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CTBarrister
I am writing to report on the MRI Enterography I had done at Yale New Haven Hospital. Some of you may recall that when I was scoped on June 22, my pouch expert found inflammation in my ileum above the pouch. My doctor then ordered the MRI Enterography to see if there was any thickening of my small bowel that would signal further inflammation farther up the pipeline, so to speak.

I got a call from the Yale New Haven Hospital MRI Center 2 days before the procedure to confirm. I explained that when I had the CT Enterography done in 2008, after drinking Volumen at specifically timed intervals, they could not get an IV going in my arm and 20 minutes of times were wasted while the Volumen travelled pointlessly down my gut. I suggested that to avoid a replay of this comedy show I endured at St. Rafael's Hospital in 2008, we should get the IV in me before I started drinking the Volumen. The tech responded cheerfully that they would note this down for the assigned Tech to review, and she also reminded me to drink plenty of fluids the day before the procedure, so that my veins would be "plump and juicy" (her words, lol).

I arrived for the procedure at 7:30 a.m. After the usual paperwork, they decided to go along with my suggestion and start the IV before I started drinking the Volumen. The radiology tech could not get a vein, so they brought in a nurse and she got the job done, finally sticking a vein on the top of my left hand and then taping the IV insertion tube to my hand.

The next step was drinking the Volumen, which is a Barium Sulfate Suspension. For this test, you must consume three (3) 450 ml bottles of Volumen in timed 20 minute intervals. My timed intervals were 8:25 a.m., 8:45 a.m, and 9:05 a.m. The Volumen, and I hate to say this but it is the only thing that comes to mind, has the color and texture of semen. The taste is not awful, however. It has a slightly sweet, nondescript medicinal flavor which is barely tolerable. On a scale of 1 to 10, with 1 being tolerable or water, and 10 being totally vile/disgusting, I would give the Volumen a 3. I rapidly drank all 3 bottles at each timed interval. The radiology tech was very proud that I got all of it down. The key is to drink it fast and not savor the taste.

I got into the MRI room at 9:45 a.m. They then took about 30 minutes of pics of me in the MRI tube. Had to take deep breaths for most of them. Then at about 10:15 a,.m a Doctor came in and said she was going to inject me with a drug that would slow my bowel motility down, called Glucaphen, or something like that. She warned me that with many patients, as soon as the drug is injected, they experience nausea (the radiology tech later told me it is about 50% of patients experience nausea and vomit). They told me they had a vomit basin there if I needed it. But I was a little scared, because if I had to barf while in the MRI tube, it was not going to be pretty. Anyway, she injected the Glucaphen in my left shoulder, and I felt no side effects from it at all. Not even a slight hint of nausea, and I ate a big egg sandwich about a half hour later. However, right after the Glucaphen was injected in my shoulder, the contrast went in by way of the IV, and it really burned, and I also had a burning sensation in the left palm of my hand, that was so weird I made them stop. We then resumed. They took 10 minutes more of pics after they injected the contrast and the Glucaphen.

I was out of the hospital at 10:30 a.m. Total procedure time: 3 hours.

I then drove over to a coffee shop I like at Yale University and got myself a bacon, egg and cheese sandwich on a croissant, a snickerdoodle cookie, and a large coffee. I was starving even despite drinking all of that Volumen. Food went down great.

I will post again when I get the results.

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CTBarristerCTBarristerMember
My Doctor sent me an email asking when he can call me this weekend. I just responded to his email, but I did not yet discuss with him the results.

I forgot to mention one thing about the MRI. It is very noisy! At the beginning of the exam they put ear plugs in my ears. The whole time I was in that machine it was making all kinds of funny noises!!!!!! I felt like I was an astronaut in a spaceship with all that beeping and bonking.
CTBarrister
CTBarristerCTBarristerMember
I just got off the phone with my Doctor and the news does not sound very good, although he wants to review my MRI films with a radiologist that he "trusts" and also compare it to the CT Enterography study that was done at St. Rafael's Hospital back in 2008, to see if there has been any progression from one study to the other.

He said that the MRI showed "significant" thickening of my bowel in the area where my ileum connects to the J Pouch. He believes that this may be due to "fecal stasis" or the stool somehow not passing properly from my ileum into the J Pouch. He mentioned that there is a "narrowing" of the bowel in this area and that may be what is causing the fecal stasis. He said he wants me to get a CD burned of the prior 2008 study and he wants to compare it with yesterday's MRI study with his "trusted" radiologist within 10 days.

