Autoimmune Disease years after a total colectomy

I've been dealing with back issues for some time. I had them off and on and then, after 3 months of recovering from foot reconstruction, they came home to stay. I am on a strong prescription NSAID and it helps a lot. I keep trying to go off it, but so far, no luck. No one seems to believe it is IBD related, but I'm not so sure. Time will tell.

Jeane when I met with my surgeon a few weeks ago, that is the surgery he explained to me that can be done to remove the disease in the anus that is still there. Hand stitching the tissue to the j pouch. Again; like you, I am not ready for that since I am only 7 months out from the takedown. I don't think my body could handle another surgery like that at this time.
I go to my GI today and see what she has to say. My nights are still tough..depending on what I eat I go 4 - 8 times a day still and the spasms/contractions are brutal still.
I am going to ask about biologics, again. I was on remicaid before the surgeries, it did not help. I am wondering if they would help with just having a little of the disease left. Reading what Jan has to say it looks like it may. Who knows, grasping for anything the may work at this point.

Roberta

I've had problems with my skin and joints in addition to having UC. I'm now able to control the issues with my skin, but the joint pain and stiffness is nearly ruining me. I get it in pretty much every major joint. It started getting bad two years ago, and throughout much of last winter I woke up with excruciating pain in my knees. It seems to dissipate in the summer and come back when it starts getting cold again.

I've used boswellia and fish oil intermittently since I still had my colon, to treat inflammation in my gut and in my joints. Both have worked impressively well for me in the past, although with the fish oil, I was taking very high doses for a while to get the results I needed. Boswellia has worked about as well for me as a high dose regimen of prednisone (yes, honestly) but without the side effects of a steroid. Although, like with prednisone, its efficacy seems to have diminished, as I'm now on it again for I think the fourth time and not quite getting the effect I had before.

Unfortunately, there isn't much quality research (not as much as there should be anyway) on boswellia. I've been thinking about increasing my dosage but hesitant because of the lack of research. I think I'm going to go ahead and do it though because I can't imagine any terrible risks, and right now I don't know of any other treatments I can afford. I might start taking ibuprofen, but I'm hesitant about that, too.

Anyway, I highly recommend looking into boswellia and fish oil if you're having joint problems, especially if you're desperate.

Well this has certainly been eye opening for me. I have been seeing a hematologist since I found out I can no longer get iron infusions to boost my iron stores due to developing an anaphylactic reaction to it. Since seeing him, I have also discovered that my B12 was super low, 131, which I now get injections for. My platelet count is high at 490k. When talking with him over the two visits, and going over all my other random symptoms, he suggested to me yesterday the possibility of RA. He actually brought up to me the possibility of extra- intestinal manifestations of UC. I always knew it was possible but needed him to shine the light on it I guess. My bilateral foot, ankle and knee pain has been worse recently, even had some GI issues that I was certain was pouchitis. I took ciprofloxacin and flagyl and the pouch got better after 3 doses. The joints are just as bad, and worse than they were in the summer. My mom`s sister has RA...and my mom's joints are all a mess, but she never got tested. In recent years, I have developed these little nodules on my finger and toe joints that come and go. They itch and burn on the inside. Eventually going away for awhile. It's like a game of hide and seek.

I was tested for RA about 15 years ago, and was told that I didn't have it. Now, I seriously wonder. Depending on these test results, I may be seeing a rheumatologist before the end of the year. Scared to death of having to go thru prednisone hell again, as I swore I wouldn't ever take it again. I have a severe allergy to sulfa..... Been a tough 24 hours digesting this news of the possible battle ahead.

I had the same problem. About 1 year after my pouch my body hurt so bad it was hard to get up and walk across the room. The act of movement was so painful and stiff. I ended up seeing a rheumatologist. She wasn't convinced it was RA, but the symptoms were the closest and my blood work showed slightly elevated levels. So I ran the steroid course over and over again for about 1 more year. We tried methotrexate, and it didn't help. Finally we tried Enbrel, and it worked good for a little while, but they moved me to Humira and it was the trick. I was able to taper off of it and only take it as needed. Over time it became less and less. Now I haven't needed it for well over a year. It was my saving grace.

