Autoimmune Disease years after a total colectomy

Yes.....I have severe joint and muscle pain since removing my colon over a year ago..pains I never had when I still had a colon. I also have lower back pain that is pretty severe. My GI has told me the same thing that yours has. The inflammation is still occurring somewhere in the body now that the colon is removed. Mine also impacts my pouch and I am hoping to be able to hold on to it due to this. I am sorry prednisone is the only thing that seems to be helping you. I know how debilitating chronic pain can be for many of us.

HI, I am sorry about your pain but at least I know im not the only one. I started taking sulfazine yesterday, so I am getting off the prednisone in the next couple of weeks, but i have only been on it 2 weeks. Hopefully this medicine will do the trick. How are you doing with your surgery? And what does your Dr. recommend?
Sharon

Sharon,

I have started pentasa for the pouchitis and hopefully this will also help with the althragia pain. I think the antibiotics also tend to make my muscles and body ache. The sulfa should help you. I was on it for years with my UC and maybe that is why my pains were never as bad as they are now.

I, too, have joint pains and constant lower back pain. Additionally I had uveitis two years ago, and the doctor was quite sure that it was from having UC, as it is an autoimmune disease. That took six months to clear up, with severe eye pain and lots of different eye drops, including prednisone. I am sorry for your pain and discomfort, both of you. Sally

Thank you Sally I appreciate your input. Which one of your joints hurt the worst? mine is my hips, and my thoracic vertebrae. my elbows recently just started. Im glad to hear all these doctors are on the same page.

Hey ladies-
I can totally relate. I always had supposedly "IBD related arthritis" when I was in a bad UC flare. But now, I have horrid arthralgia even after getting the jpouch ripped out. My doctors now think I have some other kind of autoimmune disease going on. My PCP did some bloodwork which was concerning and Dr. Shen did a huge panel of fancy autoimmune and genetic marker tests which didn't come back with wonderful results. Needless to say, I am now scheduled to see two rheumatologists later this month, one of them is the "dr. shen" of rheumatology at CC.

Sharon have you had specific bloodwork done for rheamatoid arthritis and other markers like sjorgen? Have they investigated whether it truly is IBD related arthritis? Are they sure its not something else? It might provide different treatment options. My concern is the same as yours - absolutely no to the prednisone. And for me.. I am allergic to sulfasalzine. So what are the options then?

Hi Liz, I had every blood test there was. There was an inflammation somewhere but all the test came out negative except one of them which showed there was inflammation. All the arthritis test were normal. She said the proof was that when I took the prednisone the pain went away so that proved my old colitis autoimmune disease was attacking other parts of my body, which is my joints.

We could be twins...

I had my colectomy in 1995 and developed low back pain (sacroiliac) along with intermittent knee, hip, elbow, shoulder, wrist, and finger pain. Initially, I just figured it was due to the severe flare that led to the colectomy, and it was masked by all the prednisone I took trying to get into remission, because things got better. This became more of a steady, debilitating thing about 10 years later. After about six months of feeling like a wimp, I was referred to my rheumatologist.

After hearing my story, reviewing my history, and ruling out rheumatoid arthritis, osteoarthritis, lupus, etc. by having all negative blood work, she came up with the diagnosis of enteropathic arthritis. I had been eating Motrin like candy and did pretty well until I developed liver inflammation and pouchitis. I was already taking Azulfidine with minimal improvement. Next step was biologics, as there really isn't anything inbetween NSAIDs and heavy hitters like methotrexate and biologics. They worked pretty well, and I am currently on Simponi. I still get flares, which usually calm down with a couple of weeks of NSAIDs or prednisone.

Like you, the only positive test has been inflammation markers, CRP for me, which was moderately elevated.