Meanwhile, my latest attempt to get off antibiotics while taking Entocort has been unsuccessful. So he told me to resume taking antibiotics with Entocort until further notice. He said that the maximum dosage on Entocort is 9 mg and I will derive no additional benefit by increasing the dosage. He said it may take more time to work on me. So not to give up on Entocort yet.

Needless to say this news has me fairly upset because if this situation is being caused by a structural issue, the writing is on the wall that I will have to have surgery and/or an ileostomy to correct it.

Has anyone else here had an issue like this?
CTBarrister
Last edited by CTBarrister
CTBarristerCTBarristerMember
quote:
Could the narrowing be similar to a stricture? If so, could it be dilated? A balloon dilation?


That's a good question, and I am going to need an answer pretty soon, because this weekend I definitely felt like there was an issue in my gut. No pain or cramps, but pressure in the area of my pouch similar to the sensation of a partial blockage. Stool is getting through, but apparently in dribs and drabs - I am not evacuating completely, multiple bowel movements with very small output compared to my normal BM. I have experienced this sensation before, and it was before my surgical J Pouch revisions in 1998 and 2000 when a "septum" developed in my pouch. I will be speaking to my doctor tomorrow and will ask about the balloon dilation.

He told me that there was a significant thickening of the bowel at the junction between the ileum and the J Pouch and that inflammation, presumably, is what is narrowing the pouch inlet.
CTBarrister
Last edited by CTBarrister
CTBarristerCTBarristerMember
I heard back from my pouch specialist today. He and his preferred/trusted radiologist reviewed my 2008 CT Enterography with the MRI Enterography that was done on July 20, 2012. He said there is not really any discernible change as far as the "segmental thickening" in the area just above the pouch inlet. That is the good news. However I do not recall at the time of my 2008 CT Enterogrpahy being told there was any thickening of the bowel. I was just told that I was negative for Crohn's and I thought they were looking for inflammation further up the small intestine that would be evidence of Crohn's.

My doctor did tell me that this area in which I have segmental thickening above the pouch does not expand. That means that if it gets worse, I am at risk for blockages. This concerned me quite a bit because I did feel blocked up early Sunday morning after wolfing down two hamburgers and some other food at a barbecue party I was invited to Saturday night. Dr. O believes it was what I ate, and to avoid big meals.

On a go forward basis, he wants me to stay on both Entocort and antibiotics and see if we can bring this inflammation down, and then scope me in another 8 months. If at that time it is not better, or the inflammation has not gone down, we can also consider Remicaid.

I directly asked him about scar tissue and balloon dilation. The answer to scar tissue is unknown since these tests do not permit them to see what is going on in the abdominal cavity. He does not think a balloon dilation would assist in this area because the area above the pouch where I have this segmental thickening cannot be expanded. Bottom line is that things can tighten up on me and cause blockages, but they cannot widen the passage, unless the inflammation comes down from medication.

The other question as to whether this is Crohn's based on the pattern of the thickening is one he cannot answer. He said we can continue to suspect Crohn's but he said it would be a mild case as it is only causing segmental thickening in a small area just above the pouch.

So basically nothing much has changed, I have not gotten better, the inflammation is a little worse but the thickening has not gotten appreciably worse since 2008. The hope is that we, through continual medication, will prevent any further worsening. If we don't, I will be prone to blockages and twisting of my bowel a la Maurice Gibb, should this thickening get any worse. Not exactly wonderful prospects to be thinking about.
CTBarrister
Last edited by CTBarrister
KarbearKarbearMember
I was just able to review my recent MRI results and found that I have bowel thickening as well just above the anastomosis line. My doctor never mentioned it in my follow-up. Probably because the reason for my MRI was for a possible fistula. Though no fistula was found, 2 abscesses were. We are still trying to find the cause of the abscessing and I go see the ladie doctor today to see if it might be related to those parts instead. As my surgeon said, "They're not coming from my end." I had to chuckle a bit at that.

My diagnosis stands much like yours. I'm still technically UC, but leaning more towards Crohn's now with the chronic pouchitis that does not totally go away with any medications, and now abscesses. It's a difficult position being in limbo, but I'm trying to take things in stride. Good news is that in the past few weeks I've been feeling the best I have since takedown even with all this going on.
Karbear
CTBarristerCTBarristerMember
Karbear,

Where are the abcesses that you are speaking of located? I am a bit confused.

It seems that a lot of people have issues with inflammation near the anastamosis site. I do too, but my segmental thickening is in the area directly above the pouch inlet. An area which, unfortunately, does not expand.

