Biologics are fine with me, but I haven't seen reports that they work for antibiotic-dependent pouchitis. Maybe I missed it? Are your symptoms troublesome, or just your pouchoscopy? In any case, I hope all goes well and you get a great result.

Scott-

 

Symptoms are as well controlled by antibiotics as they have always been. However the inflammation is very active and doesn't look good. If you saw my pics, you would wonder how I have no symptoms.  You cannot ignore inflammation just because you are not having any symptoms.  No dysplasia has come back but I did have dysplasia in the colon and I am a risk.  My doctor thinks remicade should be started once my thyroid cancer radiation is over and he is sending a letter to my endocrinologist about it.

Antibiotics can in and of themselves work to take down symptoms of inflammation. I was reading something Shen wrote about it from 2011. I do think it makes sense to treat the massive inflammation.  Give it a shot at least. Shen has an interesting algorithm of types of pouchitis and treatments. (Sorry I am becoming a groupie)  I will try to post it, the Kindle is winning.

Yes, antibiotics are one of the treatments for Crohn's.

 

I am surprised you were able to avoid biologics this long. My only reservations with Remicade is the necessity for office vists for IV infusions (increased costs and hassle) and the higher risk of allergic and or antibody formation (as compared to other biologics). What it has going for is more data, since it has been in use longer. But, I have never personally tried it. I have used 4 other biologics over the years (all by self injection).

 

Jan

Jan,

 

Remicade was suggested as a treatment for me years ago, although I was told that it was the "last line" of treatments for what we thought was pouchitis at the time.  My former GI didn't think I was ready for it, but my last scope was not good, and now it seems like I am ready for it. My new GI is more certain of a Crohn's diagnosis, although his pathologist's analysis, like 2 other pathologists who have looked at the issue, was inconclusive as to whether we are dealing with pouchitis or Crohn's Disease.  What he told me was that he thought the configuration of my ulcerations- deep and punched out looking - were more Crohn's like in appearance than pouchitis-like in appearance. So he is going off the cosmetics of it.

 

Jan, should I be asking my doctor why not Humira or 6MP instead of Remicade, due to the risks you mentioned?  I do have another appointment with him in September when my thyroid cancer radiation treatment will be presumed to be over.  So far I seem to have passed the tuberculosis skin test they did on me. I also had some blood work ordered, but it's not clear to me if I should do that now or post-radiation treatment.

Sure, something to talk about. Sometimes doctors just go with their treatment algorithms, without thinking of patient impact. I would think it would be very inconvenient for a busy trial attorney to schedule a day off every 4-8 weeks for these infusions. Sure, maybe you could go back to work after taking only half a day off, but you could not plan appearances, etc. in case things go sideways and you have a reaction or feel sick the rest of the day. But, only you know how much of an impact this would be.

 

No matter which biologic you are on, you will need to do monitoring labs every 3 months, but you could time it with your thyroid checks to minimize the hassle. You'll need to call your GI about timing the labs before starting. I'd think they'd want it after the radiation to make sure you were all good prior to starting treatment. They need to monitor liver, kidney, and bone marrow function.

 

Another drug to discuss is methotrexate, but more likely that or 6MP would be an add on after the biologic. It takes up to three months before you can determine the effectiveness of biologics. Plus, effectiveness can wane over time and you'll have to switch.

 

Jan

The transition will create a bit of a challenge, if you're planning to stop the antibiotics. If you stop them too soon, you could be quite uncomfortable for a while, until the Remicade does its best-case thing. If you delay stopping them it may be difficult to tell if the Remicade is working, since you have no symptoms to track. Multiple pouchoscopies might be the best choice. Have you discussed a transition plan?

The plan will not be discussed until my radiation treatment is done which will not be until September.  There is no reason to take me off antibiotics because while they are helping the symptoms they are not clearing up the inflammation.  I am told by Crohn's patients that were on Remicade the inflammation cleared up after their infusions so I imagine I will stay on antibiotics until the first infusion is deemed to kick in.

 

But I am going to talk about 6MP and Humira as alternative biologic options as suggested by Jan.