Now I'm having other issues but that's for another post lol.

Hadn't anyone tested your B12? It's supposed to be up to 1,000 or something like that! I'd also like to suggest your rheumy might want to test you for fibromyalgia. Not just because I have it but because a lot of what you are describing happens to me. One is more muscle related and the other joint but when they are in the same area...who knows. Do you feel run down and tired all the time? Well of course you do because of the Iron, but it's a fibro chronic fatique symptom. If you look it up you can see 18 trigger points and actually sort of test yourself for fibro.

My rheumy told me where my arthritis is and said it wasn't the bad kind people get with UC, is that RA?

Her, the foot doctor and finally a neurologist keep saying my foot problems aren't fibro related and the current thinking is it's neuropathy which is not reversible. I'm taking a medication that helps with the tingling part not the numbness and pain, like some days my big toe hurts more than others, and I don't have gout. The last several weeks the problem has moved up to my hips and my feet are not as bad. During flares it decides where to attack and you almost never know what to expect the next day.

My BFF has nodules on her hands that are related to a different autoimmune disease that isn't RA. She also has something that causes little bleeds internally which makes her anemic and they just had to go in and cauterize six places - she doesn't have IBD. I'm writing a lot to say to please have the rheumy test you for any autoimmune disease you could possibly have. It took her forever for them to figure out she has at least 6 overlapping autoimmune diseases.

I hope they have tested your thyroid and vitamin D as well. I had an under active thyroid before UC and there were several times it was hard to get it regulated. It took 18 months after my take down to get it under control this time.

Take care

No one had checked my B12, because I hadn't complained of the fatigue, until I went to see him (pcp) to see about by Iron values. I had iron deficiency in the past and my symptoms were the same, fatigue, cold, hair loss. Never thought of B12. I haven't seen a Rheumatologist yet, I am waiting to see about the lab results first. I am already being treated for hypothyroidism, and my values are good, they have been checked twice in recent weeks. My symptoms now are definately joints, more than muscular. I just chalked it up to plain old aging process and the fact that arthritis ran in my family. I'm only 45, and had my jpouch created when I was 18. So, no, I didn't see a correlation. Thank you for your thoughts and suggestions! Still trying to digest it all....

That explains it all. I forgot you've had your j-pouch so long, dah. My PCP tests me for B-12, D, thyroid etc. every 3 months as I was so ill with my UC before the operations 2 years ago. I had to take iron right after the surgeries.

Please let us know what you find out.

So, my B12 went from 131 or 134, don't remember to 232 after 2 B12 injections in 6 weeks. My iron is still low. My RA factor was 8, so not negative, but not definately positive. At least that's what was explained to me by the RN that called with the results. She said, "Everything is normal!" When I stated to her that 232 isn't normal, that there is still a risk for long term and irreversible neurological damage with a B12 under 500... She wasn't too happy that I wasn't dumb and didn't just accept her answer. When she told me my iron was normal, I asked exactly what ALL my numbers were. Then she realized she was wrong and that I was still anemic. Wish the MD had been the one to call me. Oh well, off to relax for a few days before the holiday. I see the Hematologist again on 12/31, and we will have a lengthy discussion... I forgot to ask about the results for pernicious anemia. Thank you for your help with this!

Hi ladies

Thanks for this thread, I too had collectomy, jpouch, j pouch removal and still get joint pains. currently also have a perineal vaginal fistula which may have been a result of having my pouch removed. As for the joint pains when I was flaring before my surgeries my knees use to swell and where really painful, I also spent a couple of weeks in hospital for septic arthritis on my right hip. Years later I am still suffering joint pain especially my lower back , my old gp use to say it was sciatica and I was referred to a physio, who couldn't quite say whether it was or not. Eventually after increased pain my gp booked an xray which showed mild scoliosis (curvature of the spine) and also screlosis on my sacro illiac joint which they believe to be caused by ibd related arthritis. I have recently moved so have a new gp who I'm hoping will try to investigate further my joint pains as my old gp didn't suggest anything but an osteopath, but then she didn't refer me due too my moving out of the area. She mainly focussed on my fistula and put most of my pains down to that.
It never seems to end does it ladies.
Keep us posted.
Take Care
Shelly xx
Hope you all have a great christmas !!