I hope that your abcesses can be treated effectively.
CTBarrister
KarbearKarbearMember
The abscesses from what I can understand on the MRI report are located between the pouch and vaginal area. There is also a lot of swelling and lymph node enlargement.

I've been feeling much better since I have been back on the Cipro for 3 months, but the doctors are still really concerned as to the cause of the abscesses. It's been very frustrating with all the appointments and no conclusion yet.
Karbear
J jeaneMember
DJB,

I was hoping to get a good report about your symptom improvement on entocort. Like Dr O. explained, it may take more time.

As far as the bowel thickening goes... I have a friend whose daughter had an ulcer at the opening of the jpouch and our surgeon basically bypassed the ulcer and preformed what I would call another reconnect to the opening of her pouch (basically created another inlet I think).

What I am wondering is if this inflammation cannot be controlled to the point of opening up the area of your jpouch inlet, would it be possible to surgically remove(bypass) the diseased portion of the bowel and basically perform another reconnect to the pouch with healthy bowel that is further up your intestinal tract. Because I am not sure about how the inlet is designed per se with a jpouch, I am not sure if this is a viable approach or not.

I have to admit I am bummed about your description of the bowel series testing, especially with the volumun. I may be heading this way if I cannot get some of my symptoms under control. I am currently bleeding at the anastomosis even with canasa and not sure if this is coming directly from my pouch or just the small ulcer I have at the anastomosis.

My next steps are a pouchogram to check for functional issues followed by the small bowel series. Life keeps getting more fun by the day.
If I did not despise the ostomy so much I would just yank this thing and be so over the last year of my life since having this surgery.
J
CTBarristerCTBarristerMember
quote:
would it be possible to surgically remove(bypass) the diseased portion of the bowel and basically perform another reconnect to the pouch with healthy bowel that is further up your intestinal tract.


Since I do have a narrow area of segmental thickening, this is a very good question which my surgeon may have to answer at some point in the future. Fortunately, I am not quite at that stage yet. I seem to be OK since going back on cipro and flagyl last weekend. Maybe the Entocort will need more time. I have been on it exactly one month.

Regarding the Volumen, it's drinkable, but certainly not something you would order during cocktail hour at the local pub. I have had worse. It is served room temperature and not on the rocks, by the ways. I drank it the same way as James Bond drinks his vodka martinis - shaken and not stirred. The bottles can be shaken before you pour it out.
CTBarrister
J JJAMember
I had to chuckle at your description-I had the same test/drinks last fall-pretty accurate description Smiler

I would say definately give the ENtocort more time. I developed pouchitis a year ago last spring, and really deteriorated over 6 months until I was finally treated at May Clinic we started rotating antibiotics and Entocort with a 3 month ween plan (9mg for a month then 6, then 3, thn off. Once I got to 3mg/day my quality of life was in the toilet (pun intended). I went back on 6mg for several months, and then WAS able to successfully ween down to 3mg, where we are just holding (rotating antibiotics and 3mg entocort daily) for now. I definatly needed to be on the entocort for a longer than usual period of time to get inflamation down, since the inflamation had been reamping up for so long.

You've managed so well with chronic pouchitis, I hope to hear that you are able to continue with your pouch. Best of luck-
J
CTBarristerCTBarristerMember
JJA,

Thanks for your post. I am still on 9 mg Entocort and rotating antibiotics and feeling a lot better than I did when I went off the antibiotics about a month ago. I am now coming to the 2 month mark on Entocort and plan on calling my Doc and seeing what the plan is. He wants me off the antibiotics rather than the Entocort and I am not sure if that will be doable. We shall see.
CTBarrister
Last edited by CTBarrister
J JJAMember
Hmm...interesting he'd prefer you on the Entocort vs antibiotics. I feel my doc would prefer me to get off the entocort and stay on just rotating antibiotics (for pouchitis-but of course, I've only been on them a year, not 17), and perhaps the theory may be that in your case the steriod will keep your inlet from blocking, and perhaps as a "side effect" of that treatment, also manage the pouchitis without also needing antibiotics? My understanding is that Entocort is a relatively new, a safer, "designer" steriod with fewer side effects, but thus little long term data available on long term effects and/or side effects when using it as a maintenance drug. Although I know there is a current study looking at trialing it as a maintenance drug for UC, that Mayo is enrolling people in now.