Have a friend on 6mp and she is doing great with it. Planning is good but it does sound like you have a bit before you have to commit. Are you back to work yet? ;p

I will go back to work Monday.  Currently I am not allowed to drive as they do not want me swivelling my neck.  Also no swimming pools for 3-4 weeks which is a bummer because I like to swim. It seems like I will be on one of the biologics soon after the thyroid cancer radiation is finished.

I just want to say how sorry I am about your health issues. I hope that you can get rid of the inflammation and also be cancer free. 

I had the choice of Remicade or Humira. I chose the Hurima because I can give the injections at home. I was scared to death but the injections are simple and easy to give. I haven't had any side effects either with the Humira. 

I hope you continue to have an unremarkable recovery from your cancer surgery. As for your constant inflammation, while on antibiotics, I wonder about it too. It looks like nothing is working well enough for me.

When I was on Antibiotics and Entocort and couldn't wean off the Entocort (while staying on antibiotics) we knew I had to make a change. My doc recommended a biological combined with Immuran, which he felt would decrease my likelihood of developing an antibody to the biological. (I had never taken Immuran pre-colon removal, 20+ years ago). I decided instead to just go with Immuran first, instead of the biological, because once you start the biological you can't stop without risk of developing antibodies, and I felt Zid always wonder if I really "needed" the biological or if Immuran could do the trick. I didn't think Immuran without a biological would have a high likelihood of working, but I wanted to try it and I liked the idea I still had biologics as an option.

So-past 2 years I have rotated antibiotics and been on Immurran and 6mg Entocort. Been slowly weaning off Enticort past 4 months-down to 2 3mg pills per week. Have been feeling better than I have in years and more functional than I've been in years. Just was re-scoped and my pouch looked beautiful! 2 years ago it was moderate with patches of severe and this year it was healthy with a few small patches of mild.

For me, based on my positive results, I'm glad I went with Immuran and am saving biologics for another day! Also discussed with doc how diagnosis doesn't matter (I totally agree) and all that matters is finding s treatment that works-for me, for now, my magic ticket is antibiotics and Immuran and I couldn't be more pleased!

All the best!

It was suggested to me that I try Imuran back in the early 1990s when I still had my colon and UC.  In those days, Remicade did not exist, nor did 6MP, which I have heard is a "designer replacement" for Imuran. 

 

In any event, blood labs taken shortly after I started taking Imuran showed that my liver chemistries went haywire, so they had to take me off.

 

There are some members in my CCFA support group with Crohn's who are taking Remicade with 6MP for the same reason you, and Jan previously, mentioned: prevention of development of antibodies. Two different members in my CCFA support group had 3 plus years where this treatment worked extremely well but they ultimately did have a reaction.  I heard that the next line of treatment for them is Cimzia, which I believe is an even newer drug.

CT Barrister,

We have a lot in common. I have lymphoma in the GI area, Shen said he thought I had crohns but biopsy is inconclusive, there is a lot of inflammation but Shen has not recommended biological since I can't take it with the cancer. What is the CCFA support group, it sounds like it has been so helpful and perhaps they have one in my area?

My thoughts are with you and hope all goes well with your treatments.. I start my hyperbaric oxygen treatments tomorrow. 

Clouseau,

 

I know of two active CCFA support groups in Connecticut, one in northern Connecticut and the other in southern Connecticut.  I would go to the CCFA website to look for the group in your area.  I belong to the southern Connecticut group which meets in Guilford, CT the 3rd Tuesday every month.  It's a very good group.  We have a few people with J Pouches, one with a permanent ileo and a bunch with either Crohn's or UC.  Most of the people in the group are in their 30s or 40s, and work and have productive lives.  Most of the members are very positive and on top of things in managing their illnesses and they have been a good source of information as well as support for me.

 

Thanks for your thoughts Clouseau.  I am nearing the end of my thyroid cancer treatment with a whole body scan scheduled on Sept. 23 to establish a baseline on the location and extent of any remaining thyroid cells in my body.  After that it could take up to 6 months for the radioactive iodine to do its thing and kill those cells.  But I will be turning my full attention to the remicade treatment in October.

