Calmo
Visbiome

Skip to main content

B
Well...I've been away from this forum for quite some time. I see my old friends Bill, Jan, and Dave are still here (not old as in aged, but in we go way back.) Smiler I have led a very healthy, happy life since my 3 step surgery back in 1997. I even have a success story published here. I just experienced a very serious setback and felt it was time to consult the web site that provided such guidance and comfort to me so many years ago.

Tuesday, 1/14, I suffered a severe gastric bleed and hemorrhaged, resulting in life threatening drop in my hemoglobin and blood pressure. I spent two days hospitalized and received four units of blood. I had both an endoscopic procedure as well as a sigmoidoscopy which revealed severe ulcerations in my j-pouch. Needless to say, I was floored. While happy to have a diagnosis, I await biopsy results. I have been told this is likely a severe bacterial infection (h-pylori or C-diff) and received multiple bags of flagyl in the hospital. I came home with another weeks' worth of this antibiotic, as well as iron supplements.

As I await test results, I wanted to inquire as to whether anyone else has experienced ulcerations in their pouch. As I spewed what seemed like gallons of blood (sorry to be graphic, but that is what it felt like at the time) I feared the loss of my j-pouch, imagining various horrible scenarios, including Crohns. I'm trusting that the meds and a very careful diet will heal the ulcerations in my pouch. I will, of course, be following up with my GI doc in another week, expecting they will do another scope in time, to make sure everything is healing.

If you have any insights or experiences to share, I would love to hear them. And to Bill, Jan, and Dave - hats off for remaining devoted to this mission/site.

Thanks!

Replies sorted oldest to newest

Jan DollarJan DollarModerator, RN, retired
Hi Beth, good to "see" you, but sorry it is because you have been sick. I would be suspicious of Crohn's too if I had simultaneous ulcers in both the stomach and j-pouch, but I don't think that stomach ulcers are uncommon with UC and we are just as susceptible to H. pylori as the next guy. Maybe more so, since we have a head start with an already damaged gut. So, I would go with that and try not to imagine it being something worse. I presume they tested for both H. pylori and C. diff, so you should know soon. In the meantime, Flagyl is the safest antibiotic to take right now. Hope this gets resolved quickly!

I am sorry to report that in your absence, Dave H is no longer with us. He died a number of years ago of ALS. He continued on this site until he could no longer do keyboarding. Yes, his name does still appear as a moderator, so I guess he is still watching over us! We miss him terribly.

Jan Smiler
Jan Dollar
dewdewMember
I've had my pouch for around 8 years now. I've had two severe bleeding episodes that put me in the hospital also with dangerously low Hemoglobin. Both issues resolved themselves in about three days. The one pouchoscopy that I did had a few years after my jpouch creation resulted in some slight ulceration, nothing the doctor cared about. Never did find out the reason for the bleeding episodes.
dew
B BethG1983Member
Thanks, Jan. I'm terribly sorry to hear about Dave. What a truly horrific disease that took him. Thank you for letting me know.

Yes - I am hoping to get my biopsy results back today. I am hopeful that since there were no other ulcers found in my GI tract that this is an isolated bacterial infection. I found it bizarre that I had absolutely NO signs of a problem (discomfort, slight bleeding, etc) until the floodgates opened up Tuesday. It is just truly strange, but such is life sometimes. I will let you know what I hear back from the doctor. As of now, the bleeding appears to have complete subsided after the doctor clamped a suspicious area in my pouch. They gave me a big dose of protonics too. I am now praying that this is the end of it, but know that I must proceed with caution with my diet.

I am having some lingering stomach pains, but I'm hoping that it is just from my endoscopic procedure. I also have noticed that my parotids at my jawline are very painful - so I'm monitoring that as well.

Overall, I'm just grateful to be feeling better and to have had a relatively short stint in the hospital. I'm hoping to return to work Tuesday as long as I remain complication free.

