IBD, Jpouch, and IBD related arthritis

I can relate to your discomfort. I am sorry to say that I have been dealing with this issue and it has worsened since jpouch surgery. In my case, I currently have a very inflamed rectal cuff (more inflamed than ever with UC) and minimal pouchitis, so my surgeon believes this is contributing to my pains. I have had these symptoms for just about the entire time since my takedown 16 months ago and have been complaining about them since then. I am also seeing a rheumatologist also and I am having more extensive blood work done tomorrow to see if we can get to the bottom of it, but by and large, my GI doc is attributing it to active IBD in my remaining cuff.

Hopefully you can get some answers from your specialist to help with your arthritis pains and once the remaining diseased colon is gone, you will get symptom relief. My surgeon now wants to remove my cuff to help with my issues.

There are several different kinds of j-pouch surgeries. In the double staple surgery several cm of the rectum is left at the rectal cuff and the j-pouch is stapled to that 2cm. They say we have better control of our BM's this way. Unfortunately some of us get UC again in the 2 cm. I have chronic cuffitis (UC) as does jeane. Some of us can control it with medication and some can't. I'm doing better with the medication.

Another surgery the scrape the mucosa off of the portion of the rectum they keep and hand sew the j-pouch to that.

There are also pouches that are not like j-pouches in that they are emptied with a catheter and there is a forum on here for K-pouches. That's also an alternative but only 2 places in the US perform the operation.

I hope you get off of prednisone and your remaining colon/rectum gets well enough to proceed.

Thanks for your responses. I'm several months out from step 2 (maybe half a year or more), but I believe the plan is to get rid of all UC potential. I'm pretty sure the plan is to scrape as my rectum has always been the worst part for me.

Mine always had UC too, from the first colonoscopy in 1998 please ask for sure. I read cuffitis only affects 4% but it sure seems like more of us than that. This site is a support group, probably explains that. Plus I wonder if the 4% is just of UCer's getting the pouch or if it includes everyone else, like cancer, FAP etc.

You don't want cuffitis so I hope they are doing that kind.

Also I had an open surgery vs laproscopic. I am having scar/adhesion pain and you get less scaring with lapro. I guess if you've already had open they will probably do that again.

Are they going to do it in 3 steps or 2? Some people have step 2 and the take down, #3, at the same time.

I had UC for 33 years with joint pain being the first sign of a flare up. Had to stop using steroids in 2008 and from then on the pain in my sacro-iliac joint and hips increased until the point that I could barely walk, could not sit in a chair or stand still so I spent most of 2011 lying down in bed. Despite large amounts of oxycontin I was in permanent pain and had zero quality of life. I had my colon and rectum removed in May 2012 (the sugeon removed everything so ileum was sown straight onto anus). When I woke up from surgery I knew that the sacro-iliac pain had gone and now I am off all painkillers and can definately say that having the J-Pouch surgery cured my joint problems. I now have a totally amazing life infront of me again! Good luck.

Kiwi -

Thanks for your positive story!

Yes, think the trick is to stay positive. It is huge surgery and whilst family and friends are a great support, one of the hardest things I had to deal with is managing their expectations. They want and expect you to be well again and don't realise just how hard it is, how tired you feel and what a long road recovery can be. Sometimes I just wanted to pull the covers over my head and see no-one as I just couldn't put a smile on. I found this site so helpful in my bad times, just to realise that although everyone is different it was not just me going through the more difficult bits. I kept reading accounts of how everything get's better in the end......and that is so true. If I have improved this much in 4 months, I can't wait for my one year out which seems to be a milestone!! I still go to the toilet about 10 times a day, but I would be happy with that forever as it is so much better than having UC.

Thank you for the positive story! That's great that you have your life back!

The colon that's left right now is flaring (bloody/mucousy output). I will likely have three operations. I really truly doubt that my surgeon will combine steps 2 and 3.

I will try and stay positive. You mentioned family expecting too much...I think I expect too much! I was just starting to feel a bit normal and bam...couldn't fully close my hands, felt like I was walking on rocks all the time, etc.