 

Good luck with your battle against the lymphoma & GI inflammation, a 2 front war.

CTBarrister...While I really feel for everything you are going through and I'm so so sorry to hear about the cancer, I just want to tell you how helpful and insightful all of your posts have been to me over these years.  Your story reads exactly like mine except you're about 15 years ahead of me.  You have been much more successful at keeping antibiotics working as well.  Even with rotation, I'm sort of reaching the end of antibiotics that still work for me and also treat pouchitis.  I've exhausted Cipro, Augmentin, and Pepto and the Flagyl and Xifaxan are definitely not doing the job they used to.  So, I read your stories and your health plans and consider that I will likely be here in just a few years if not sooner.  With my Crohns, not Crohns, Crohns, not Crohns diagnosis, my doc also brought up the Remicade/6MP type meds a few months ago, but for now, we'll stick to the antibiotics as my imaging still looks OK (while it always show active inflammation).

 

In related news, my brother started with GI issues in July.  They can't tell what's going on from colonoscopy and biopsies just yet (other than inflammation and diverticulosis), but said it isn't consistent with UC.  Patterns and ulcers maybe look more like Crohns.  MRE should tell more.  

clz81,

 

Thanks for your post.  It is very much appreciated.  It seems like there are actually a few of us on this board in this pattern of having a question mark Crohn's vs. pouchitis that has never been resolved, chronic inflammation, and antibiotics treating the symptoms but never getting rid of the inflammation.  For me, I have been in this pattern for 20 years now.  The one suggestion I can make to you is this: pay close attention to your pouch scope pics over the years.  I think mine have slowly gotten worse over time.  Part of this, I think, was poor dietary habits which I have changed.  Things got to their worst in 2012 when I had a really bad scope and a stricture at the J Pouch inlet and had to go on Entocort. For the next couple of years I did a Paleo Diet and the scopes were better, but I had another bad scope this year.  It has been in the back of my mind that I would eventually get to the point of needing biologics to control the inflammation and I have now reached that point and am not fighting the idea of taking biologics any more.

 

I have the ability to recall in my head what my scopes looked like.  I would urge you to save your scope pics and keep an eye on the pattern and extent of the inflammation.  If it gets worse do what you have to do to control it.  None of us really want to have to deal with this, but we have no choice.

 

Regarding the thyroid cancer I am hoping it's just a bump in the road.  I do wonder whether the thyroid cancer I have is tied to autoimmune disorder.  My endocrinologist told me the kind of cancer I have is a genetic mutation that developed during my lifetime.  What caused that mutation?  We will never know.  Radiation can be suspected, but I did not have any more X rays than the average person and I was not at Chernobyl.  So we will never really know.  But I am dealing with it and hopefully moving on from it very soon.

 

Thanks again for your post.

Okay just an update.  Since I last posted on 9/23/15 I had the whole body scan and was determined to be cancer free with no metastasis.  The only uptake of radioactive iodine was observed in the thyroid bed (formerly occupied by the surgically removed thyroid), which is normal.  Nothing else was seen.

 

So I saw my GI Doc today and hope to start Remicade.  He, however, is very concerned about starting the Remicade so soon after the completion of my thyroid cancer treatment.  He said it might be prudent to wait a year or two, but that he will speak to my endocrinologist.  He also suggested I might want to get a consult from an oncologist on the issue of whether Remicade treatment could lead to a recurrence of the thyroid cancer or an activation of any lingering cells, especially since I did have a small metastasis into the central cervical lymph node (which was excised in the surgery).  He also told me that 6MP was an absolute no-no with the Remicade based on the thyroid cancer treatment being so recently concluded.

 

I did get a TB skin test as well as a battery of blood tests, but everything is now on hold until my GI and endocrinologist speak further on these issues.

