Ileostomy and Joint Pain

Hello from New Zealand. I had an ileostomy 10 weeks ago, due to ulcerative colitis not responding to any drugs.

Within about 4 weeks after surgery, I started to suffer joint pain, knees, wrists, thumb joints.

I asked the doctor and he believes because I still have an anal stub, the joint pain is from what UC is left within the anus and rectum.

Has anyone experienced this and if so, how did you manage the pain?

UC inflammation can cause joint pain and skin issues, especially if you're having a flare-up. The inflammation in the body shows up differently throughout the body. Joint pain was one of mine before having my surgery, but I had a total colectomy so I do not have the inflammation anymore. You're on the right path to consult your doctor for methods to reduce the inflammation and see if any UC is present in your remaining intestinal tract.

Hi, I have Crohn's. My colon has been removed except for my rectal stump and anus, which I opted to retain so as to spare my erectile nerves.

So it's an ileostomy for me.

After just under a year post-op, I started to get mucus from my stump, which was a bit of a surprise but easily managed now I'm used to it.

Also, I get a flare-up now and then about every couple of months which causes pain in my stump, a bit of bleeding, and severe joint pain.

For me, the answer has been about 2 suppositories of 2g Mesalazine for the stump and Voltaren tablets for the joint pain.

I'm back to normal in a day or two.

Hope this helps a bit, cheers Ian.

This may or may not be something you might consider. It's just my personal opinion I frequently "spout off" about - unlike my political opinions which I never share or spout off about.

Regarding your question about joint pain.

Your body has been through major surgery and it will take time to heal. Took me 2 years.

I was extremely fortunate that my ileostomy was the result of an orange-sized cyst that ravaged one ovary my appendix. All were removed and NON malignant.

I had no indication it was in existence. It was on the outside of my colon and the surgeon advised me that even a colonoscopy would not have revealed it. I must say though, about 10 years earlier I went to my doctor as I was having pain in my side. I was told (without any tests) that it was a spur on my spine and was sent home with painkillers which I never took but took Advil for a short time. I do try to avoid medications like the plague. It only lasted about another week and then magically went away. Fast forward to 2020 at age 76. First mild pain which became unbearable and my husband drove me to an emergency room in the north woods of Michigan (we were on vacation) where they said I had muscle spasms and sent me home - with pain pills...this time I took them and they did not help. Back to the emergency room and then a 2-hour ambulance ride to a major hospital in Wisconsin where they did my surgery. I was in the hospital for several days and then prescribed MANY different drugs. They gave me the written prescriptions and a schedule for taking them (all different times and amounts) and said I could get them filled at the hospital drug store on the ground floor, which I did.

After arriving home in the evening exhausted and unwell my husband and I sat down at the kitchen table and tried to decipher these drugs, instructions, and times.

Which pill? What time? Not at the same time, with food, without food, What's it for? Many questions in my time of confusion and exhaustion- I just wanted to go to bed. It was all too much for me mentally- having never taken drugs (no birth control, no hot flash control, no cholesterol control blah blah blah). So I shoved all those pills to the middle of the table and told my hubby I wasn't going to take any of them and went off to bed. Shortly thereafter, I flew back to Florida and follow-up appointments resulted in my having to take a few drugs - but that was "short-lived" because they were affecting my well-being...again I quit all medications to my doctor's dismay.

I do realize medicines can be life-saving and totally essential for some, but they are not for me. I also realize this could change depending on my situation and at my tender age I would consider all of my options with my eyes wide open and hopefully my brain fully engaged.

Fast forward - I am about to turn 80 in a month and even though I have been told I can have a reversal I have chosen to go on without being reversed. My reasons for not going forward can be summed up in a few words:

Numerous tests to prepare for surgery

Surgery itself

Low confidence in physicians

Hospitals

Drugs to recover (?-necessary)

No significant guarantees of success

Time spent

AND

MOST IMPORTANT- although I sport a stoma

I am currently physically well and pain-free

MY SHORT ANSWER

If you were unable to stay awake through my diatribe my short answer would be - research vitamins, over-the-counter meds and all prescribed drugs-

I know we trust our doctors to know this but do you really believe they can know or remember it all and constantly be up to date in our ever-changing drug world?

Some Vitamins and statins are known to cause problems such as aching joints

jb

You speak my language. I dislike prescription medications and have had numerous horrible encounters with doctors, mostly in hospitals and private practices. I'd like to talk about our situations... if you are willing.

This reply goes out to Kiwi Al. from New Zealand. I am in a similar situation. This is arthritis I believe you are talking about in thumbs, knee, joints. I have had an ileo since 2016. The doctor left the stump- 6 inches maybe- in hopes to reconnect. My entire large intestine had been removed at that time. I am 62 yrs old. Developed UC at age 25. Back then and still to this day Prednisone is/was the choice to heal or rather "go into remission".

Since age 25, was not able to ever stop prednisone. To this day, I am taking other meds in an effort to taper prednisone to a safe "maintenance dosage". The lowest I have gotten was 7.5 mg daily. while on sparring drugs. Currently at 11 mg daily. Let me tell you this, once I tapered prednisone, and every time I did, the arthritis reared its ugly head. To say the stump inside me or you has any effect on the joint pain at first seems unbelievable. But it might be true. It is the ROOT of this evil for us both right now... I will let you know once mine is removed which surgery is scheduled soon. Put me on your fav list cause I also want to hear from you and what others think.

Frankly, I think any inflammation in our bodies is from UC or Crohn's disease (CD). And I feel it is in you forever. I have heard from a friend who went through the complete removal of colon and has the stoma bag that, he is cured of IBD.

I want to separate fact from fiction but the fact is really no two people are alike in this illness. It saddens me we cannot have concrete answers, just a general idea and hope for the best.

Whether or not removing the diseased organ where it is, stops inflammation remains to be seen or documented fairly. My concern is, does it move elsewhere in the body?

About 30 mins ago, I posted a thread on ken and barbie butts- post op. I am hoping for an answer there about removal of the rectum and anus- stump--- if it cures. There will be answers.

This is a great site for good honest answers from people having IBD. Keep in touch. - Warrior

I had a colectomy about 4 years ago due to Crohn's and have an ileostomy. I have the same issues with joint pain and skin and eye dryness and irritation. I now take Vit C, E and cod liver oil and find that, although not a cure, they do help.

Ps, I tried cannabidiol but it nearly blew my bag off!!

 

 

It might be worth a try, good luck.

Remember, Crohn's and colitis are the "gifts that keep on giving!!"

 

So true. The arthritis and skin issues are all a part of our lovely ulcerative colitis / Crohn's lives. I only have a very small amount of my rectum left to attach to a J-pouch internally and otherwise have had a total colectomy since 2006. I'm 48 and the arthritic pain in my joints, spine, neck, ankles are definitely all still related to the autoimmune issues that got me to this point - thought years ago with the total colectomy all would be magically cured … definitely not the case. Vitamins are a definite must- especially B, D, K (to help us absorb the vitamins we take) and I take magnesium at night (it can increase stool output but I can't sleep without it because of leg jolts etc).
What makes this ongoing disease so hard is not being able to eat the healthy helpful foods that our bodies need to help all these other issues the diseases cause. I'm having a really hard time because everything says to help this or that, naturally, eat vegetables (and they tear me up. Cooked and raw.) I love them but can't eat what will “make it better”. So vitamins are the best option to help get the nutrients we need. This is a vicious cycle of a chronic illness that many don't understand. Good luck- try to stay hydrated, eat as healthy as your body will allow you to, and supplement with vitamins as much as you need to/can.