I have to say though, all in all, I've had a relatively smooth surgery recovery.

I had bad IBD joint pain with UC. Like Kiwi it was usually a precursor to a huge flare. After step 1 of 3 for jpouch.. all that joint pain was gone. I was so happy. I hadn't even realized how much pain I had been living with. But after step 2.. with diversion pouchitis I got it again. And then after step 3.. with takedown I had horrid joint pains.. but then again my jpouch was a failure immediately from onset. Then when I got a diverting ileo.. didn't have it at first.. but then joint pains got bad, so bad it was a huge reason I went for jpouch excision and perm. ileo. But unbeknownest to me.. the darn UC can still come back to haunt you. so even with no colon and no jpouch.. I'm still dealing with supposedly UC related joint pains.

Wow Liz, I keep praying that if they yank my pouch, the terrible muscle and joint pain will finally remit. It is often worse than the cuffitis pain. The only way I can describe it is like someone is injecting poison into my vein that then flows through every cell in my body from my elbows down to my lower calf muscles. The pain is constant and never remits.

ActiveUC'er....Hope you don't have to wait to much longer for your sugery. My sugeon said he removed everything to prevent any reactivation of the UC inflammation which made sense to me. The big test for me is to see whether I get the sacroilitis back if I develop pouchitis. Don't expect too much of yourself at the moment, and don't push yourself too hard after your next surgery(s). Healing takes time, if you feel tired take a nap, if you feel like doing something do it.....don't leave it until later as you probably won't feel like it then and if you really want to do nothing....that's the key. I am a firm believer in that your body tells you what it is ready for so listen. The whole process is just awful full of ups and downs. I am on an up today as I woke up feeling so good we went out to lunch for the first time and even had a dessert without feeling sick. It is 4 hours later and I still haven't been to the bathroon YIPPPEEEE! However, I know that feeling this good is the exception to the rule at the moment, but good days are now outweighing bad ones. It will be worth it in the end.

I honestly do not think that there are any 'rules' to this thing...I am 33+ years out from my pouch creation (k pouch, J pouches didn't exisit back then) and my sacro-iliac pain is killing me. Sitting, laying down (worse!) is preventing me from enjoying myself...it is pure inflamation and the only time that it feels better is when I am walking (the sign of inflamation is that it gets better when you walk or move it...just takes a little while to get past the first part or the pain) .
I take 2 naproxin a day, 2 -4 tylenol and last night discoverd that a heating pad is my very best friend...finally slept.
I have no cuff, rectum or opening (Barbie butt) so it is not that. It just is and we have to live with it...hot water helps (I don't have a jacuzzi so I just take hot baths) and generally so does moist heat (those heating pads with grains in them that you warm up in the microwave).
Funny enough it is all of the joints on the right side of my body (neck, shoulder, back, hip, knee...)...my left side is almost 'normal'...my pouch is on my right side too so who knows. I see a chiro to keep things lined up but I honestly don't know how much longer I am going to be able to go on with this before I have to bump my meds up to something stronger (doc already offered opiates and I refused for now...Stupid me!).
Sharon

Really feel for you Sharon. I would never have imagined that sacro-iliac pain could be so bad. It is beyond imagination and crippling. It is constant and never goes away.
The most awful part of it for me was waking up in the night screaming and being totally stuck and unable to roll over. It is interesting that it is on the same side as where your pouch was. The narcotics were the only thing that gave me any relief, but the dose kept going up and up. Take care. Caroline