If you want more info on enteropathic arthritis and other spondyloarthropathies related to Ankylosing Spondylitis, you can go here:
http://www.spondylitis.org/about/ibd.aspx

One thing that is interesting is that things like Achilles tendonitis can be related to ankylosing spondylitis, as one of the symptoms is enthesitis. This is inflammation of the insertion of tendons and ligaments into the bone. I have had bouts of what I thought was routine tendonitis since my early 20s, including Achilles tendonitis and never knew they were related.

My hip is killing me today, and I just may have to go see my rheumy about it, since I have done the 2 week course of prednisone and am currently taking Relafen.

Jan

Ouch! It's no fun having that pain. . . sorry ladies. Shea, you asked what joints . . .mainly hips and shoulders, but my back pain is constant. Plus, I am sixty, which I am sure doesn't help. Good luck today, Jan.

Sally

wow jan I also had foot surgery a couple of years ago for severe fachitis. I couldnt even walk but am 100 percent now. Yes we sound like twins hahaha thanks for the website info. Keep in touch I will let you know how this sulfa works.

Me too! On methotrexate with moderate to minimal control. Exercise/stretching helps.

Jan I just looked at that website wow thanks so much for the info!!!

Thanks DMP I wish you well!!

Oh my Gosh!!! After reading thus and having been going through whatbImhavebthe past 1-2 years is really sort of describing what Imhave been going through!!

I had my original surgeries (procto-colectomy with ileostomy and jpouch creation) in 2004 and takedown in 2005. Zero issues for 5 years. I started having increase pain, pressure, body aches, etc., so I started taking NSAIDS like candy. I ended up in the hospital with a partial obstruction/stricture and severe pouchitis that extended above the pouch.

After a dilation and every test in the book to see if I had RA, Lupus, Crohns, etc., it was found that the NSAID use was causing the pouchitis so no more NSAIDS. the past 2 years I have been fighting cuffitis, body aches, joint pain, anal/rental pain (severe), numerous dilations, etc.

Most of you are aware of all of this because I have been posting. Suddenly though, after reading this thread, it seems to be making some sense!

I just had another dilation and my surgeon says things look better than last time. Since i am still having the god awful pain, and all over aches and pains, what you all are describing mars sense. My next step is to continue manual dilations with the Hagar torture device and continue on the same regimen of meds, except he wants me to stop the canasa for 3 weeks and do the cortifoam enemas twice a day instead of once for those 3 weeks.

My GI is VERY open to any suggestions and has colleagues who she speaks with about jpouch, immunosuppressant drugs and cuff issues. I am going to discuss all of this with her and see what she says. I'm thinking this may be a possibility for what I am going through!

Thanks ladies and I will be in touch!!

Alex

I think a colectomy is only designed to cure you of ulcerative colitis, which is just one of multiple potential manifestations of autoimmune disease. It is not designed or intended to, nor can it, cure you of autoimmune disease, because that defect originates in your autoimmune system which is not effected by the colectomy. If there is some defect in it, which is causing an abnormal immune system response in your body, it will still be there after colon surgery, whether or not it openly manifests itself as AS or some other disorder.

quote:

I think a colectomy is only designed to cure you of ulcerative colitis, which is just one of multiple potential manifestations of autoimmune disease. It is not designed or intended to, nor can it, cure you of autoimmune disease, because that defect originates in your autoimmune system which is not effected by the colectomy. If there is some defect in it, which is causing an abnormal immune system response in your body, it will still be there after colon surgery, whether or not it openly manifests itself as AS or some other disorder.

Yes, 100%. Said she with Ankylosing Spondylitis and Uveitis post-colectomy. My colon was removed but my immune system wasn't. The colon wasn't the primary problem, it was just in the line of fire of my immune system.

Well, for some people, it is a cure, others not. You just do not know until you get hit with something else. Perhaps if they get better at figuring out the subtypes through genetic testing, they will not only be able to determine who will respond to various therapies, but who will be more likely to manifest with extraintestinal disease after colectomy.

