APS & Severe Diverticulosis? or anything similar

[JPMcGee75]

Has anyone experienced or come across severe Diverticulosis or anything similar in relation to APS?

I was as diagnosed with APS in 2012 following series of DVTs and it's been manged with Warfarin within an INR range of 3.0 to 4.0. Have manged this well well until last year when my INR fell below 3.0 and I had a stroke and seizure which I'm still recovering from.

However, two week's ago when INR was in range started felling very unwell culminating with an emergency admission to hospital with severe bleeding from back passage. I was given a series of clotting infusions, 5 units of Blood, 4 Units of plasma and constant fluid and potassium solutions and my warfarin temporarily suspended. This was accompanied by a range of intravenous antibiotics for various infections that appeared or subsequently been acquired along the way.

Eventually after several days the bleeding was arrested and warfarin was reintroduced together with heparin shots as my INR was down to 1.1 - now after several days it's up to 1.7. My haematologist wants to continue this course of treatment until I'm back within my normal INR target range of 3.0 to 4.0.

The initial diagnosis of severe Diverticulosis is provisional for whereas it ticks some of the boxes it doesn't tick them all. There has been talk of possible APS related lesions or damage to the colon.

I'm still in hospital and will not be discharged until my INR is back within its range and I'm stable with no further bleeding. They then intend to do an endoscopy in a few weeks after I've had some recuperation time as I'm very weak and run down after this event.

If anyone has had similar issues or read of similar cases would be grateful to hear about it. Experience has taught me that all the issues I've had over the years since being diagnosed, my little APS friend always appears to be somewhere in the background.

Many thanks

Derek

[MaryF Administrator]

Hi Derek, you are not the only one on here to have issues with the bowel, TJSTICKYBLOOD can elaborate on that. I hope they get your inflammation down, and check things like your vitamin D to make sure you are not being made more inflamed by those levels being low, also at this time with bleeding make sure they also check your B12, Ferritin and Thyroid, an untreated Thyroid, (often missed due to the over reliance on the TSH test), can cause the bowel to slow down, coupled with Hughes Syndrome/APS causing a problem with blood flow to the intestines etc. Also it is not uncommon to have a compromised blood supply to the intestines, my own son was diagnosed with severe stomach cramps after every meal for years, until he had Aspirin and other support. We can't offer you medical advice but we can sign post you to reading materials, the right specialists and also other members on here telling you their personal stories. I hope you feel better soon and continue to recover from your stroke.

I enclose a few things for you to look at: irishhealth.com/article.htm...

health.harvard.edu/a_to_z/a...

ncbi.nlm.nih.gov/pmc/articl...

Also it is not unusual with us lot to have gastric problems such as Crohns Disease or similar and Coeliac Disease and or gluten intolerance.

MaryF

[JPMcGee75 in reply to MaryF]

Many thanks for your reply which I really appreciate and have taken the points you raised on board. I'm on B12 infections already but worth checking the others out, reading the links you've provided and hopefully getting to hear from TJSTICKYBLOOD.

Again many thanks and have a good day

Derek

[LONETREERUNNER in reply to MaryF]

MaryF,

I just recently came across a probiotic recommended me by my doctor. L Reuteri strain 30242 has been shown to increase vitamin D levels compared to placebo by 22.4%. And it maintains healthy fibrinogen levels As well as other things . I got a huge boost of energy from 2 capsules per day. Heart health from Life Extension foundation in the US. My wife took it at night and kept her up till 1 AM so I know it affects other people beside me. I’m gonna have my doctor check my vitamin D levels when I see him at the end of February. Been on it for three weeks. Check out the research on these bacteria it’s amazing.

[MaryF Administrator in reply to LONETREERUNNER]

Do you have a diagnosis for Hughes Syndrome/APS? I would never suggest any particular type of probiotic, you need to run this by your GP and specialist. I do take a strong one myself, but like everything else has been checked by my main specialists. MaryF

[LONETREERUNNER in reply to MaryF]

Yes it’s been a while since we talked. And the research is on pub med and from Biogaia of Sweden. You’re absolutely right you should discuss it with your general practitioner and show him the research. I did that with my hematologist with vitamin D and started a new treatment protocol for me.

[LONETREERUNNER in reply to MaryF]

Yes I do have APS .Primary. Thanks for the edit.

[LONETREERUNNER]

Hello Derek,

I also have APS and Diverticulosis which my doctor recommended me to get probiotics. Here’s where it gets really interesting! I’ve been on it for three weeks and got a huge boost of energy. L. Reuteri

StrainNCMB 30242 in Life Extension heart health. It’s been shown to reduce fibrinogen levels which I thought would be a boost managing my APS . Also trying BIoGaia Gastus probiotic from Sweden Who are the leaders in L. Reuteri production and research. You have to check out the research it’ Fascinating and reducing inflammation is one of them! I see my doctor in a few weeks for results.

( ADMIN edit..... anybody must seek advice from their GP and or consultant before taking any new supplement not already known to those doctors.)

[LONETREERUNNER]

Derek I forgot to add that this probiotic increases circulating vitamin D levels by 22.4%.

[judes]

Iv had APS and diverticula for more years than I care to remember I’m not sure if the two are related or not. It does flare up every now and then and have to have IV antibiotics which then screws my INR, nothing is simple.

J

[JPMcGee75]

Thanks for coming back, beginning to experience exactly what you say. Best of Luck Derek

[TJSTICKYBLOOD]

Derek hi there sorry to hear what you have been going through and sorry for the late reply. So I had a blood clot to the bowel (although) we did not know that at the time causing a perforation and a resection. Years later under going investigation for APS they attributed the perforation to a blood clot and found out I had lost blood supply to the stomach also. I do not have bleeding from the recrum but suffer continuously almost daily from stomach pain . The FODMAP diet has helped me get the severe pain a bit less and although I don’t follow it rigorously I have been able to find some foods that trigger pain and therefore avoid those particular things.

[JPMcGee75]

Thanks for the reply and sorry to hear about your past experience(s), but glad to know you're trying to keep it under control with the diet. Since last posting they've managed to stop the bleeding with the blood and water infections under control. Have now had a contrast CT scan but nothing untoward showed up. They've got my INR back up to 3.5 and if this remains with no further bleeding then I'm going to be discharged to recuperate and back in 6-8 weeks for Colonoscopy. One thing I cannot understand and cannot get explained by them is that prior to the event I was on Ramipril (7.5 mg) per day for blood pressure to maintain circa 130/95. They stopped the Ramipril at the time of the event for obvious reasons and it has not been re-introduced. However, without these meds which I've been on for years my blood pressure is averaging 105/80 since the event. Be interesting if anyone else has had similar experiences. Thanks for the reply which is appreciated, keep well - Regards Derek