• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Rowan's Pouchitis

Of course just days after posting a success story.... The symptoms start.

Rowan started having frequent BMs, pain and low grade fever. (Sigh). Called the clinic they called in some Flagyl. (Assuming pouchitis) Today is day two taking it and she is very distended and has a hard belly but she is still having BMs... 4 today but I haven't heard any gas. I feel like it is starting all over again. Totally freaking and psyching myself out. Gosh I don't understand why whenever this kid takes an antibiotic she gets soo constipated. I wish we could just avoid the hospital for 6 months, all I am asking for is 6 months. Is that too much to ask? I am going to try to self treat it here at home tomorrow with the liquid diet... Water, Gatorade, Grape Juice, and Popsicles.

Will keep you all posted. :(
 

Crohn's Mom

Moderator
6 months is definitely NOT too much to ask !

Goodness Mary, I am so sorry to hear that Rowan (and you) are going through this again ~ you so deserve a much longer break than 6 months !
:hug::hug::hug

Best of luck with the home/mom treatment ~ I wish my kids would listen to me when I want to try out things like that !
:Karl:
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I was hoping to not read anything else about Rowan on here for a great long time!

Other than a quick search, I don't know anything about pouchitis, or j-pouches for that matter, but I wonder if the colon targeting budesonides might be effective in treating it? Has it been tried? I hope your holistic approach works Mary!!
 

DustyKat

Super Moderator
Oh no Mary, :( , I am so, so sorry to be reading this! :ghug::ghug::ghug:

It is little wonder you are so heartbroken and beside yourself hun. I so hope the meds can pull things back into line and fast.

Good luck and sending tons of wishes and healing thoughts that you can stay at home!

In my thoughts. :heart:

Dusty. xxx
 

Tesscorm

Moderator
Staff member
So upset for you!!! You and Rowan truly deserve a long, long break for all this! :ghug:

Hoping too that that all turns better for her soon and this is just a very small blip!

:ghug:
 

crohnsinct

Well-known member
Oh Man Mary! I so feel for you. Just when you allow yourself to relax and post the good news this happens. It is no wonder you live life looking around every corner. Poor Rowan. I really hope this passes quickly and is easily treated.
 
Oh Mary...

You must be beside yourself to see this cycle starting again for poor Rowan. I pray it passes quickly, the Flagyl does the trick, and she can start school with all of this behind her.

(((((Hugs)))))))
 
She seems a bit better. I say that but I have said it many times before. She seemed to get a lot of the gas out during the night when she uses the toilet. Skinny again (but still has obvious gas) by morning but if the trend ends up the same I will know tonight. I hope it doesn't happen again with the evening distention again. That is exactly what happened for a month in December before her other two surgeries. I hope adhesion have not run amuck again. Thanks everyone for the support.
 
I was hoping to not read anything else about Rowan on here for a great long time!

Other than a quick search, I don't know anything about pouchitis, or j-pouches for that matter, but I wonder if the colon targeting budesonides might be effective in treating it? Has it been tried? I hope your holistic approach works Mary!!
Not really a holistic approach just the typical partial blockage steps most j-pouchers do. Avoiding food for 24 hours. She is taking the Flagyl for the pouchitis. I do know they use budesonides for pouchitis but only when the anti-biotics don't help anymore. I was so bummed because she was taking 450 Billion probiotics daily to avoid the anti-biotics. Hoping my fears don't come true.
 

my little penguin

Moderator
Staff member
What about the higher probiotics next time?
DS takes the vsl#3 DS version (900 per packet )
X2 a day for a month then is going down to one packet . He has lots of rectal issues
It is prescription only.

Hope the liquids plus abx do the trick
 
She is distended and hard again. I know this sounds crazy but could swollen intestines or excessive gas be a side effect of the Flagyl? I can't find anything on the Internet. Just seems weird that after one day of being on the a flagyl this happens. Today she has only had two glasses of grape juice, water and yogurt and she is already getting huge again.
 
So sorry you guys are dealing with this again! I really hope that this is a minor bump in the road and that Rowan is feeling well soon!

The prescribing info for flagyl says "The most common adverse reactions reported have been referable to the gastrointestinal tract, particularly nausea reported by about 12% of patients, sometimes accompanied by headache, anorexia, and occasionally vomiting; diarrhea; epigastric distress; and abdominal cramping. Constipation has also been reported." It also says people with crohn's have more gi side effects with it-- no note about folks with UC. It doesn't specifically mention gas or ileus but who knows for sure.