My Chiropractor x-ray'd me a few months ago as it had been 7 years. There were changes including arthritis in my neck and lower back. She didn't take any of my lower body. The rheumy I went to last year just did a physical exam in her office and said I had a little arthritis in my lower back and knees and that it wasn't the kind related to IBD. I also have fibromyalgia which affects my shoulders and neck so I have a perfect mess there.

My Chiro is also a nutritionist, that's what her BA is in. She has helped me more than anyone managing my supplements and vitamins. The nurse or doctor may tell you your D, for example, is ok when it just gets into the normal range or 40 or so. My Chiro keeps her level at around 90. The last reading I had mine was 62 so I've increased the amount I take every day. At first my Internist thought I was taking too much but hasn't told me to reduce it and appears to be on board. She, Internist, was the one that initially put me on some prescription strength doses of D because it was too low.

Another level came back "normal for my age". Just because it's normal for my age doesn't mean it is enough to optimize my health. Although I have much bigger problems than that one.

It is hard to find a good chiropractor but if you can it might help you to get regular adjustments. Osteopaths take a semester or two of adjusting whereas that's all Chiro's do and therefore they usually do it better, IMHO. I had a D.O. 25 years ago that adjusted my twisted ribs, from an athletic injury, but for every thing else, needing adjusting, he referred My husband and me to a Chiro.

My Chiropractor is also has extra training and is an Atlas Chiropractor. If you could find one of those in your area I think they are better. My nephew is a regular chiropractor and he is excellent so I'm not saying you have to have an Atlas one. (Too bad he lives 2,000 miles away from us.)

All of this is to also say that there can be several problems going on at the same time around the same body parts. I have fibromyalgia where I also have joint problems thus it is hard for me to tell the difference between joint and muscular pain in certain instances.

I seem to be much more prone to any virus that is going around than I was before my j pouch. Since so much of the immune system is now considered to be "in the colon", can I assume that there is a connection? Any idea whether stool transplant, etc would help with this? Thanks so much, folks, and try to have happy holidays

What are some of the side effects of Humira?

Late to the party, but I have some kind of blood clotting disorder they think is probably related to autoimmune. I had clots build up in my leg and flood my lungs 8 months or so ago. I've since learned that while uncommon it isn't unheard of for crohns/colitis patients. I think liver and eye issues can also pop up. apologies if someone mentioned this earlier, i've just skimmed most of the posts. Just wanted to get the info out there.

But yea, I've also had issue with my back so I'm with you all there.

I was diagnosed with fibromyalgia twenty years ago. UC ten. I'm now on four months with my Jpouch. I've just started with finger and feet pain. Very different then my fibro pain. Feels like I have rubber bands on my hands. Saw doc today and he told me about everything you are discussing here. I really don't want to go back on any drugs... Has anyone found anything over the counter that helps? Glucosamine or magnesium etc?
Still waiting on blood tests to come back but let's face it,once an overactive immune system, always an overactive immune system

Alison B,
I take Fibro Malic (has lots of magnesium) for my fibromyalgia. I have no idea if it helps it as my fibro is really bad but when my doctor's office staff recently called with my blood test results she said my magnesium was good. I also take 5,000IU vitamin D and again it tested at 62. I overdid the B12 as it was twice the max it should be, oops. So you can take too many of a supplement.

Please go see a Neurologist! By the time I got to one I had neuropathy in my feet that is permanent. It started out bothering me somewhat like you are describing. I also developed pins and needles feelings which he prescribed medication for and it worked to get rid of those feelings. He has yet to figure out what has caused my neuropathy but we are watching for signs of it spreading to my hands. There are reasons, like Flagyl use, that a specialist can explore with you. As I said above the specialists were all blaming each other's specialty for the neuropathy problem and no one "diagnosed" the problem as neuropathy until I went to the Neuro. He diagnosed me with a physical examination, a straight pin, and having me walk in certain exercises.

Take care

How long have you been on biologics? I have been thinking of going on them, before giving up on my j pouch....have you ever had an ileostomy? Do you think that removing the colon creates immune system problems? (I seem to have them now, never had them before) I did not have Crohn's or UC....