When I was a kid there was this commercial about these little pills for back pain and they showed this image of a huge red knot in the middle of a man's back and after he took the pill the knot, unknotted....That is what it feels like...a hot poker tied into a knot...I want that pill!
I exercised for 1.5hrs this morning and the pain was almost gone afterward but it takes that long to stretch out and lubricate the joint...I would never have believed that anything non-surgical could hurt this bad.
There is one thing that really seems to help though...in my kitchen, the counter is L-shaped. I put one hand on either side of the L and raise myself off the ground, hanging there for as long as I can (about 10-15 secs.). It lets my lower body's weight pull down and stretch out my spine and pelvis...I do it facing the counter and with my back to the counter, alternately. Some days I only do it once or twice but this week it has been every hour. It takes a few tries until the vertabrae start to jiggle in but it feels great once the do.
Hope that it helps
Sharon

Funny, but I used to describe it as a red hot poker being rammed up my bottom, up my spine. Also my buttocks and hips were just agony to touch rather like having a sore burn. I got some relief from lying on my back on the bed and hanging my legs from the knees down over the edge. Also, once when I was hospitalised with UC the physio lay me down and just pulled my feed and legs....boy that felt good, shame he couldn't stay there all day!

Sharon - Do you have Chiropractors in France?

I'm sorry you are having such a bad "spell", I hope it is just temporary. When I read your post a picture of Richard Gere hanging from his feet in boots from the movie "Gigolo" came to mind.

I am blessed to have the European Chiropractic College just 2 blocks away from here...it costs me an annual fee of 20€ (about $25) and 15€ each treatment (treatments last 1-1.5hrs) and I usually walk out of there on a cloud. The Chiros are last year students and 1 or their professors is from Chicago and a girlfriend of mine...she picks the best and strongest students for me...they work in the clinic for 1yr and it is great...Yes, kiwi, they pull my legs too (traction) and it feel fabulous.
Tough,
Richard Gere? I'll hang upside down with him any time he wants...I'll even let him massage my back if he likes
My insurance pays 100€/yr for Chiro so it give me 6 treatments. Not much but it helps.
I am going to go hang off the kitchen counter now (upside down like a bat!)
Sharon

Good, I think you need an appointment!

Were they called "carters little pills" or something like that?

Yes!!!! That's it!
Sharon

Fortunately the arthritis seems to be distal (hands, feet, elbows, knees) and not debilitating. I'm very sorry that some of you are dealing with such bad pain. It's great that you are out able to do anything.

I have to wait at least six months for my next step. I was on steroids for too long and have to lose weight. But the lower I go on pred, the worse the arthritis gets. Nice catch 22 . I am trying to listen to my body. I had plans for this morning but when I woke up I decided that I needed rest more. I'll push myself to go to work (start back up on Monday) but that's the only thing I'll push for.

Right now I have Celebrex and it seems to be helping. It's an NSAID (and I'm still bleeding from the remaining rectum) but the Doc said it was a different type of NSAID and would be better than Advil, Aleve, etc.

Active UC'r,

Don't push too soon tor he next surgery. Not sure of you had two step or three. Take your time, heal and get off steroids (assuming you can)for a period of time before going in for the surgery. I wish I had allowed by body to heal and be off steroids before my jpouch creation or or even that my surgeon really offered me the choice (or I requested it). I think some of the issues I am having now could have been alleviated if I had more time to heal and get off steriods before my jpouch was created even if it mean an ostomy for an extended period of time.

ActiveUCer
I agree with jeane about waiting for step 2. I wish I'd waited before my take down. I know they have not formed your pouch yet and think that means you have a permanent ostomy vs a loop. I hated my loop so bad I couldn't wait to dump it, plus I wanted to get the operation done before year end so I wouldn't have to pay our entire deductible out in January. Dumb dumb reason.

I was very overweight from taking prednisone years ago. I'd been on 100 diets but couldn't loose more than 20 lbs and then I'd put it back on with more. That is why I wouldn't take it again, I couldn't afford another 60 pounds I couldn't loose. The weight just about fell off of me after the surgeries and I've lost it all but it is not the way to loose it. I thought right away that I wish I'd tolerated the ostomy longer and lost some weight before the take down.