(((HUGS)))
 
Spoke with the clinic nurse. She called her surgeon and they said to stay the course with the Flagyl and give it more time to work. They don't think I should adjust her diet much beyond the fact that I know what she can tolerate. Lovely, she isn't tolerating liquids too well at this point so what do they expect me to feed her??? I have like 6 Nutren Jrs left and then my supply is gone completely. Would have to get a prescription and a prior auth to get more. I hope I can resolve this without going to the Hospital.

Irritated again.
 
I will have to get a job if we will have to start paying for that and I am supposed to start back at school in Sept. :( total BS that it is OOP. Trying to find some light in the darkness. Boy oh boy I had been feeling great but I tell you this worry kicking in out of no where is not good for me at all. Felt like I was going to have a panic attack earlier. Have to remember to breath and not to google google google so much. My brain hurt.
 
Very thankful I got a call today saying we got the prior authorization for Rowan's VSL3 at 4 capsules a day for another year. I was getting a bit stressed out over how we were going to come up with the money. Being as we pay for that secondary health care primarily for this purpose. Something good happened.

Rowan seems less distended today. Still is distended but I was pleased to see it go down and hearing her pass gas with my ear to the door. She is not burping as much today either. She did pass some coffee grounds looking stool last night so I think there was a ball of stool stuck in her intestines. Still sticking to soft foods and loads of liquids today. But if feel a little better I was about to change my picture back to the break stuff photo I had for so long.
 
I'm glad to hear the update.:hug:

The interesting thing with Grace is we have to 1/3 her pro-biotics.
I was giving the full dose but she would build up with gas.

She also builds up with gas but I can vent her g-tube and get it out.
I'm thinking about getting one for every family member. :eek2:
 
Well today is day four so hoping it stabilizes. Doctor wants me to still give high doses because the probiotic is what stops the pouchitis from occurring. She wants her on the therapeutic doses especially now while the Flagyl is killing off both good and bad bacteria.
 
She got very big to the point to where she couldn't get around anymore. My mom had her today and she was with her for 6 hours and she never had a BM. When I saw her belly I about had a stroke. I made her go to the bathroom and it did help but that is so scary. She was very distended and her belly was hard. She is much softer now she finally got the gas out, but it just confirms that I cannot let her out of my sight right now. Gosh I hope I am just seeing side effects from the meds and this is not something bigger going on. I have my gut feeling and it doesn't feel to good right now. Trying to be patient and let the meds do their thing.
 
Well doctors wanted me to keep her on the Flagyl for 10-14 days and a minimum of 7. Today is day 8. She is so distended, I am stopping the Flagyl to see if it is a side effect. I cannot just leave this to chance and risk her getting a mobility issue because of repeat dilated small intestines. It is all gas and for some reason she doesn't pass wind during the day ever since we started the antibiotics. Hoping and praying this pouchitis doesn't flare up again in the meantime? The other kids on the group I started do a 7 day course with success. So I am hoping we can as well!
 

crohnsinct

Well-known member
Mary! I don't know what to say. Well, yes I do! I just don't know what to say that is printable on the forum. I will be praying tonight that you are wrong and boy would you like to be wrong this time!
 
I wrote back saying yes the original symptoms of increased stooling and belly pain subsided soon after taking the Flagyl. Since starting the Flagyl she got the new symptom of distention/bloat and since stopping Flagyl this symptom is still present. I don't want to restart the Flagyl, I want to know why she is so distended.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
So they're leaving the decision completely to you?? I know you should have final say but they could at least look at her b4 making a recommendation.
 
Part of me just wants to jump in my car and drive to Cleveland, spend the day at the rock and roll hall of fame and feed her. Then pop into the Cleveland Clinic ER when she gets distended by 5pm. Her belly is down today. I am going to follow the advice of a vlogger today. No food or drink except sips for dehydration for 24 hours, with heating pad. Unless the doctor calls me with an idea that is better. She woke during the night and finally got some gas out. This has been going on now for 8 days straight.
 

DustyKat

Super Moderator
Ugh Mary! But hoping this gives you the answers you need but not the ones you fear! :ghug:

In my thoughts, big time! :heart:

Dusty. xxx
 
Theatre tomorrow 7:30am for scope and rectal dialation. There are no rooms available, told I might be in ER for a day or two. Ugh!

