Going to start with apology for long post but I am seeking out some advice so I need to give you some history. My 14 year old daughter has had her pouch now for 2.5 years. She had her ileostomy for 6 years with no issues. The first 2 years with her pouch were relatively uneventful. No more blood in her bowel movements. She felt well and her biggest complaints were mostly gas pains. At almost 2 year mark she started complaining of stomach aches and feeling like she wasn’t completely emptying when she went to the bathroom. She saw blood in the toilet a couple of times. At that point, I followed up with her surgeon and they set her up for a rectal dilation that was done under sedation. He said it was a considerable stricture she had at anastomosis. She was quite sore recovering from that but after healing she felt much better with her bowel movements and stomach aches resolved. Her normal # of bm in day is 6-9, depending on what she eats. About 3 months later she started with the stomach aches again so I followed up with both g.I. & surgeon. Labs were run and her fecal calprotectin was at 99 and her other levels were in normal range so they thought it was a stricture. Saw blood on occasions but never mixed in with stool and she was told that she may be straining and that it is not pouchitis because she would be going to bathroom many more times than she does. So, her surgeon set up for dilation again. This time he said that the stricture was not that bad , it was not like the previous one. He also said that her pouch looked healthy & didn’t have obvious signs of inflammation. He recommended she start pelvic floor therapy which she just has started. She felt better after that dilation but still has continued to complain of these ongoing stomach aches in center of her stomach area on occasions. Now last week, she tested positive for COVID but was complaining about these stomach ache about a week prior to testing positive. She has had stomache pretty much whole time at a 6 pain level. She is seeing the frequency of blood increase and I am freaking out because to me blood = inflammation. She went from a perfect healthy 4.5 year old girl to a very sick girl in the span of 6 months and had to have her colon removed at the age of 5 from severe refractory UC so I am somewhat traumatized by that whole experience and do not take any of her symptoms lightly. I called both doctors yesterday and GI asked me if I called the surgeons office- I said I hadn’t because I felt it is GI related. I had asked if they can set her up to be scope and at this point they do not think she needs it. Her surgeon responded that they thought it was GI related. GI responded later that let’s see if she feel better after recovering from COVID and if not they would treat her with antibiotics - Cipro. I am so nervous that she has I inflammation in her GI. tract or in her pouch and no tests are being run or anything. All I know is that she is generally not well. Her covid symptoms were mild- mostly cold symptoms which I think she is feeling better from. She has also had less bm’s the past couple of days I am thinking because she has not had appetite and is not eating as she normally does. Not sure of what to make of symptoms or what she even has. I am asking you fellow jpoucher who have had more experience with this and what your thoughts are. Please advise.
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I would try Rifaxin but I think you see another Gi What state are you in ?
This sounds very hard - I’m sorry you (and she) are going through this. While I can’t sort all of this out, I can help a little. Pouchitis doesn’t usually include bleeding, though it sometimes can if (for example) an ulcer opens up a small blood vessel. Pouchitis doesn’t always cause many bathroom trips per day, though it usually causes an increase in the number. It’s probably best to wait until the Covid-19 has run its course so they are more likely to be able to figure out what’s going on. It’s so hard to watch little kids struggle that it can challenge our patience, but it’s usually best to take our time and give conditions a chance to either clear up on their own or stabilize into a pattern that’s more straightforward to diagnose and treat. I hope she does very, very well.
Ron, i’m in nyc . She goes Mt. Sinai, one of the top ibd center here.
So I’m guessing by your response an antibiotic would be the first course of treatment for pouchitis if that’s what it is.
Scott, thank you. I realize that I am overly reactive being a parent and the doctors are doing their job which is staying calm and listening. My daughter’s G.I. said that she won’t experience what she did as a little girl because she has no colon. I guess that for now I will monitor her symptoms and wait for covid to be out of her symptom and see. I see from your signature that you deal with chronic pouchitis and have it controlled with Cipro & flagyl so that is comforting to know it helps.
i’ve also tried to cut out inflammatory food from her diet. She was surviving mostly with crackers, toast, bland pasta, and rice last week most of which have gluten. I will try to give her higher protein foods and keep her away from gluten as much as I can & see how it plays out.
