Declining GFR and lymphocytic colitis - Early CKD Support

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Declining GFR and lymphocytic colitis

Tpicard
Tpicard
13 Replies

Hi can anyone tell me if they to have kidney issues (low GFR CKD) related to ulcerative colitis or lymphocytic collitis ... I would love to chat thanks

13 Replies
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MAS_Nurse
MAS_NurseAdministrator

Hi Tpicard,

I'm sorry I can't find any information that would be useful to you. I found one academic paper about a possible link between renal impairment and inflammatory bowel disease, but nothing else. What do you doctors suggest? They are best place to answer very specific queries like this.

Keep in touch and let us know what you find out.

Best wishes,

MAS Nurse and Moderator

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Tpicard
Tpicard
in reply to MAS_Nurse

We really haven’t made it that far yet..

My boyfriend was diagnosed with collitis last June via colonoscopy and then CKD in July gfr45 he stopped all work out supplementation, as he was taking creatinine. Which was also very high.

He was sent to a nephrologist and his labs went back up 62gfr creatinine was still high but in the normal range so the nephrologist dismissed him from the office as they said he didn’t have ckd

To me a gfr of 62 at 40 years of age is still a concern I can’t see why he was dismissed

Low and behold a year later his numbers are back down gfr 57 and he has not started back on any supliments so it can’t be that this time (his creatinine is also high 135)

His med for collitis is entocort which he has been on for almost a year

That’s the only one he can take as it is supposed to be filtered through the liver not the kidneys. I can’t seem to find a link as to entocort causing the low GFR either.

I have seen conflicting reports about IBS and it’s relation to CKD (auto immune or inflammatory connections)

All our family doc can say is “collitis is hard on the kidneys”

he needs to do two more tests over the next two months to then qualify again for referral back to the nephrologist.

I’m really looking for anyone who might have knowledge or experience in this aspect as I’m not really getting any answers from any specialist at the moment

My concern is colitis being a auto immune has manifested into auto immune of the kidneys and that seems to be a fast route to ESRF

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Marvin8
Marvin8
in reply to Tpicard

I've had UC for more than 25 years, but it was never really bad. 3 on a scale of 10.

I think part of the problem, aside from the autoimmune relationship to CKD, was the fact that the standard treatment for UC is the NSAID sulfasalazine, which I took for several years but never religiously. Smart move with the entocort. You're a good girlfriend to want to research this much. Btw, I also overdid it in the protein department, so that didn't help any. FYI, I'm 61 and was diagnosed 2 years ago with a GFR in the upper 50's. My last GFR was 52. Six years ago it was 75. 20 years ago, my creatine was 1.11. Last time it was 1.44. I'm watching my diet a little better now, trying to drink more, and working out more. I'm also fairly muscular even though I'm small and skinny. Going for my next blood workup in a few weeks, so I hope things haven't deteriorated too much. I feel like it's sort of a race against scientific progress like an artificial kidney. :D

Oops...forgot to mention that I've also had two small kidney stones and a tiny one still in there. Kidneys are small, but not terribly so. One is 10cm and the right one is 9.2cm.

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Tpicard
Tpicard
in reply to Marvin8

Hi thank you for responding

What has been blamed as the cause of your ckd ? We’re uou diagnosed with a ckd autoimmune or was it meds or something els ? ?

My boyfriends collitis was prob a 10/10 for many years (constant watery stools ) so I do think dehydration played a part in hampering his kidneys. He went undiagnosed for so long because his family doctor didn’t bother to look into it and he gave up trying .

I made him get a new doc when I met him lol

I’m hoping the drop in GFR for him is collitis related and not a secondary auto immune as the outcomes are much worse.

I hope your labs come back ok

Best of luck and thank again so much for responding

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Tpicard
Tpicard
in reply to Marvin8

Oh one more question ... how are you currently managing your collitis ?

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Marvin8
Marvin8
in reply to Tpicard

My nephrologist has no idea what caused my ckd and was loathe to do a biopsy because he said the treatment would be the same either way. I've always had pre-hypertensive blood pressure between 120 and 130 over 80. After my first kidney stone (dad had 'em too), my internist said I should be drinking at LEAST 3 liters of water a day. Said he tells ALL his patients to drink at least 2. I didn't follow that advice particularly well, so not only have I always been semi-dehydrated, but I've never been consistent with aerobic exercise to keep my BP down. I am now. Also, I've worked at home for the last 30 years and never got enough sun exposure for vitamin D production with the exception of summer...and even then, I prefer the shade. This brought my Vitamin D down into the gutter (level was 14), so I now take 4,000iu a day. Also, last time my bloods showed elevated TSH, which means a sluggish thyroid. Will get it rechecked soon because I'm displaying most of the symptoms of hyPOthryoidism...which can mess with your kidneys, heart, etc. if left untreated. Basically, all sh&t hits the fan when ya reach 50. :D

As for my UC, I haven't had any flare-ups for around 4 years, knock on wood, and the prior ones weren't terrible. Haven't had a bad flare up for many years and should have had a colonoscopy 25 years ago, but never did due to fear. Had one for the first time last year and it came back very clean...no polyps. Doc said he had a hard time seeing any scarring from the UC. Didn't say so, but seemed to doubt my original physician's diagnosis, although my original physician was the top gastro in Chicago. New guy wants me to come back and see him next time I have a flare-up instead of giving me a prescription prophylactically. I like the guy. I just remember that even my 3/10 flare-ups seemed like living hell to me. Lots of blood in the stool and tenesmus (rectal cramping as if you've gotta run to the bathroom). 10/10 means you're ready for a surgical resection. It's really that bad? I'm sorry to hear that.

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Tpicard
Tpicard
in reply to Marvin8

Awesome advice thank you !

I think I will start jason on VD

I say 10/10 because with complete watery stools for 10 years the dehydration is reeking havoc on the kidneys alone

He also has pain and swelling in the upper intestine to the point where you can visibly see it sticking out and he looks as though he’s 5 months preg

No blood as he has lymphocytic colitis and that is not a symptom

Lymphocytic is all through the intestines instead of in one section

He is reluctant to remove his entire bowel ever... but yes end result if it means it makes other organs worse that is the final outcome hopefully years down the road

As of right now he is hoping diet and remission after coming off the meds in a couple months will keep him steady enough he is not dehydrated and that will help with the kidneys hopefully

Stay in touch please

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Marvin8
Marvin8
in reply to Tpicard

What is "VD"?

I'll have to look up lymphocytic colitis as I've never heard of it before. The symptoms sound more like Crohns disease. Anyway, I wish you the very best of luck in dealing with this and I can thoroughly understand him not wanting to have a colostomy. Fortunately, even if God forbid it gets worse, they'll always try an ileoanal anastomois internal pouch first. But let's not put the cart before the horse. Just tell make sure he follows the nephrologist's advice and hopefully he can arrest any further damage.

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Tpicard
Tpicard
in reply to Marvin8

Oh i just meant vitamin D😀

Thank you for everything

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Tpicard
Tpicard
in reply to Marvin8

I wish you all the best with everything you have coming up

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Marvin8
Marvin8
in reply to Tpicard

Thanks. Fingers crossed. :)

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Marvin8
Marvin8
in reply to Tpicard

Oh, and as far as "VD", check the bloods first. You want it at 30 minimum and it's very very difficult to overdose until around 100. Most folks have waaay too little in their system because nobody goes outside any more due to fear of skin cancer.

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Tpicard
Tpicard
in reply to Marvin8

Makes sense thank you

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