Small bowel is extremly dialated. Switching to IV zosyn, no more Flagyl for Rowan. So far all tests point to rectal anastamosis site. Hasn't emptied bowels completely yet from barium study. On only clears now NPO at midnight. All tests are normal but WBC is slightly elevated. 16+
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Good for you Mary for not pussyfooting around. You've been through so much! Rowe is so lucky to call you Mom!!
 
Her surgeon actually acted like she thought the dilation just started after ending Flagyl. I reinterated that it has been ongoing since the start of the Flagyl 10 days ago. Cannot even believe after all the phone calls and the emails that she was misinformed so much. Makes me nervous about calling the clinic. Waitin in waiting room now hoping to have some clear answers soon.
 

Tesscorm

Moderator
Staff member
I'm so sorry you're back on this rollercoaster! :voodoo: Hope you get some answers soon! Lots of hugs! :ghug:
 
Well I just had the consult, the surgeon did not see pouchitis, nor did he see a reason for her small bowel dilation he took some biopsies, decompressed her intestines and dilated the rectum though she did not need it as he considered her wide open. They are thinking she developed a motility issue. I guess the previous dilated bowel never really returned to normal. He is not stating any reason as to why this is. My guess would be is the let it get so bad last time it will never be normal. I don't know what we are doing from here, he said he would let Rowan's doctor make that decision. Since there still are no rooms he wants to switch her to oral Cipro and feed her and see if she gets bloated again. I am sure she will, as they didn't really do anything to stop it from occurring and if she doesn't have pouchitis the Cipro is really over kill. Just doesn't make sense that two weeks ago she was doing great and now we are in this bad place. If she tolerates the food they want to send us home. Doubtful.
 
Just going to toss a wild card out there, but could it be that new cyclospora bug that the CDC is watching? Have there been any cases in MI?
 

crohnsinct

Well-known member
Damn! And no balls to put in the vice! You stick to your guns Mary! They should have your picture posted all over the place there. "Brilliant Mom"!

Love the straw grasping Mehita! Good to see you are minding things while I was away.
 
Yes well her surgeon was not surprised with that they didn't find anything in the scope today. They did take tissue samples from high up where there was dialated bowel. Wondering if they can test these samples for mobility issue? Anywho sorry my ADD is acting up again.... Her surgeon is thinking something is off said she has been perfect for 6months then this happened. The fellow says well she wasn't perfect for six months. And I said we'll she had dilated bowels in the beginning (they told me this would take months to dialate down) and she took thoughs words said so see she wasn't perfect and then they rush out of the room. I couldn't get a word in. Makes me so mad as I was very tired from sleeping in the ER chair all night. Now it is after midnight and I cannot sleep because I am angry. I think if deem this motility, we will be sent off for a second opinion. Which I am fine with so long as they work it all out with the insurance and transportation. We are so broke right now, I really don't know how we can swing it. I think her doctor wants to go back in, but she is being challenged by this fellow possibly and the other attending. I feel like this woman just kinda pushes us aside, with the damn smirk on her face. I might go postal. I hope to keep my cool.

FW, Rowan is handling things well for what she went through yesterday. She had a rectal exam, then tried to decompress manually via red rubber catheter, then an enema study followed. So it was a tough day on her. She is eating and seems to be ok but I think thing will start to dilate again soon. :(. I cannot even believe we are here again. If I have success again we are not posting it because whenever I as something good things go terribly wrong.

We finally got a room this afternoon.
 

DustyKat

Super Moderator
Tell the fellow to go root a boot!...That way you get to insult her and feel better and she doesn't have a damned clue what you said, except it must be bad cause you are yelling and pointing your finger at her. :ybiggrin:

Oh Mary...:ghug:...thinking of you both so much! :heart:

Dusty. xxx
 
They just shut off her fluids. I think they plan to send us home. They have not even came in and assessed her yet. I feel like they are wiping their hands clean. Making a clean break.
 
Have you checked in to medical rides yet? It for families with no transport and or limited funds.
A family member gets medical rides for her son form a volunteer group of first responders/medical trained people do.
These wonderful volunteers use own cars and time to transport people all over the state to different hospitals. Sometimes Insurance companies will reimburse these people but not to often.
Let me know if you want to get the name of this group

Remember if no hospital in MI can treat Rowan, then our (we both have it) special Insurance said it WILL cover an out of state hospital. Grace's GI said at the being of her care that Cincy was the nearest place for motility disorders.
Grace's case worker said it might take a couple weeks to get approval.