Thanks again!
B
Scott FScott FMember
Any condition that causes ulceration can sometimes do so at the wrong spot - over a small artery in particular. When that happens the bleeding can be remarkable, to say the least, but it may not mean anything more than ulcers plus bad luck. Beth, I can't tell from your post if they believe the bleeding was from both locations (stomach and J-pouch) at the same time or just one location, with non-bleeding ulcers at the other.
Scott F
B BethG1983Member
Scott - they believe the bleed came solely from the pouch. The endoscope showed no problems in the upper tract or stomach. The ulcerations throughout the pouch were pretty prolific, so yes, one just happened to be in the vicinity of an artery. At this point, once I find out the source of the ulcers, I'll be satisfied. Obviously if it is bacterial in nature, there wasn't anything I could do to prevent it. I just find it odd that I had no symptoms before the bleed of that severe of an issue with ulcers. Go figure. I guess at this point I'm just grappling with my need to understand. I would be just fine not to EVER experience that kind of blood loss again. It was truly frightening.

Thanks for your response.
B
SpookySpookyMember
Hi Beth,

Sorry to hear this happened to you. I can sort of relate. I've had a similar bleeding issue ongoing for about a year now, though perhaps not for the same reason as you. I had a well functioning pouch for about 4.5 years with very few problems other than 1 bout of pouchitis. However, over the past year I've had a number of bleeding episodes, with blood in the toilet bowel as well as mixed in with the stool. Two of these episodes were severe enough to send me to the ER. I've had more minor, intermittent bleeding in between the severe episodes, though I may also go weeks with no bleeding whatsoever. My hemoglobin has remained on the lower side since this started happening, though it been up and down. Following the last serious bleeding episode in early December, it dropped below 10, though it wasn't deemed serious enough for hospital admission. My pouch otherwise functions great - I have no ongoing problems with frequency or pain. It's been a long process getting this problem sorted out, especially since my previous GI left and I had to wait several months to see a new one. In the past year, I've been scoped 3 times. The first two scopes revealed nothing, though on the most recent one a month ago, I apparently "bled freely." My current GI feels that my issues are due to problems with the cuff at the staple line, though ulcers have not been specifically mentioned. I've been referred back to my surgeon and I see him in a couple of weeks. I will report back any findings.

I hope this is not as long and drawn out a process for you as it has been for me, and my fingers are crossed this gets resolved for you quickly! Best of luck!
Spooky
Jan DollarJan DollarModerator, RN, retired
Beth, thanks for clearing that up, that this was strictly a j-pouch hemorrhage, not the stomach. In your title, you say it was a serious gastric bleed, which to me, means stomach. Plus, H. pylori is associated with stomach ulcers, not j-pouch ulcers. I suppose you meant GI bleed, which could mean anything!

J-pouch ulcers are common with pouchitis, and yes, sometimes they bleed. Unfortunately for you, it also happens that some people have pretty serious pouchitis without symptoms until there is a calamity.

Jan Smiler
Jan Dollar
B BethG1983Member
Spooky - thanks for your reply. I go back Monday to see the GI doc who treated me and at that point I expect to hear my biopsy results. I hope you get some answers very soon. Complications suck. I know the staple site can often be a source of problems. Hopefully yours can be rectified soon. Thanks for the well wishes.

Jan - thanks for the info - I didn't know gastric bleed was specific to stomach, so you just educated me. Smiler I've only dealt with pouchitis a few time and I knew I was having issues, so it helps me to know that sometimes you can be symptom free. And it sounds like h-pylori is out as a cause. Hopefully this flagyl will kick whatever is ailing me. I also take a fair amount of excedrin migraine for headaches which may have exacerbated everything - no more of that. I have a new headache script now that should cause no problems. I'm going to cut out alcohol and caffeine for a while too - which never help anything I know.

Looking forward to my follow-up dr. visit Monday for more answers. I was still goofy from the drugs when he spoke about what he saw when he scoped, so he can tell it to me all over again. LOL

Appreciate your insights, as always. I'll repost here when I know more. I'm just thankful that this has been my first, only, (and hopefully last) calamity since '97 - I'd say that is a pretty good track record.

I will forever speak highly of the j-pouch option to those suffering.

Take care,
Beth Cool
B
Jan DollarJan DollarModerator, RN, retired
Iron can be very hard on the gut for many people.

As to the Excedrine migraine- I would bet money that it was the root of your problems, as in, the cause of the ulcers in the first place. Yes, we do associate NSAIDs with stomach ulcers, but they are associated with inflammation anywhere in the gut. I thought I was tolerating ibuprofen pretty well and took it for years. Then, stuff happened. Fatty liver disease, pouchitis, cuffitis, bleeding, etc. My pouch looked like it had Crohn's. Stopped the NSAIDs and the liver and gut inflammation calmed down. But, then my arthritis flared out of control. That is why I am now on the biologic Simponi. I still take NSAIDs, but not more than two weeks at a time now.