 

Meanwhile, I told my GI that based on my scope pics and 20 years of chronic pouchitis, I was very worried about rectal cuff cancer if the inflammation isn't adequately treated.  He told me it's "low risk".  I told him that I was tested positive for the BRAF genetic mutation in conjunction with the surgical pathology report on my thyroid cancer.  He admitted to me that BRAF 2 (I don't know if I am positive for BRAF 1 or 2) could cause a colonic cancer to metastasize.  I then mentioned to him that there is also risk that if the inflammation isn't aggressively treated, I will develop a rectal cuff cancer that will metastasize like wildfire due to BRAF.  He seemed less worried about this happening in the next year, than a too-early course of Remicade reactivating thyroid cancer cells.

 

What do you guys think?  Should I wait on the Remicade for a year or so, or roll the dice and hope that the whole body scan showing no cancer was dead on?

wow, you really have the medical text books open and well read.  so important to be well informed to be an effective advocate, which it certainly sounds as if you are.

 

i tried remicade years ago, although without any of your complications, and found it only went so far in calming the pouchitis.  since then i have gone through all of the antibiotics and am now refactory or allergic to them.  in july 2014 i started entvyio, which i throw out as an alternative as i do not think you have mentioned it, although i might be mistaken.  in combination with the lowFODMAP diet it was effective until this summer.  (subsequently i'm converting to a k pouch.)   the entvyio cleared up the cuffitis in a flash!!

 

canasa suppositories had been effective for cuffitis and somewhat for pouchitis.  i think the medication covers the ulcers for a short time and calms them down, but that's just my imaging of what the suppository does upon melting.....  

 

another thing i've used is vsl#3 capsules as suppositories.  would pop two in a day and that helped a bit.  the biggest help was consuming no refined sugar, and i mean none.  if i do--say i eat at a thai place--i'll have massive bleeding in 6-8 hours.  same with shellfish.

 

sorry but do not have any other suggestions and not even sure this is helpful.  so sorry for what you are going through.  it's tough stuff.  keep fighting!  janet

CT, I also think the risk of cuff cancer is very low, even with the risk factors you describe. As long as you get it looked at and biopsied periodically the risk isn't the best reason to change your treatment if it's working otherwise.

Well, I spoke to my endocrinologist who spoke to the GI and told him: (1) No immunological drug will interfere with the radioactive iodine treatment because it's in any remaining thyroid cancer cells and will kill them, and this distinguishes thyroid cancer treatment from any other cancer treatment (I should note my GI admitted to me he had other cancer patients but I was his first thyroid cancer patient); and (2) My BRAF genetic mutation is specific to thyroid cancer which is now, presumably and hopefully, eradicated from my body, so the concern about rectal cuff cancer suddenly forming and metastasizing is likely not a real significant concern.

 

The bottom line is that if there is nothing that the Remicade is going to interfere with, there is no reason to delay it.  I was told the radioactive iodine may take up to 6 months to kill the cancer cells and my follow up will be after that, so I am not technically cancer free at this time but he anticipates I will be.  This all gravitates towards a possible 6 month delay in starting Remicade, at most.  I will discuss further with my GI tomorrow.

Janet-

 

Thanks for your post.  Another thing I should mention is that some people in my CCFA support group, including another J Poucher and some Crohn's patients, are also talking up turmeric capsules as a herbal supplement because of its powerful anti-inflammatory properties.  I picked up a bottle at Rite Aid and I will be taking that and some Pepto Bismol as well.

CT

again, sorry i couldn't weigh in on an opinion re remicade and instead gave you other suggestions--in life i prefer if people answer the question posed them, and i didn't do that.  forgot to mention turmeric.  according to consumer labs.com/also the dietitian who suggested it: the stuff to get is jarrow formulas churchmen 95.  take 2 500 mg pills 2 x daily.  i fell off of taking it, but probably good to restart for my ortho problems as well as gi. i wonder about stuffing them into the pouch directly.  what you think?  i'll try anything.....

 

i am curious.  what sort of diet do you follow?

 

keep me posted as to your decision on remicade.  good luck, janet

Ct Barrister - I'm from Durham, Ct and would love to join the support group you belong to. Can you send me more information. Our stories sound so similar, would love to chat with you at a meeting.