Since my pouchitis was well controlled a year ago on a daily steriod suppository, I have sometimes wondered if any of the good results I've had in the past year have been related to antibiotics at all, or rather just the Entocort, since last Dec when I went off Entocort and stayed on antibiotics, they sure weren't doing the trick. For now, since I am doing well and holding and doc is happy to let me do that for now, I am too nervous to "rock the boat" with any changes to experiment on whether it is the entocort or antibiotics that are keeping me functional. Guess we are all guinia pigs, but I appreciate the sharing of what others docs are recommending and how others are managing that can be gleaned from this site.

Keep us posted!
J
CTBarristerCTBarristerMember
quote:
perhaps the theory may be that in your case the steriod will keep your inlet from blocking


I believe that is exactly the theory. He told me he is more concerned by the narrowing/segmental thickening of the ileum just above the pouch inlet than he is by the pouchitis. I think he would like to see if the Entocort will succeed in reducing the inflammation. I attempted at the 1 month mark to go off antibiotics and take Entocort exclusively, but after about 9 days I was having problems again. Now that I am at the 2 month mark of taking Entocort, he may want to try it again.

I was warned that if it gets worse it could be a real problem as that area of the ileum above the pouch inlet where I have the narrowing does not expand. That means big meals etc. could cause a blockage or even twisted bowel. So it could be a very dicy situation if it gets worse.
CTBarrister
CTBarristerCTBarristerMember
Hi rebe,

I am on antibiotics and have now taken Entocort for 2 months. Honestly I feel pretty good overall but I suspect we will not know if the inflammation has gone down unless we do a repeat MRI Enterography or scope. I do not feel substantially different. The only time I felt really bad was when I went off antibiotics for 10 days at the 1 month mark of taking Entocort and I felt like a blockage might be coming on. Otherwise it is same old same old which is fine.

My symptoms do not seem to match up with everything they are seeing on scope and MRI. And that scares me because I feel like my body is not going to warn me of some impending horror until it's too late. I had this terrible nightmare that I ate a big meal, got a blockage and began vomiting stool. I hope something like this does not happen.
CTBarrister
CTBarristerCTBarristerMember
Just to bring this situation up to date. My pouch specialist advised me today that it is quite possible that the narrowing of my bowel just above the J Pouch is not due to Crohn's disease. He thinks that one possible explanation is that there is an insufficient blood flow to this area of my bowel as a result of my surgery or surgeries, which would explain why the situation has not really gotten worse and has shown no change since being detected in 2008. He also thinks it could be a result of inflammation from bacterial overgrowth. In any event he wants me to try and reduce my antibiotic dosages while continuing on the Entocort, since the rotation of antibiotics one week and no antibiotics the next has not worked (as of my second attempt to get through that regimen last week). He wants to see me back for another scope in June 2013 (1 year mark) at which time the narrowing of the bowel will be reassessed.
CTBarrister
J jeaneMember
Sounds like a good plan. I am sorry you were not able to make it longer than a week without antibiotics. The good news is this will most likely remain unchanged at your follow up scope. This makes sense to me as our specialist feels I am dealing with the same thing in my distal pouch due to the severe cuffitis, inflammation and narrowing of the anastomosis. When I had my last in office scope after a complete fast (not to be too graphic), my entire pouch was clean from residual stool except the very bottom area. Now that may just be the way things work with the pouch and gravity and timing of the procedure etc..but who knows.

I truly trust our specialist. I think if you can lower the antibiotic dosages and the entocort helps that is a good plan as I know he would prefer we be on the least amount of antibiotics as possible. He has highly recommended I be seen by Cleveland next month and just recently helped me with a switch to another antibiotic when I was in pain and misery the other day with no response from the surgeon's office. I have since learned that the GI is the go to person for meds and adjustment dosages and the surgeon is there if meds fail you.

I hope this new plan continues to keep you feeling well and you have positive results to post in June.
J
CTBarristerCTBarristerMember
Thanks Jeane. I have informally experimented with decreasing antibiotic dosages in the past and it seemed that when I got down to 500 mg of cipro and 500 mg flagyl daily that is when the problems started. He is giving me a script for 250 mg tabs so I can go down from 1000 mg of each in 250 mg increments and see what happens. What I am going to try and do is take a lot of probiotics when I lower the antibiotics. I noticed that I did better in my non-antibiotic weeks when I took higher dosages of probiotics supplements and yogurts. So I am hoping that approach will allow me to get down to 500 mg with no problems.

Overall I feel pretty good and have had no real change in my condition as long as I am on antibiotics.

