a life and there is and I know God will led you to that and please know God is our great physcian and our untimate healer. He will take your hand if you ask him and HE will walk through this with you. I pray for your healing and for God to give you wisdom and knoweledge through this and your life. Jeremiah 17:14 I say alot! I live with this DD and the worry with my other health conditions on top of it and have still at home two special needs children so I feel your fear and concern but the battle is the Lords and he has us in the palm of his hands.  I want to share these scriptures with you below:

HEALING AFFIRMATIONS

God forgives all iniquities, and heals all my diseases - Proverbs 103-3

Lord, It is written in Your word that if I cry out to You, You will heal me - Psalm 30:2

Lord, it is written in Your word that You will take away from me all the sickness - Deuteronomy 7:15

By His stripes I am healed - Isaiah 53:5

You Lord will bring me health and healing - Jeremiah 33:6

Lord, Your word says that My healing shall spring forth speedily - Isaiah 58:8

 It is written in Psalms 41 Heavenly Father, that if we remember and bless the poor that you will keep us alive and that you will raise us up off of our sick bed and heal our diseases. - Psalm 41:3

Lord You said that if I departed from evil and I would have health to my flesh, and strength to my bones - Proverbs 3:7-8

Lord You said that if I served You, You would take sickness away from me - Exodus 23:25

I cry out to You O\' Lord and you will heal me - Psalm 30:2

My body is healthy and strong and not plagued by human ills - Psalm 73:4-5

Father, it is written in Psalms 107:20 that You will send Your word to heal me, and Your word does will not return to You void, and that You will rescue me from the grave. - Psalm 107:20

You will heal the brokenhearted and bind up my wounds - Psalm 147:2

You Lord will bring me health and healing and I will enjoy abundant

peace and security - Jeremiah 33:6

Heavenly Father, it says in Your word in Malachi 3:11 that you will rebuke the devourer for my sake - Malachi 3:11

It is written in Psalms 34:19 that the afflictions of the righteous are many, but You will deliver us from all of them - Psalms 34:19

Your words will strengthen my weak hands and strengthen my feeble knees - Job 4:3-4

You Lord will heal all my sicknesses and diseases - Matt 4:23-24 

I listen to the voice of the Lord and do what is right in his eyes and he heals me - Exodus 15:26

The Lord is merciful to me in my weakness and he heals me - Psalm 6:22

I will not die but live, and will proclaim what the Lord has done - Psalm 118:17

God has seen my ways. He will heal me and restore my comfort - Isaiah 57:18

 

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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

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The only other thing I would try is drinking Aloe Vera juice. I got it at a health food store. It actually healed my colon after a attack. Probiotics are a must. I also get these at a health food store. Good luck to you.

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Yes, Mayo Clinic is excellent. I probably would need a referral, but it's worth looking into. Good thoughts, thank you!

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Aloe Vera juice. Wow, that's a new one. Glad you had success with hit. I'm willing to try it. Thank you so much!

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Thanks for the temporal and spiritual encouragement and for sharing those scriptures. I have a strong faith myself, and I've relied on it to get me through this.

Water is a must, agreed. I try drink plenty of it throughout the day. I'm constantly making trips to the restroom, but it's a small price to pay if it means healing.

Thanks for all the other food suggestions. The no beef idea intrigues me. It would be tough to give up, but if it was a trigger, I would do it. I'm going to *try* a rotation diet. We'll see how far I get. I suspect that things like sweets and junk food (both of which Iove) are triggers. So we'll see how it goes removing those from my diet first.

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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.

15

I can say that, for me, there is definitely an association between DD flare ups and diet. Like you, while I was monitoring my diet closely, with no alcohol, lots of water, lots of fruit/vegetable smoothies, oatmeal, soft diet, etc., I got along fine. When I got complacent after months of being symptom-free, I veered off the diet, and boom! here comes a flare up, severe enough to take a round of strong antibiotics. I'm back on the DD diet, and feeling okay. I'll do whatever it takes to avoid surgery for as long as possible.

16

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. 

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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.

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You have some good responses here.  I can relate to you with regard to being on coumadin anti clotting.  I have been for some years but a few months ago i had my first DD attack.  Cleared with antibiotics but at the risk of the INR increase.  I am very careful with my diet but i do like. Ho olate so will be trying to cut it out.  I had surgery two years ago for gallbladder, they took me off blood thinners and put me on clexane injections to bridge then after a while back to oral thinners, dr said that was normal practice.  I am hoping thing will settle down without flare ups, i think in uk surgery is last option. Have you had anxiety or depression in midst of this, i have found myself now with this too and wish i knew how to fix it, anti deps dont help me and the thinners restrict them too.  Never thought id find myself in this position.

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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?

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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?