Finally ended up w/ 9” of my colon removed. - PMRGCAuk

PMRGCAuk

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Finally ended up w/ 9” of my colon removed.

LarryLeek profile image

I wrote a post a little over a month ago about my issues w/ diverticulitis, which is a colon disorder. After 3 stays in the hospital since Feb. I was once again hospitalized on Monday the 30th, only this time it was scheduled so that they could removed the bad part of my colon. Initially the surgeon, after cohorting w/ his collegues was very concerned & wanted to avoid surgery due to the fact that I have been on prednisone since last October. They feared that since prednisone weakens the immune system that I might not heal & could be @ risk for a staff infection. The surgery was an overwhelming success & I seem to be healing very quickly as I did when minor surgery was performed bk. In mid June to install a drain tube in my colon so infection could drain. The surgeon wanted to rid my colon of any infection so that when he performed the surgery on Monday I wouldn’t have the worry of wearing a colostomy bag for 6 months. He also told me that it’s HIGHLY possible that my PMR could have been triggered by my colon issues & after doing months of research I myself have discovered a link between many people suffering from PMR, which is poor diet. Not saying it ties everyone together but I have found that it is one thing many have in common. My surgeon told me w/ my colon issue now gone for good, that with a healthy diet & a good exercise program to keep my body in shape that he feels certain that my PMR’s days are numbered. Just before my surgery w/ the infection now drained from my body I purposefully cut my prednisone dosage from 12.5mg a day all the way down to 5mg & got no flares what so ever. I still suffer from some stiffness in my elbows & wrists & a little bit, thou not near as bad in my hips. Now I am combating the PMR w/ different dosages anywhere from 10mg a day to 7.5 & yes 5. Remember I’m doing this on my own but so far I’ve had great results. I’m taking the 10 & 7.5 doses twice a week & 5mg 3 times. The days I take 5 as I’ve said I have had no issues. I never returned to 12.5mg & never will again. If you are having any kind of issues w/ your diet or digestive system, if possible I STRONGLY suggest that you get this issue resolved & I TRULY believe that you will see the effects of this HATED infiltrator greatly diminished & on the way OUT..... Good luck everyone & continued prayers for you ALL. As before I will keep you updated on my condition & hopefully I will have even better news to share soon.

23 Replies

You have been through so much suffering LarryLeek and still you remain strong and concerned about others. I am happy that your op was a success. Please rest and recuperate now!

Thank you SheffieldJane. I feel we are all in this together & always will. We have Jesus on our side for sure & couldn’t ask for better support. My dream is to see this illness along w/ GCA defeated completely. I will always keep everyone in my prayers....

Bless you!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hope you continue to make good progress.

LarryLeek profile image
LarryLeek in reply to DorsetLady

Thanks DorsetLady, words can’t express what a blessing YOU & others have been to me in learning about PMR. I am forever grateful for your insight & thank God for leading me to this forum. He knew where I need to go & this is where he sent me. Though I have never met you guys in person I LOVE ❤️ each & every one of you & will forever be in your corner you can count on that....

PMRpro profile image
PMRproAmbassador

All the best for a full recovery

LarryLeek profile image
LarryLeek in reply to PMRpro

Thanks PMRpro. Continued prayers for you & all my friend....

Hi LarryLeek, welcome to the club. I had about 6 inches of my Colon removed due to a tumor caused by diverticulitis. That was 24 years ago and I am fine apart from PMR which I have had for nearly 4 years. I am now 74 and feel in the main great. I am now on 2.5 mg pred and fingers crossed that I can continue to reduce. Only time will tell. Take care of yourself and adopt a high fibre diet which will help from now on.

Pete 😎

LarryLeek profile image
LarryLeek in reply to

Wow 2.5mg that’s GREAT Pastit & I pray in Jesus name that you are healed of PMR VERY soon, man that would be terrific. But it truly sounds like you are extremely close to the other side if you aren’t there already. Keep up the good work my friend.... Yep it’s high fiber all the way here on out 🙂

Good luck to you Larry, sounds like you've been through the wars and come out the other side. You most certainly haven't let it grind you down. Interesting link between your colon problems and possible onset of PMR.

LarryLeek profile image
LarryLeek in reply to teesher

I feel we ALL have been thru it & that we share in a common goal. I sincerely want to see EVERYONE of us reach that goal & I will continue to spend my days doing research....