Hugs to you both.:hug:
 
It sounds like she was doing really well before this recent episode- doesn't that speak against a motility disorder? How similar is this episode to the one some months ago when she was found to have adhesions causing a partial obstruction?

Hoping this gets sorted out very quickly and she is feeling all better soon!
 
Xmdmom, you are spot on. They the attending and fellow came in and said after review they do not think dismotility due to her last 6 months being so uneventful. The put her on Cipro for the possibly SIBO. She hasn't went poop really today. Awaiting that now. She is tolerating food, she seems ok, belly is bloated but soft. We have a follow up with her surgeon on the 1st. We should have more answers from the biopsy results. We are home now, I think soon to be back as an inpatient again. I need to talk about the second opinion with her surgeon want get her onboard which I do not think will be a challenge bc she had said she would last time. Hoping we make it to Aug 1st appointment without having to go through ER. Time will tell. They did dialate the rectum so they think this might help as well. Also as they did a decompression they said if by chance this was a twist they hope this might have untwisted it.
 
Glad to hear it and hope it stays that way!

Did she have any symptoms of a virus during this time or any meds, supplements added coinciding with the beginning of the recent problems?
 
Must have been the calm before the storm. I can watch her intestines move, like when I watched her when I carried her pregnant. She does have some distention today. Idk doctors appt soon.

Xmdmom, yes, fever, abdominal pain, frequent diarrhea.
 
In reading all of this stuff. I am finding mono info then EBV them CMV all relating to dysmotility but then I found the black box Remicade warning associated the EBV Lymphoma. Very scared now. I haven't said it out loud... I soon will be to my daughter pediatrician. I cannot let my mind wander but omg I will hate myself I'd the few injections of remi I approved did this. Totally freaking out now. I feel sick to my stomach. This cannot be happening.
 
Just sending you a hug. I have been off for a few days. Just got back from my parents in upstate New York. I am trying to catch up. I am praying you get some answers.
 

Tesscorm

Moderator
Staff member
:ghug: Mary, I totally get your worry! :( But try to stay calm. :ghug: I know it's next to impossible to stop your mind from racing but, kids (with or without remi) do get viruses and swollen throat lymph nodes and, I know these symptoms are coming at the same time as these other complications but, would it be unreasonable to think that a virus could trigger more complications (and I don't mean to the degree of EBV lymphoma) in Rowan than the next kid?? :ghug:

Have they done all the tests for the viruses and when will you get the results back?


MLP, not that my mind's racing at all :redface: but why was EBV tested for on your son? Should it be regularly tested?
 
Last edited:
NO words of advice. Sending you a hug. ( For some reason there is no hug button evident any more.)

When you hear hoofbeats it's usually a horse. An enlarged lymph node in the neck is usually a minor viral upper respiratory issue.
 

my little penguin

Moderator
Staff member
Tess-
HE got very lethargic one evening, had stomach pain , nausea, but didn't want to stay awake at all for us. - no fever
on call GI had us take him to the ER for EBV( mono spot) and strep test since he was on remicade at the time and they stress he may not get a fever.
He had multiple fevers the three "other" times he had strep while on remicade:yrolleyes:

ER wasnt happy - he was awake and alert after the VERY LONG drive in ( Plus long walk from the car to the ER:ybatty:)- didn't even make us wait for results - they took blood and sent us home.
needless to say - he was negative.

so you dont need to be tested for it.

just take notes - as to whether your kiddo runs a fever with illness while on remicade.
 
Xmdmom,
I get that I know that... I just want to know. Ufortunatly a minor virus can give her an psuedo obstruction for months. She is getting distended and we will have to take her an have her decompressed again. We know how much she loved the gigantic NG tube they gave her. I don't get why she cannot get her gas out. I just want answers and everything takes so freaking long. Meanwhile I have a kid whom has only a small intestine and they are swelling to the point that it looks like a colon on X-rays. I am worried we are going to lose her small waiting around for tests and biopsies. I know what losing the small means and the outlook is bleak and short lived. Waiting is just not part of the equations.
 