Brewbirds,

 

Our group meets on the third Tuesday every month in Guilford CT, at the police station community room.  I will send you a private message on how to contact our group leader.

Janet,

 

I follow a modified Paleo diet.  I cut out processed carbs a long time ago.  I also limit my sugar intake.  I do eat eggs and the one processed food item I have is sausages with my eggs, although I stick to natural minimally processed type sausage.  I eat only whole grain cereals like whole oats, nothing processed.  Otherwise I eat a lot of whole foods.

your diet is similar to the lowFODMAP, which if you don't have SIBO there 's no need to follow it.  also, only minimizes the symptoms.  another diet, which i've not looked at for years, is the breaking the vicious cycle.  that might provide you some insight.   clearly you are careful about your foods.

 

yes, forgot to mention those evil--and so seductive--bags of potatoes chips, or french fries sprinkled with salt.  yup, 8 hours later and mucho bleeding.  

 

keep us posted on the remicade decision.  good luck in making it.  jlh

Actually, I have been told that I have SIBO.  The evidence of this is the irregular swath of inflammation in the neoterminal ileum just above the J Pouch.  That is what led me to go on the Paleo Diet in the first place, back in late 2012 or early 2013.

 

I am leaning towards starting Remicade now rather than waiting 6 months, but am still awaiting results of the blood tests done yesterday and have an appointment on 10/27 to discuss the issue of when we start Remicade with my GI doctor.

Have you tried any of the biologics? Just curious why Remicade vs Humira that can be done at home etc?

CT, you are very brave.  It sounds like you have either considered and dismissed or haven't considered to divert to an ileostomy.  I never did have good j-pouch function as I got cuffitis and c.diff first.  C.diff was the only thing I got rid of.  At the end I had chronic cuffitis, chronic pouchitis, IPS, an enlarged j-pouch and pelvic floor dysfunction. I opted to divert to a permanent ileo.  My GI and Surgeon are at the Mayo Clinic in Rochester, MN and my surgery was there on 8/31/15.  

 

I thought I was going to hate my permanent ileo as I'd had a horrible time with my temp one 5 yrs ago. Now I wish I would have done this at least 18 months before then. I elected to have the j-pouch surgeries instead of using biologics 5 years ago. The research I did, the length of time I'd had UC and my age of 54 made me decide to have the surgeries.  If I'd been younger and had time to wait for a cure in the future my choice might have been different.  

 

Cuffitis only affects 4% of us and mine was chronic. So I don't like percentages anymore.  Some of us are unfortunately the people in that 4% or 25% or 50% etc.  

You are already dealing with cancer and I understand that going on a Biologic has noting to do with cancer of the thyroid - but one of the side effects is cancer etc.  If you feel that using one will get rid of your cuffitis and pouchitis then it's your body and I hope it works.  I remember looking at one of your pouchscope pictures on here a while back. You are right it wasn't pretty.  

 

In my opinion I had/have IBD in my entire j-pouch.  I've posted links to a study that says that in so many words. People that get j-pouches for FAP don't get cuffitis and rarely pouchitis.  Looking down the road you might still end up diverting or having it removed.  I just wanted to toss this alternative out here as I didn't see it discussed.

Good Luck

TE Marie,

 

I think it would be fair to say I have considered and dismissed the possibility of a permanent end ileo.  My experience with the temporary ileo was nothing short of horrendous, with chronic leakages and skin infections.  My skin area around the stoma was/is highly sensitive and that will never change.  In any event, I have decided that I want to keep my J Pouch at all costs.  It has been a calculated decision.  I told my GI I did not believe I could live with a permanent ileo and he said I could and I said I couldn't and we agreed to disagree.