By the ways, effective November 1 my firm goes to Anthem as our health insurance HMO and I am greatly relieved that our GI is on the plan. I would not want to lose him, I have total and complete confidence in him and think he is a great doctor. I feel really lucky as I have had a succession of good GIs and good surgeons to take care of me and I had confidence in all of them.
CTBarrister
J JJAMember
That sounds very promising that perhaps the thickening has always been there and just not previously detected, and is not increasing or worsening!

Are you staying on the full dose of 3 Entocort/Day? I had weaned down to 1 Entocort/day, along with still rotating my antibiotics and did great for about 5-6 months over spring/summer, and then the pouchitis reared it's ugly head again last month. As per my usual, I was in denial for about a month before I called the GI, and am now back on 3 Entocort/day for the last 10 days. Things are better, but not totally, and it usually takes me a full 2 weeks for the meds to ramp up in my body.

Anyway, I am going for the usual course of 3, down to 2, and then down to 1 to see if I can hold at that level for awhile, again. I have never used antibiotics without Entocort, except for a couple weeks when I tried to get off Entocort completely following my first 3 month round of weening off, and I was misserable. I can't shake the nagging feeling that they are doing nothing for me, and that only the steroids are helping (although I really don't want that too be true, since chronic antibiotic-resistant pouchitis is even scarier than run of the mill chronic pouchitis, to me), but I am also too nervous to rock the boat by decreasing them. I keep hoping to be good and stable for 6 or 8 months so I can then try to tweak things a bit, but have just had too many variables lately.

I guess my question is if your docs plan is to keep you at the full dose of 3/day until next July? I noticed some very minor steroid side effects, such as peeling fingernails, a little facial acne, and more peach fuzz on my cheeks than usual-all very, very minor, and no where near the side effects due to prednisone, but noticable enough that I can say for sure that while Entocort may not be nearly as systemic as prednisone, it DID seem to show some very minor systemic absorbtion which concerns me a little regarding long term use. But it works SO WELL for me, it would be hard to give up if nothing else is.
J
CTBarristerCTBarristerMember
JJA,

Thanks for your input. My Doctor seems to want me to wean antibiotics down rather than Entocort. I have the opposite unshakeable feeling as you do, that I would be dead meat without antibiotics, but I would get by if I took antibiotics with no Entocort (as I did for 17 years, before going on Entocort in June).

Regarding your reporting of side effects of Entocort, I have some minor issues with acne which preexist Entocort but flared recently. I also went for an eye exam last week and although I have a diagnosis of CSR (Central Seruos Retinopathy) dating back to 2009, the retinal specialist told me that some fluid blisters noted in my right eye (which were not too close to the retina) may be due to the Entocort. He said the Entocort may not help the CSR situation I have. Other than these issues which may be non-issues, I have not had any problems with the Entocort that approach the issues I had with Prednisone.

My doctor's current plan is to keep me on 9 mg of Entocort daily, and wean me down (but not off of) antibiotics until next June's scope. The next step he wants me to do is go down on the flagyl from 1000 mg to 500 while taking 1000 mg cipro and then report back to him.

When I rotate onto xifaxin and then augmentin we will discuss incremental reductions of my dosages of those antibiotics.

Thanks again for your input.
CTBarrister
J jeaneMember
DJB,

Report back on the augmentin rotation. I went almost 19 months on it with pretty good success with no side effects. Maybe you can take that one for a longer period of time as the side effects seem less even though it is a big gun antibiotic.

After my issue with Cipro last night our GI said to stop it and restart it the next day (today) and get some benadryl in case I have a reaction. I have gone almost 14 hours with no antibiotic and although I had a little nausea earlier, I seem to be ok so far. This is my test to see how rapidly I decline as I never make it more than a day or two in the past. I am afraid to go back on the cipro until my husband returns home tonight in case I have that weird tight throat issue with severe lightheadedness like I did yesterday.

Also, do you know why they prescribe cipro and flagyl in tandem and not just the cipro alone?

Let's hope your plan is successful and you can give your body a break from the antibiotics a bit also.
J
CTBarristerCTBarristerMember
quote:
Also, do you know why they prescribe cipro and flagyl in tandem and not just the cipro alone?


They seem to work well in tandem or as a duo, like Abbott and Costello, Martin and Lewis, Simon and Garfunkel, and Hall and Oates (not to mention Laurel and Hardy and Penn and Teller Smiler) . The efforts of the duo seem to outstrip the solo efforts of each partner. I am not sure why.

Cipro/Flagyl in tandem are my most powerful antibiotic combo, followed by xifaxin and then augmentin. All of them work, but augmentin is probably slightly less effective than xifaxin.
CTBarrister

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