It does not mean that colectomy was pointless, unless your sole purpose was to not take medications. For most of us, colectomy was inevitable and necessary. I know without a doubt it was for me.

Jan

Yes Jan I agree, i wasnt even thinking of the future when I got my jpouch, It was a life or death choice for me. I would of never thought I would be attacked in other places 20 years later. Well I will wean off the prednisone and take this sulfazine and see what happens. I am feeling better than I was. Thanks for all your help!!!

Wow, this is certainly a thread that I can relate to. This is exactly what has been happening to me! Joint pain in the hips, elbows, hands and knees and feet. Never had it before and if I did I was able to tolerate it. I look like I am 100 years old in the a.m. and then as the day progresses, along w/movement I am feeling better and moving better. I have explained this to my GI and surgeon and they have stated there is a reason for a colon. This thread makes so much sense. You remove the colon but the autoimmune disease attacks somewhere else in the body. Can we (UC and Crohn's patients) ever win? I am only 6.5 months from take down and now this is the fun I have to look forward to more pain! Very informative post! I thought I was going nuts or embellishing this pain.

Roberta

I can't believe the shoulder and arm pain is IBD related. Anyway, what kind of doctor do I see to find out what is causing it and to hopefully get some relief? Where to begin?

You probably need to see a rheumatologist, and even then, there may not be enough in the way of symptoms to be able to make a firm diagnosis. But, if you have long standing symptoms of tendinitis that come and go, particularly if they tend to coincide with IBD flares, you may want to see a rheumatologist. Azulfidine may help with peripheral arthritis that is related to IBD, but axial arthritis (sacroiliac joints, spine, hips) tends to follow a course independent of IBD and does not respond to Azulfidine very much. You pretty much have to have sacroiliac joint pain to be diagnosed with spondylitis, and that pain needs to have been present for at least three months.

Jan

I am sorry everyone is suffering from joint pain as well, I just thought I was extra unlucky. Had my final surgery in June (total colectomy and jpouch) for severe ulcerative colitis. I have been having severe joint aches and looking for any natural remedy possible. Of course nothing is working and I really don't want to be on prednisone ever again....I'm adjusting to my jpouch but now dealing with horrible joint problems.

I was on sulfasazine for over 20 years continually for my UC and did have slight joint pain at times while on it but nothing severe. Since jpouch surgery and discontinuing this medicine I ache continually, so much that it often brings me to tears. The pain is throughout my entire body; arms, legs. and back. I am going to call my Gi today and discuss starting this medicine again as I literally feel crippled by this pain. Maybe it is an option also for others who are also dealing with this issue.

I resumed sulfasalazine a few years after colectomy due to cuffitis, but it didn't take care of my neck and back pain, and only partially helped other joints. But, it is one of the first line treatments, if you don't have sulfa allergies.

Jan

UC isn't always the first autoimmune disease/condition you get. I'd like to add Thyroid, GERD and fibromyalgia to the list of suspects as I have them as well.

Fibromyalgia can cause all over body pain and I've been in what I call a constant "flare" since my surgeries. I guess I'll quit hoping it will get better as my original surgery was over 2 years ago and I'm almost at 2 years since my take down. My fibro also involves chronic fatigue. It involves the connective tissue between your muscles and bone. I get a massage every other week and she works out all of my fibro "knots" while massaging me.

My under active thyroid went crazy after the surgeries as well. It took 18 months, post surgeries, to get my thyroid and medication stabilized. My Mayo GI says that thyroid problems can affect GI problems, including j-pouches.

When my GI diagnosed my GERD he told me that many times it goes with UC.

My blood has also been tested for Sjorgrens which I'm glad I don't have, yet.