It is just odd. The whole virus and gut dysmotility at the same time. Are they related or is she having an adhesion type of obstruction. Why can't anything ever be a simple diagnosis. These month long hospital stays are too much. I know how I can't get like chicken little... The sky is falling! I just don't know how to cope well anymore.

She is also on Cipro and possibly has mono and is running around??? The whole cipro caution about no exercise due to tendon rupture and she is a toe walker already. Then the spleen thing which I knows goes back to normal but still if it is enlarged she is suppose to take it easy. DH is being Disneyland Dad. I am annoyed by this... Like why do I ALWAYS have to be the bad guy. I have told him to keep her tied down. Frustrated.
 

Tesscorm

Moderator
Staff member
You have so much on your plate! :ghug: It's no wonder with everything that has gone on with Rowan that you want clear answers, not a vague 'maybe' and 'let's just see'. Be easy on yourself... I know when I'm tired and scared, my emotions seem to be so much more sensitive, so much closer to the surface, it takes nothing for my thoughts and emotions to run crazy.

I know you've heard this a million times but, really you've done a great job and are still doing a great job!!! As soon as she sleeps tonight, please try to get some rest!! I imagine your husband is with your other little one, is there anyone else you can call to keep you company, even give you a 10 or 15 minutes break? I wish we were all closer... :ghug:
 

crohnsinct

Well-known member
Oh man Mary! Who wouldn't feel the same way given all you have been through? I think you are doing a phenominal job keeping it all together. I also wish we lived closer....although that might not be a good thing. You probably have to be sober when the doc calls with results. I am praying for all the best!
 
I hate that you are going through this again. I am a worrier and I completely get how you're thinking, especially after all that Rowan's been through. Have you shared all your specific concerns with her doctors? Her doctors should be the ones who are worrying and researching and figuring this out, and clarifying things so you don't worry as much.

Sending lots of positive healing thoughts her way!
 
Last edited:
So I just talked with Rowan's Surgeon. She doesn't want Rowan to suffer for a month again like in December. She said she wanted to bring this up to me and not spring it on me tomorrow. She has OR time available on Friday as she thinks this is adhesions, she is unsure of she wants to go in laparoscopically or ex-lap. She wants to avoid more adhesions but at the same time she wants to also see everything. If she finds something obvious she will fix it if she finds nothing she wants to give Rowan another loop ileostomy and let things settle down a bit.

The alternative is going to Mesalamine Enemas to try to take care of the inflammation in case the Antibiotics are causing this. The issue being Rowan was deemed Mesalamine intolerant when she had UC. She said this shouldn't be the case now. She doesn't think this was all caused by a virus, she thinks this is the same thing that happened before that she has adhesions.

Thoughts?

If we don't do this on Friday another surgeon can do it but I don't feel comfortable as we have had bad luck in the past with other surgeons. Otherwise her next OR time is Aug 14th.
 

crohnsinct

Well-known member
So sorry to hear all this! IDK what I would do about surgery...probably opt for the surgeon I knew and trusted and hope for the best over the next two weeks. But I haven't been through the ringer like you and Ro. :kiss:
 

crohnsinct

Well-known member
Wait. Confused. If it is pouchitis is the surgeon still thinking adhesions? Does she still need surgery for the pouchitis? Sorry you don't have to explain to me. Maybe I will give google it's daily workout.
 
I know it is all so confusing. To unconfuse the situation...

I did my homework.

I am waiting for her Pediatrician to call me back and give me her opinion. I also have a call into Cincinnati Children's Colorectal Center a surgeon Dr Frischer is going to call me back whom is THE specialist with UC surgeries and is listed as a Top Pediatric Doctors in U.S. News & World News 2012.

I was surprised when I called and asked to speak with a clinic nurse they told me this doctor would be calling me back instead.

Hoping he does the surgery if it is needed. Don't get me wrong I love Rowan's Surgeon, it is just the timing might not be right and I feel very rushed.
 
OMGoodness Mary. How did I miss all of this. :( so sorry Rowan and you are having such a horrible time. Really hope you get your call back soon and she gets sorted out. Big hugs xxx
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Did you get that call Mary? If you don't get it tomorrow, are you going to go ahead with the surgery? Such a tight spot!!!
 
Just sending hugs. It's been so tough for you guys. I am so glad you will be speaking with Cincy hopefully they will have some good answers!
 
Top