I would really work on her diet. I would really try kombucha and monolaurin pellets.
if u prefer u can text me 708 878-2836. I feel I am pretty educated with this. I would try to help if I can
I typically never see blood with pouchitis. Pouchitis is a different form of IBD than ulcerative colitis, from which I had copious amounts of bleeding.
My mom instinct is telling me something is wrong. I am calling her doctor and am going to demand she is scoped first before any treatment. I don’t think this is unreasonable. The amount of blood I am seeing is increasing. Diet will be the long term goal, I know she need to work on that. I understand a doctor prescribing antibiotics or other medication when it is obvious or patient has a known history of the condition. However, in her case, this is the first time this is happening. I am also wondering if this can be linked at all with her period which she has right now. I am sure the bloody mucuous came from her behind and so is she. Based on what I have been reading here and with patients experience, I am not certain it is pouchitis. Everyone thinks that because it is common with a Jpouch. But the blood is definitely there and it is increasing. Wondering if it could be her rectal cuff- but I know they left the smallest amount they could and she had a stapled procedure.
You may be on to something, mom. Even a small cuff can develop cuffitis and will bleed. On the other hand, bleeding can be related to frequency and straining whether because of a stricture or a mucosal prolapse, with symptoms that can mimic cuffitis. The pouchosopy would rule out one or the other. Treatment differs depending upon what's going on. Lucky you are in an excellent place for care. With your careful observations and experienced doctors, it should get sorted out.
Sorry for long post - I can't believe that this is more than a month ago and it is still not figured out. I am so stumped on this. They set her up for a scope finally but gave me a date of June 23rd initially. Since last month, she has started taking antibiotic Cipro. Initially, with the first round of 10 day antibiotics she started to feel better on day 7 where the blood and stomach aches went away. Her doctor did not tell me to continue so she didn't. 3 days later she started with the stomach aches and seeing bloody mucous about once a day with her bowel movements. Spoke to her GI and was told that some patients need to be on antibiotics for longer. It was at this point that her GI finally suggested getting on the schedule for scope and also running a fecal calprotectin test. So back on Cipro she went and had her stool test to the lab. I was very surprised to see that her calpro test came back at 39, a very low level of inflammation. Her previous level was at 99 about 3 months prior. At the time of the test, I suspected it as being low since she already completed the first round of antibiotics. This level really confused me if pouchitis is indeed what she has. I don't think that is what it is as she has not experienced any urgency, diarrhea, incontinence or any of the typical pouchitis symptoms other that the bloody mucous with bowel movements. I started her on 2nd round of Cipro and still kept on pushing for scope to be moved up. I hoped she would experience some relief like she did the first time. This time around 8th day she stopped seeing blood but her stomach aches never stopped. What also started happening is a slowdown in the number of bowel movements she was having. She felt like she had to go but nothing would come out. Her typical # is 6-9 and she went down to like 4. She still had appetite and able to eat. By the time she finished this course of 10 day Cipro she was going less and less. Even the quantity of her bowel movements got less. I wanted to have her seen by GI but she was not in so we went to Emergency Department to have her evaluated. I was worried about the j-pouch being at max capacity. Still concerned for reoccurring stricture at anastomosis. Her blood work looked good as far as hemoglobin and inflammation markers. The surgical doctor was able to assess that she did not have a stricture at the rectal cuff. The abdominal x-ray showed her pouch was full of stool and they discharged her with a constipated diagnosis. Her scope was moved up to 5/19- next week. But she is still experiencing the constant stomach aches up high in center of stomach area above belly button. Although she had a few days with no blood at the end of Cipro 2nd round, it started up again. She went 1.5 days without Cipro between round 2 and round 3. The blood seems to be increasing. She is seeing it on more occasions and much of her time spent on bathroom is unproductive. I have been giving her 2 capfuls of miralax when she gets home from school and that has been helping her go. I have been making her juices to relieve constipation and food higher in soluble fiber to help too but I think the miralax is largely responsible for some type of relief. This scope can't come soon enough!
I will add that she has a hernia repair done at the stoma site this past october. It was an open surgery since plastic surgery was done at same time to improve the scar she had. Surgical mesh was used at the repair site.