Somewhere along the way I've also ended up with neuropathy in my feet. This happened gradually until now my feet are mostly cold and numb. I also have other pain associated with them. The neurologist recently told me it can not be reversed. I don't know what caused it and hope to find that out soon so it doesn't get worst or spread to my hands or other parts of my body. There is nothing, medication wise that helps and I have to hold on to railings, walls and whatever going down and up stairs as I've had too many times when I've slipped as my feet can't feel the stairs. It has also affected my ability to drive as it is hard to feel the pedals. I don't drive much anymore and mostly just around a 6 mile radius of our home, where everyone is going slower. I can not even stand to do yoga. The rheumy suggested water exercise classes. My husband and I bought a 3 person therapeutic hot tub as it is the best thing for my feet and fibromalgia. I also get acupuncture periodically too, plus have an adjustable bed with a foam mattress.

I have dry mouth and eyes, reason for sjorgrens testing. It's caused, we think, by all of the medications I'm taking. My gums have receded and they won't get better so this has exposed the roots in a lot of my teeth - ouch. I use Biotene' tooth paste and mouth wash several times a day, along with an electric toothbrush and electric waterpik. Good thing I need to drink a lot of water anyway there. The color of my teeth has yellowed too and I'm not going to do any whitening treatments unless convinced it won't hurt my gums or weaken my teeth.

I'm sure I left something out but you get the drift. I've also found out I just have the regular normal arthritis and hope I'm done picking up these up. It takes too much of my time dealing with everything that is wrong with me, including depression, anxiety and PTSD. I'm disabled and am now collecting social security disability benefits. They have classified me as not likely to improve. I go to weekly mental health therapy too.

To quote one of Wyonna Judd's songs -- When you hit bottom the only way too go is up or sideways..... I sure hope I've hit bottom as I don't want to deal with anything else!

Well, this is certainly the right site for me. I can't believe all the joint pain associated with getting rid of the colon. I know we are all different but the joint pain sounds all the same. I even have trouble getting out of a car at times. This hips/back don't want to work. So, I look like I am 100 getting out of a car.

It's almost as if we have to stop the inflammation from attacking everything. How do we do that? I thought it was food related, at first but can not find any triggers. I wake up with the pain and during the day have the pain and when I finally lay down I get some relief until I move on my left or right side. It even wakes me up out of a sound sleep along with still having to go #2.

If it is not my butt, back, elbows, hips, hands, legs and feet that are in some type of pain. I keep telling myself it will get better! Not sure when or how long it will take. Stay tune...!

Roberta

roberta.. if the pain is that bad I think you should see a rheumatologist. I have always had bad joint pain with UC, then with the jpouch, then even worse when on antibiotics with the jpouch. But for me, after having the jpouch removed... joint pains are still ongoing. I'm seeing a rheumy in a few weeks as now my docs may be thinking its some additional autoimmune disease and not just IBD related arthritis. Little frightened though because I'm allergic to sulfasalizine and I'm so done with prednisone.So just don't know what they expect to treat me with.

Jeane.. for me.. certain antibiotcis cause me severe joint pain. With cipro for example.. I could barely even walk. same with several other hard core antibiotics for me. Wondering if antibiotics might be causing some of the joint pain for you?

Yes Liz I'm certain of it. Never had this pain before antibiotics and dr Shen conferred it could be antibiotics. Feela like poison being injected in my veins and it then enters every tissue in my body.

My life turned around with biologics. I responded well to NSAIDs too, but after years of them, I just could not tolerate them. I now just use them for two week courses when I have an acute flare.

The biologics and minimal use of NSAIDs also resulted in reduced inflammation in my pouch and rectal cuff.

Jan

Liz11- I am allergic to the sulfasalizine as well. I go to my GI on Monday and see what she has to say regarding all my pain. Still on and off a steroidal suppository for now.

Jan you take biologics even with having the j pouch? What is the med that you are on?

Jeane how are you doing any better?

