Chronic Constipation

[TaffyTwoshoes27]

I have been on PD since Jan 2016. Recently, my issues with constipation have gotten to a very frustrating level.

I have tried: Prunes; more fruits/veggies; OTC softeners; laxatives; yogurt; probiotics; exercise.....and it is to a chronic stage.

If I take prescription Linzess or Trulance provided by GI doctors, I am going and going and going.

Softeners and some OTC laxatives don't work anymore.

My dialysate prescription and dialysis times were changed early 2020. I use a 6L bag of 2.5% and a 6L bag of 1.5% and usu. get a UF of 700-1000.

I will NOT take Miralax. I refuse to take anything with polyethylene glycol (antifreeze is ethylene glycol and many pet food treats use polyethylene glycol).

I recently used a Metamucil off-brand. It didn't help at all.

One Trulance tablet had me going potty on Tues at least 15-20 times w/in 3 hrs. Miserable.

Has anyone found something that works consistently?

Help!

[lowraind]

I have had problems with constipation due to intestinal scarring after having a colostomy and reversal. After several visits to the ER they recommended an appointment with the surgeon who performed both procedures. He recommended prune juice. Once I started drinking about 3 oz. at night, I have not had another problem. I know the potassium is a problem with prunes/prune juice, but the alternative pain is a greater problem. Each of us has to choose what works best for each of us.

[TaffyTwoshoes27 in reply to lowraind]

Thank you for the reply. I was just thinking this morning that I shld try prune juice next.Constipation is an inherent issue with PD patients (notwithstanding your colon procedures) mostly because the dialysis pulls fluids from the intestines and then the waste cannot move thru the intestines to the colon as intended.

I do not have potassium issues, so the prune juice should be fine.

BTW: the prescription “laxatives” like Linzess and Trulance seem harsh to my system and I only take one of them if I feel that a problem is occurring. I personally think that our GI systems get “immune” to other aids used - like yogurt, probiotics, psyllium husks, OTC laxatives, etc. , after taking them for an extended period and they stop working.

I guess it is just one more chapter of my journey to stay healthy on PD.

I am disappointed that my Neph told me wait times for Transplant in this area were abt 3-4 years and now it has been extended to 10 yrs because of the number of kidneys needed vs. available.

[Darlenia in reply to TaffyTwoshoes27]

That's a very long wait time for a kidney! If you don't mind sharing, where do you live?

[TaffyTwoshoes27 in reply to Darlenia]

I am just outside Atlanta GA.

[Darlenia in reply to TaffyTwoshoes27]

Oh my. I just checked and ALL the transplant centers in Georgia have very long waiting lists! Maybe you can travel to Alabama or Tennessee where some centers have much greater availability. This is a great link to check wait times. txmultilisting.com/wait.htm

[TaffyTwoshoes27 in reply to Darlenia]

Thank you. AL is the same region as GA and I have been told wait times are also long. Thanks for the link. NC is probably my closest transplant state outside my current region. They have 4 transplant centers.

[Darlenia in reply to TaffyTwoshoes27]

I assumed, too, that transplant centers within a given region would have similar wait times based on the new OPTN allocation system recently implemented. But my husband (age 71) was offered a kidney last week from a deceased 60 year old after only a year on dialysis. We were double listed at two centers in the same mid-Atlantic region - one had a very long wait list and the other had a two to three year wait list. The latter asked us to come in, but my husband had a uti and was turned away in the operating room. I'd like to add that my husband has blood type A - that generally makes transplants easier to acquire too. Yours may be more difficult.

In my opinion, this regional allocation thing works in very mysterious ways. I suspect hospitals with greater "supply" based on local demographics will transplant more people with shorter wait times than other centers located elsewhere in that same region with less availability. In any event, I sense it may be well worth your while to list at more than one - anything is better than what you now face. In our situation, most of my hubby's lab results are shared between the two centers. But we've also discovered drive time to either center is important. We got the call at 11:00 p.m. - not getting any rest for nearly 30 hours so we were incredibly exhausted - zombies at that point. (And we decided we won't opt for flying to centers which would only add more stress - driving to and parking at airports, finding ground transportation, locking down hotels, etc.) I truly hope you find your way around your nephrologist's projections (most don't actually work at the centers) and find success in getting that kidney; wait lists of 10 years are beyond reason. For us, it simply took a phone call to another center, followed by a brief visit. Go for it.

[TaffyTwoshoes27 in reply to Darlenia]

Thank you for the information. The Social Worker at my Transplant Hospital keeps telling me they are doing lot more transplants (sort of persuading me to NOT list at other facilities).I don't think I have the support network to list outside of my vicinity (unfortunately).

It is amazing how small a person's social network shrinks when they have to quit work (7 yrs ago). B/c of suppressed immune system and Covid, I'm not attending church yet. I just don't trust this Delta variant!

But, I have to do something. I sort of losing hope. 😐

[horsie63 in reply to Darlenia]

My opinion about transplant centers and the personnel there, and my experience has been brief, but they aren't in a life or death situation and so even if they see tons of patients they truly do not understand each person's unique experience with this.