Totally stumped here- I just keep reading articles and other posts and calling her doctors on a daily basis trying to find the answer. Wondering what other longtime j-pouchers think.
Cipro often thickens the stool, so without any particular treatment effect that could explain the reduced frequency and the constipation. The constipation also causes a bellyache, but I think you reported abdominal pain well before the Cipro. This all could just be cuffitis, which often bleeds and is generally treated with mesalamine in some form (Canasa suppositories, Rowasa enema, …). If it’s cuffitis then it’s not too surprising that the Cipro helped a little. Good luck getting a diagnosis and proper treatment soonest.
I have had Pouchitis and symptoms vary - but from what I have experienced- was no blood - ever. I am not sure, but I think blood in the stool is not a hallmark of Pouchitis. I guess if the inflammation gets bad enough it could ulcer and bleed. Cuffitis seems to sometimes be associated with bleeding, but that would not explain the high belly pain. A scope would be key here. I would assume a topical treatment could get the cuffitis under control if that is the culprit.
Scott, yes my initial thinking is that the Cipro is thickening her stool and making it more difficult for her to empty. As you said that could be explaining what is happening. She was experiencing stomach pain well before starting the Cipro- which is why I think a scope is of utmost importance. She will also have an upper endoscopy same day a pouchoscopy.
Doug, I agree- I don’t think blood is a hallmark of pouchitis. I believe it can happen but my gut is telling me that is not what she has.
I really think it is either a stricture or it’s cuffitis. Not surprising because her rectum was so inflamed by the time she had a colectomy. She also had bloody discharge in the time period between first surgery and 2nd. Her surgeons offered to examine her under anesthesia before Thursday since he is not confident in Emergency room doctors evaluation she does not have a stricture and her symptoms present as such. However, I really want her GI to scope her and take biopsies. It will be more thorough than if he does it.
It will be an uncomfortable couple of days for her 😞
I think you are on to something here. I have cuffitis (I was a long term UC in the rectum sufferer). The scope plus biopsies is the only way to determine cuffitis and treat it properly.
Once my pouchoscopy biopsies came back with UC, my GI and I decided to treated aggressively with daily canasa suppositories. This stopped all bleeding and reduced my BMs to about 4 a day.
I do not ever want to have to operate down in that area again, because if inflammation from cuffitis goes unchecked, I could wind up with dysplasia in that area and lose the pouch.
I believe your instincts are correct for your child and by having the right people obtain the most accurate diagnosis you can help ensure your child has a life that lets her maintain that pouch for many years to come!
I just wanted to update on my daughter’s scopes done today. So I was right that she didn’t have pouchitis and thankfully she doesn’t have cuffitis or strictures. All good news! However, she was not able to explain her blood with bowel movements. She thinks she may have irritable pouch syndrome and possibly some pelvic floor dysfunction. So now I have to research another condition
I’m glad you’ve been able to make progress. Neither IPS nor pelvic floor dysfunction cause bleeding, though. Perhaps a subtle hemorrhoid? It can sometimes be difficult or impossible to see these on scopes.
Glad to hear none of the usual suspects were found. I agree with Scott in that IPS nor pelvic floor dysfunction should cause bleeding. I also suffer from IPS (not surprising since I was a lifelong IBS sufferer). Perhaps you can have your daughter make a note or inform you when there is blood and where found (stool, toilet paper ) and keep track to see a pattern and determine if these are transient events.
I know researching and keeping up with pouch conditions is not ideal, however unfortunately this is something I think most of us in the jpouch.org world face as an ongoing exercise.
Having suffered greatly for months after takedown , I can tell you how good I felt after the first pouchoscopy when my GI told me everything looked good.
The IPS could cause the belly pain, but I agree - blood in stool is not a symptom of either IPS or Pelvic Floor - - a hemorrhoid that hides and comes arounds every so often sound like a possibility. They generally don’t bleed a ton, but enough to notice.
Thanks to all for your input. It definitely was a great relief to hear! I think the bleeding comes from her possibly straining. I think doctor would have seen if she had a hemorrhoid, but it is possible that it hides. It is definitely not huge amounts comparatively to when she was sick with UC. Curious to see if she begins to feel better in these coming weeks knowing that she checked out ok.