Robera

I started with Enbrel, which helped a little, then I was on Humira for 5 years. It worked pretty well, but I had to do weekly injections. I switched to Simponi about 18 months ago and I'm quite pleased with it. Monthly injections, and they don't sting like the Humira. It is not approved for IBD, but it has been approved for ankylosing spondylitis for about two years. It is in clinical trials for IBD. My GI says my pouch has never looked better since I've been on it. The monthly injections make it easier for me to travel.

Jan, how do biológica Belo? I never heard of them before this group. thanks....you must feel very knowledgable and extremely helpful because you are! Very grateful always, Sally

Sorry Sally, but I'm not understanding your question. I know there must be typos in there, but can't figure it out.

Jan

I think my phone liked typing the words "biologico belos" instead of biologics work!! LOL! Darn phone . . . gets me in more trouble. Have a lovely Sunday!
It's cold here in Big Bear!!
Sally

I have the same issue often when posting using my iPhone ESP if I do not have my glasses on like right now !!!

I shut off the auto correct on my iPhone and iPad, it annoyed me so much (go to your settings> general> keyboard). I still have plenty of typos though from the virtual keyboard....

Anyway, biologics work by blocking specifically targeted proteins that promote inflammation. All of the older ones target TNA-alpha (TNA is tumor necrosis factor). Newer ones in the pipeline may target other, even more specific proteins. So, unlike steroids, they do not suppress the entire immune system. TNA-alpha is implicated in a number of autoimmune diseases, including IBD and inflammatory arthritis (rheumatoid and AS in particular).

They are expensive- $2500-3000/month, and can lead to reactivation of dormant infections, like TB, and there is a question about possible increased risk of non-solid cancer (mostly lymphoma, but recent data shows no increase in rates, as those with RA are at increaeed risk already).

Jan

Whoa, that's news to me, and definitely out of my reach. But they helped you. . . you must have really needed them. Sally

Roberta,

I am struggling like you. I have reduced my cipro from 1000 mg a day to 500 mg a day (cut one pill in half and take twice daily) and stopped pentasa. I am still using canasa twice daily, as well as sparingly throwing rectal steriods in between to hold me over to next canasa dosage if I am really uncomfortable. After talking to Jan today I am going to ask for a refill of my sulfasalazine. I took it for years with UC and never had lower rectal issues ever. I am sorry you cannot take it but there are other meds you can try that remove the sulfa compound.

This is no picnic, but I fear pouch advancement surgery more, especially as a lot of my issues are in the ATZ (lower anal area) and I am not convinced advancing my pouch is going to correct these issues. I also fear the mucosectomy and incontinence risk as well as just dealing with two more major surgeries that really have no guarantee of success.

Of a final note, one other board member was warned she may develop strictures after pouch advancement surgery. Maybe Jan can comment on
this as I am not sure how you develop a stricture without a cuff to staple the pouch to.
Possibly the mucosectomy and handsewing the pouch can also cause stricture in the lower anal area as you are once again stitching tissue to tissue and scaring and narrowing can develop. I am not sure how low in the anal canal they stitch your pouch when they advance it and do they really remove the 2 centimeter cuff or leave it in place and just scrape all the diseased tissue?

Seems to me Dr. Remzi indicated there are many ways to do pouch advancement surgery where some surgeons just scrape and possibly do not advance the pouch versus others who remove the cuff, scrape and also advance the pouch and handsew it. It is still a bit confusing to me even after researching it.

Oh, I don't pay that price for my Simponi, that is the retail (but the reason they don't want to prescribe it- costs the insurance company a bundle). I have zero copay after our family deductable of $3000/year.

Yes, you can still get a stricture with pouch advancement. That is because there is still an anastomosis and the potential for scar tissue formation, no matter how it is done. Strictures are scar tissue that goes all the way around the intestine. If you had a larger rectal cuff left because they could not reach with a shorter one, it may be that advancement is not possible. Lots of things to consider. If they just scrape the mucosa, that is just a mucosectomy, not pouch advancement, but it could solve the problem. No guarantees though, since it can grow back.

Jan