 

I don't consider it being brave but doing what I have to do to save the J Pouch at this point.  What concerns me the most is that the inflammation pattern over 20 years in my J Pouch is following or mirroring the inflammation pattern over 20 years in my colon when I had ulcerative colitis, which ultimately led to dysplasia and removal of the colon.  I still have that rectal cuff and over the past years there has been more inflammation in it while my symptoms have remained relatively the same.  I have a friend who has Crohn's who told me he never looks at his scope pics because he has no interest in seeing them and that is what doctors are for.  Although he is otherwise a very intelligent man, this particular position is terribly ignorant in my opinion.  Everyone should look at their scope pics, keep the scope pics or memorize what they look like because over 20 years you will change doctors, they will move and retire etc.  I do all of the above.  Based on the history of my 43 years with IBD my J Pouch is headed in the same direction as my colon over the course of 20 plus years: gradual deterioration.  I want to try and be as aggressive as possible to stop the progression of the inflammation I am seeing.  I should note, my quality of life is good because the antibiotics hold the symptoms in check.  They do not and have not gotten rid of the inflammation which has slowly progressed.

CT

to catch up on several concerns.

although the lowFODMAP diet doesn't stop pouchitis it can help control some of the symptoms.  i think that when the bacterial overgrowth is active in the SI it adds to the pressure in the pouch, which gives one the feeling that necessary to evacuate, but it isn't and that leads to other problems.  you might check out monash u.'s info or kate scarlata's--google those names--re FODMAP.  i've posted links on this forum.  also, try no sugar.

 

i agree, if you have a chronic disease it is best to know what your conditions are.  i can tell you exactly where the pouchitis is!

 

forgot, have you tried canasa for the cuffitis?  it worked for me.  entyvio also worked for me, at least for awhile.  have they offered that?

 

is the pouchitis caused by ischemia?  one of the docs i say in nyc thought he could reconstruct my pouch as it was wrong from the getgo.  maybe a second opinion that is outside of your current hospital system would be helpful?  i can provide you the contact for the two docs i saw in nyc.  and of course, there is cleveland clinic.  spirit flies there so rather cheap transport.

 

my doc keeps arguing for the bag, says it will be 'liberating'.  we agree to disagree, although he is coming around to my decision to have the k pouch.  good luck, janet

Janet-

 

I do not have cuffitis, I have inflammation of the cuff which I think is something different.  I really didn't have any inflammation there for a long time but in recent years there has been some.

 

I want to reiterate that as long as I take antibiotics, my quality of life is good.  I work full time as an attorney, go to the gym, and have a very full work and social life.  My concern is that the inflammation is not being treated and is rather active on recent scope pics.  One cannot sit idly by and allow inflammation to get worse, regardless of how one feels.  That is basically my mindset.

 

My docs have told me I have SIBO, and I think diet has helped on the symptoms but not on checking the progress of the inflammation.

 

I have tried enemas and suppositories and they have not really helped at all.  I have had trouble holding enemas, and the suppositories are not treating inflammation above my pouch or in my pouch.

CT, I beg to differ, cuffitis IS inflammation of the cuff

-itis as a suffix on any word = inflammation.

So rectal cuff inflammation = cuffitis.

http://www.ncbi.nlm.nih.gov/m/pubmed/15307872/

Rachel,

 

For some reason in my prior post I was confusing cuffitis in my head with c-diff, which is something that is different.  I think you are right that cuffitis= inflammation of the cuff.

I am waiting approval for Entyvio. If it works I can reconnect, if it does not well.....

Good luck with the Remicade, it works the fastest. 

 

 

I had many problems with my temp stoma that I was hospitalized 16 days after my first surgery.  I had visiting nurses for a few weeks and by some miracle managed to keep it going for the 8 weeks in-between surgeries.  I thought the same as you do CT.  Keep my pouch forever.  Unfortunately I had symptoms and problems that among other things caused a lot of pain.  

 

My permanent ileostomy was difficult at the beginning but is better than I hoped it would be.  Night and day difference between it and the temp. There were many one here that said this but I still cringed every time I thought about my temp one.  

 

I know what you mean about the skin as that has taken me many visits to a stoma NP and 7 weeks to get under control. I was scared and felt like I caved in or something like that because I had the diversion done. I don't feel that way any more.  As AllyKat says, she is going back to her j-pouch as soon as her medication clears it up. I still have that option but doubt I well ever go back - but I didn't have it removed either.

 

I hope it all works out for you!