I can relate to the joint problems (although I have osteoarthritis on one side from auto accident)..has anyone else been diagnosed with gout, since j pouch? I also have hypothyroid (since I was about 10 yrs old--it runs in my family).

My sister has had breast cancer, and my father died of brain cancer, which makes me nervous about the biologics, but the ordeal of having another major surgery to remove the j pouch just sounds like more than I can handle right now....sorry so many questions (I dont post very often..lol) And thanks!

Yup, I am with you all.
It is a never ending cycle. I always had back and hip pain but post collectomy and creation of my k pouch I became dependant on NSAIDs...I have been on everything from motrin to robax to naporxin on through...I presently take 2 naporxin 275/day and double the doses when I can no longer get out of bed.
I had severe achilles tendonitis for 5 yrs and nearly ended up having surgery but they did daily physio for 6 months and put me in a splint. To 'retrain' the tendon they have you wearing very high heel inserts (about 5 inches...Which kill the hips!) and every month you take an inch out until you can finally walk flat after 6 months).
I get tendonitis with any repeated movement so it can be elbows, ankles, shoulders or anything else.
Right now it is my left elbow, right hip (which has chronic sacroilitis) and neck...I now carry a backpack instead of a normal purse because it puts less pressure on my joints (the weight is diffused that way instead of on just one side) and wear silicon inserts in my shoes to avoid the micro-shocks of walking.
My 2xs/day walks go a long way to keep me from rusting. I wake up like a 90yr old but by the time I get to work after walking 2miles uphill, I actually feel better. My inflamation responds well to exercise.
I also find that certain foods irritate me even more...carbs seem to be my enemy eventhough I crave them...I have been trying to sever myself from them and can see a difference altough not huge every little bit helps.
I think that once you've got an autoimmune you have it for life and it will get you no matter what you do...all you can really do is fight the good fight and find little tricks that help make things bareable...I take hot baths, changed my mattress and sleep with 5 different pillows that I place under my knees, hips, elbow etc (yes, I look stupid!)...But it helps.
Please share any tips that you might have that help you too...I am interested.
Take good care
Sharon

Me too. I think the hardest part is the different stories / diagnoses you can get from different doctors. And their differing approaches toward this manifestation of our faulty immune systems. It's encouraging to see others get medication / treatment that helps resolve things, but discouraging to me since I have not had anyone willing to go farther than, "Well, I'm not sure if it's inflammatory, osteoarthritis, or fibromyalgia, but I'll treat you for fibro..." - and that's the doctor who tried to convince me that NSAID's couldn't possibly be causing low hemoglobin levels. The others won't even go that far.

Quite frankly, I'm tired of having so many doctors. And from feeling like I need to go find a different one in one area because the current doctor isn't doing much to get to the bottom of things - just trying to treat symptoms in their specialty. It takes too much time, and I guess I'm content to put up with the pain and treat it however I can (sulfazine, lyrica, NSAID's - occastionally, and even other meds - occasionally).

Other treatments - massage, chiro - help, but are expensive and time consuming. So I'll just keep up with my routine of stretching 2-3 times a day and try to get back to an active swimming routine, which does seem to help over the long term.

Good luck to everyone in this regard. I wish they could do genetic research so they could definitively say, "Yes - IBD is related to this gene, and here is what will happen in the body without a colon to pick on..." That way, those of us with symptoms, could get treated consistently.

Steve

I agree with you ElmerFudd. I'm tried of all the specialists as your mom says, one for every body part almost! I've had some, I don't want to call it luck, whole person analysis at Mayo lately. I've been seen by 3 different departments and they like to tie everything together, along with my other parts that are taken care of locally It is better to see how afflictions/diseases/syndromes/pain are related to each other. Net result is I'm now taking one medication to take the place of 2 and it is helping a third area or part, 3 for 1 benefit. Any time I can take fewer pills I am all for it. Plus I'm feeling better.

My former neurologist hadn't bothered to look at my entire diagnosis when he prescribed one of my medications. Either that or he didn't care if the medication produced a common side effect.