[mfm1947 in reply to TaffyTwoshoes27]

I live near Charlotte, NC. The transplant program there is great.

[Erifre in reply to lowraind]

You can ask your Nephrologist about Lactulose, it is a mild prescription that maybe can help you. My husband takes it and he feels better. He has been in PD for a year.

[Jayhawker]

I’ve found that rating air popped popcorn will often get my bowls moving… prune juice is definitely another option.

Jayhawker

[TaffyTwoshoes27]

I chew Fosrenol, 1,000 mg at each meal. They don’t help with the constipation issue either!

[RhenDutchess123]

I take Magnesium Malate every night with about 6 to 7 oz of water just before I start treatment.....Keeps me a happy medium...Magnesium also helps with leg cramping....As always, check with your Doctor and check Magnesium levels...you dont want elevated magnesium either

[RonZone in reply to RhenDutchess123]

Hey, you said "leg cramping". I've not started PD yet (will start in the not to distant future) but leg cramping is an issue at night. Did you have that before starting PD? When did you started Magnesium Malate, before PD or after you started PD?

[RhenDutchess123 in reply to RonZone]

I started taking Magnesium Malatte about 2 years before I started Dialysis and my Nephologist has kept me on it after I started Dialysis...I usually take one tablet each am and pm..with an extra tablet pm if I have more cramping or feel constipation starting....but be sure and watch your labs ...you dont want too much either...and as always talk to your doctor first...

I might also add that magnesium helps carry Calcium also...so watch your calcium levels too

[RonZone in reply to RhenDutchess123]

hey, thanks for the info. I'm gonna have a chat with my doc next visit.

[TaffyTwoshoes27]

I was told not to take Magnesium products, specifically Milk of Magnesium. I will ask Neph about Magnesium Malatte (never heard of it).For leg and foot cramps, the BEST thing I have found to stop them in their tracks is Theraworx Relief (Dr. Pinsky advertises it. I use the bottle with pump that makes it a foam).

I have few cramps now. My Phosphorus is .10% over range right now, so that is better than it has been lately.

My Calcium has come down from 10.0 to too low (7.9) (Goal is 8.5-10.0). It is a matter of adjusting calcitriol/Vitamin D and food (I guess). Next telehealth for recent labs is next week.

Had my third 2-year Transplant re-evaluation yesterday. Need more tests but it went okay. It is a bit of an anxiety-producing situation every 2 years.

Thanks for the suggestions! Hang in there y’all!

[Calebzztop]

Hello again 😊.. I also have had really severe constipation..going every 10-14 days...which left me feeling so uncomfortable and just tired and bogged down..I had tests done and the Dr said he could see I was completely full of stool in the imaging. I tried everything as well...finally I'm almost back to normal, every other day...I walk 30 minutes twice a day and I drink Smooth Move senna peppermint tea at night and take 1 stool softener 3 times a day...and Iknow this sounds silly,but I have a stool I place in front of my toilet and put my feet up on it ,I place one hand on the wall for a little balance ...I don't know if its the position and angle but it definitely helps to move things along...sometimes Ihave to sit for 5-10 minutes, but it works!!! ..obviously I pay attention to my diet as well..but maybe the Smooth Move Peppermint tea and trying the stool will help you too..I read about it for chronic constipation and asked my GI and he said yes,it works great for a lot of people...and it worked for me!!I'm not sure how to friend people on here ,as you so kindly offered for me to do so...so I just clicked follow. Take care! And yes,it is so good to hear from other people and know you are not alone in this. 🙏

[TaffyTwoshoes27 in reply to Calebzztop]

I don't know how to make this post private that someone suggested in my earlier post that you replied to, but I am sitting on the toilet as we speak. They sell something called "Squatty Potty" that is a stool for in front of the toilet that is just for the purpose you mentioned. I am now taking Trulance 3mg prescription medication that I received from the GI doctor in sample form. I am trying to get a prescription for it from the GI now and unfortunately it is not on my formulary so Humana is requesting a Prior Authorization (which, as you may know, means that I have tried other medications or ways to alleviate the constipation but the Trulance has been the most successful - which is true).

I have no idea why that step takes the doctor's office so long to complete, but I am still waiting since last Monday. I take it every other day and it really moves things through. Being constipated really adversely affects my PD treatments (as well as being extremely uncomfortable as you said ) in that I get slow drains or a low UF.

Just another "walk in the park" that we kidney patients have to deal with!

Thanks for your suggestions!!

[Bronco1964]

Hi,

My 88 y o mother had issues with constipation. In additional to the Colace twice a day, MD added Lactulose daily, may repeat x2 daily if no bowel movements.

[Imjustamessenger369]

I was reading thru your comments I notice your a fighter. Have you stopped eating acid base foods? Since your waiting for a kidney I recommend you change your lifestyle and use natural herbs to heal yourself and build up your immune system. This goes for anyone else waiting on the right kidney. Think about it you can heal yourself if you get the right herbs and alkaline balance diet