The surgeon, who could loose around 50 lbs himself, never mentioned me waiting longer, he was ready to finish it up at 8 weeks. I developed a large abscess under my incision so when I woke up I had a huge hole in my abdomen under my belly button. My husband had to measure it. It was 2 inches deep, 2 inches long and a bit over 1 inch wide. He had to cut it out through all of my blubber. That's what it looked like to me anyway. It had to heal open meaning I had to pack it several times a day until it closed on it's own - months.

The point I'm trying to make is there are many things that can go wrong. My abscess is just one. Please take your time.

Fortunately my end ileo and I are getting along pretty well (I am indeed a three stepper). My other complication is peristomal pyoderma . My pouching system isn't causing any problems right now, thank goodness (knock on wood)!

I know I will get impatient but also know I need to take my time. I don't think my surgeon (Dr. Remzi, Cleveland) will let me talk him into anything in terms of timing!! He definitely has enough patients to keep him busy otherwise.

I'll probably get annoyed with the weight loss thing. I'm not planning to drop too quickly/ unhealthily. I lost quite a bit of weight before my UC fun began and then gained it all back plus some with the illness/pred. I know what it took that time so I just hope it hasn't gotten a ton harder. Plus, my pred taper is planned for about a month longer than we originally planned it for. So there's some additional time on my surgery timeline anyway.

I've heard some not fun things about the loop ileo. When you are so close to being done, and having issues, I can see why you would want to push ahead. I'm not sure what his standard steps 2 to 3 waiting time is, but I will keep your stories in mind and not rush it.

Also, in regards to the arthritis - I'm going to try really really hard not to go on any steroids or immune-suppressants. I would have to be near non-functional to think about it. Aside from Celebrex, I'm not going on anything until I check with the surgeon's office. I don't want anything to interfere with healing.

And thank you all for your advice. I'm sorry your advice is coming from "been there, done that" but I feel fortunate that there are those out there to help.

You'll do just fine. The weight loss came because I simply was not hungry and/or didn't want to put too much food in my system. It took a year so I guess it didn't just melt off....

I hope your arthritis behaves.

Even the darkest clouds can have silver linings. I lost 14 kg in the first month which has now levelled out at 10kg loss....my perfect weight which, coming up to 50 I thought I would never see again!! I suggested to my surgeon (who, Sharon, is French ....all the way out he in the middle of rural NZ!) that he should be on the extreme makeover show. Other benefits are the nails on my hands and feet, which never used to grow much I now actually have to cut and my skin is clear of blemishes. The sugery also got rid of my vaginal prolapse, just through the repositioning of everything else and my bladder now empties fully about 3 times a day, rather than 15 or so. Fantastic.

ActiveUC'r

I just read part of your blog posts. You are an excellent writer. So sorry about you getting PD. There is a guy posting in here somewhere that got it also but on his shins. I think he was trying to find someone else that's dealing with it. Having it around your stoma area has to be painful.

I hope everything goes well when you return to work tomorrow.

Tough - thanks for the compliment and thanks for the well wishes!

I missed my celebrex dose last night and thought I would start taking it in the mornings. BIG mistake. It is definitely helping!

I had IBD related arthritis myself that had developed over the
six months prior to my first surgery in July this year. I didn't
realize just how bad it had become until I woke up after surgery
and the pain was gone!

In a wait and watch mode right now to see if it starts to manifest
again...

I had UC in 1985 surgery for j pouch in 1986 three to be exact I had IBD arthritis at this time the j pouch surgery was the old style the rectum was removed no cuff within a few months the arthritis was gone. I am now facing possible Crohns at the least ideopathic IBD the inlet and the pouch is involved am on 20 mg of prednisone so far no real occurance of arthritis just the usual getting old stuff. I think it depends on how much tissue is left from the rectum as to if you face joint issues in a big way. Shawne

shawne,
I'm sorry to hear you are having problems. I would think I had no worries if I'd had my pouch as long as you have. I'm assuming you didn't have pouchitis?

I speak for my self but wish I'd had the old-time take the entire rectum surgery. I have chronic Cuffitis that is under control but if I quit using the suppositories it comes back.