Welcome to the" missing chunk of colon club" Larry, Good luck with your tapering plan it's different for all of us! At last the diverticular pain is gone for you.

LarryLeek profile image
LarryLeek in reply to

It sure is & thankyou Jesus....

Hope you are feeling much better soon. ❤

LarryLeek profile image
LarryLeek in reply to HeronNS

Thanks HeronNS my friend....

Well Done Larry that you are out the other side! Surgeons do worry about us being on Pred but many of us do just as well after Surgery as folks who don’t take Pred.

Good Wishes for a full & speedy recovery, please keep us posted on your progress.

Best Wishes

Mrs N

LarryLeek profile image
LarryLeek in reply to

Thanks MrsNails, I certainly will keep everyone informed. Knowing what we have all gone thru suffering from PMR & even worse those having to deal w/ both PMR & GCA my heart will always be in this corner. Even if I completely overcome this affliction I will continue researching this HATED infiltrator in hopes that I can help in some small way in determining its cause & hopefully help in finding ways to make it quickly become bored so it heads into the sunset. How great would that be?

in reply to LarryLeek

That certainly would & in the meantime it gives you a purpose especially if you’re feeling below par after your surgery.

Take Care 🍀

Speedy recovery and I hope the taper continues to go well!!!!

In reading your posts and replies I am a bit anxious. I have been diagnosed with diverticulitis. My Mum had it and all sorts of food affacted her, but she never had an op or anything sinister as a result of diagnosis. I have always just had the attitude that I have just inherited it and may need to worry about it later. I had no idea of possible consequences mentioned here. What signs and symptoms do I need to be aware of that may tell me I need to see someone about it? What diet tips can you give me to keep things at bay? Currently no probs and fingers crossed it stays that way! Pleased that you are so much better than you were.

Hi Marilyn1959, might I say 59 was a good year that’s when I was born lol. As for the diverticulosis the myth has always been don’t eat nuts, seeds, lettuce, cabbage or anything that’s hard to digest like raw carrots for example. But after talking w/ my surgeon & a couple other Drs. They say that not true but you do need to avoid foods that aggravate your digestive system that cause you to become constipated. If you have diverticulosis & you become constipated it can become infected & that’s when it turns into diverticulitis. Diverticulosis are pockets that form in the colon walls & when infected fecal gets trapped in the pockets causing the infection. It normally effects peeps in their 50s & 60s or later in life but can sometimes hit people that are younger. I was hospitalized 3 times since February. My 1st bad experience was in Feb. Finally I had surgery this past Monday (my 4th trip to the hospital) to remove the bad part of my colon which in probably 99% of the cases located in the part they call the sigmoid colon. My surgeon said it’s not likely that I will have anymore issues with diverticulitis now that parts been removed. If you have been diagnosed with diverticulosis it’s recommended that you get on a high fiber diet & also I suggest keeping a journal on your meals so that you can pin point any foods you eat that give you issues as far as constipation & once you identify a food that does I suggest you stay away from it. Lettuce really put me in traction as of recent. I was able to eat pretty much anything for years w/ out issue until The diverticulosis started bothering me but I had no idea what it was until I had my 1st colonoscopy performed last October. The dr. Who performed it told me I had it & that I may want to go to a high fiber diet, well I didn’t & 5 months later diverticulitis hit me for the 1st time. One thing though, since I had the surgery according to my surgeon it’s not really necessary for me to go high fiber since the sigmoid section of my colon has been removed. He actually told me I could pretty much eat whatever I want because he said it took over 58 yrs. for it to hit me & he says I shouldn’t have any more issues w/ it. But I’m still very cautious so I’m going to go as high fiber as possible & maybe splurge a bit now & then lol. If you have been diagnosed w/ diverticulosis but not had it get infected you may want to go ahead & switch to a high fiber diet as much as possible & anything you eat that’s not high fiber keep a journal like I said. You mainly want to keep your stools loose not hard. Hope this helps....

Hi LarryLeek,l hope and pray that you make a good recovery,you have been through so much.Take care andGod Bless you xx

Well I think Marilyn will find that very helpful LarryLeek, You explained it well for me to understand and I don't have those problems! I really wanted to say you have been through the mill and I'm pleased to hear your surgery was a success. Best wishes for a full recovery.

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