Give it a few months and see if things get better. Obviously, you need new tactics for migraine.

They say taking too many NSAIDs aren't good for migraine anyway, as they can cause rebound headaches when they wear off. My husband used to love Midrin, but it went out of production. Not pulled from the market due to lawsuits, but because it was supposedly replaced by more effective drugs and nobody wanted to make it anymore. So, now he takes a low dose Inderal as a preventative and oral Imitrex when needed. But he does mix it up and takes Excedrin occasionally too. He also has UC, so he needs to be mindful of his gut. They tried him on nortriptyline, but he hated the extreme dry mouth it caused.

Jan Smiler
Jan Dollar
B BethG1983Member
Well - I'm guessing if I'm negative for c-diff than that's it! I now have a prescription for fioricet (butalbitol) which seems to be doing a pretty good job. I have used imitrex for my migraines, but don't get those often. I have a lot of severe tension headaches (and a lot of lower back pain.)

As far as the iron, they told me to take it three times a day. I am cutting back to once a day to see if my belly feels better tomorrow. Scared myself to death when I went to the bathroom today and saw practically black stool - then I remembered the iron. LOL Whew.
B
B BethG1983Member
Well - biopsy reports indicated no H Pylori, rather ischemia in the stomach. I work hard to stay hydrated so not sure what is going on there. Ulcers were present to the largest degree in the j-pouch, which I knew, but the stomach and ostomy anastomosis site showed ulcerations as well. Promethean blood test ordered (IBD Diagnostic) to look for Crohn's markers. So now we wait... A specialized CT scan may be next to study the vascular aspects of my gut. That's about all I know after today.
B
Jan DollarJan DollarModerator, RN, retired
Hydration has nothing to do with ischemia, other than the fact that if you are severely dehydrated, that might affect blood flow. Prometheus IBD serologies are touted as being very reliable, but mostly by Prometheus Labs. Many doctors use them just as a tool for helping tip the scales one way or the other when the diagnosis is indeterminate, otherwise, they are considered inconclusive.

If you have active UC going on, it is not uncommon to also have inflammation in the stomach too. Inflammation around your stoma site is not particularly telling either, since that is a common site for problems. Inflammation, ulcers, etc. away from surgical sites is more indicative of Crohn's, especially if you have no exposure to NSAIDs.

Good luck with the further testing to find out what is going on. Try not to worry too much about it, as stress of worry just makes things worse. It is what it is, whether you worry about it or not. As long as you feel OK and are not actively bleeding, that is good news right there!

Jan Smiler
Jan Dollar
B BethG1983Member
I'm not choosing to worry about it and agree that I just have to wait and see the blood work results and go from there. I'm truly believing that it is not Crohns, but if so, I'll deal with it one day at a time! I'm just glad to be returning to work tomorrow and to have bounced back so quickly with my energy considering I felt half dead a little less than a week ago. Smiler

Thanks for your knowledge and advice as always!
B
R rosevioletMember
Hi Beth,
I haven't been on this board for a long while, but just happened to see your post tonight.

I was told by a nutritionist to take NSAIDS for migraine headaches, so that's what I did for several months. I also used Excedrin Migraine, which worked well for headaches.

Long story short, I ended up in emergency with a horrid bleed. There was some ulceration, but they thought the bleed came from a broken blood vessel. I do remember feeling exhausted/hearing gurgling/increased frequency for a week or two before the bleed.

My doctor determined that it was most likely the NSAID use that triggered this pouchitis attack. This happened at least six years ago and I've had no problems since that pouchitis was treated and I've stayed away from NSAIDS.

Rose
R
M MikeHMember
Beth

Coincidentally, I haven't been on this forum for a long time either. I came across your post on a Google search and thought it would be useful (both for us and anyone else with similar problems) to share experiences.

I have had a few bouts of severe bleeding similar to yours (though I hope yours was a one off). When it happens, I have bright red bloody motions pouring out of me. Unfortunately, every time I have admitted myself to hospital, it seems to take days for anyone to get around to arranging any investigations, by which time it has cleared up (probably down to Metronidazole). Like with you, the blood loss has been substantial and I have needed transfusions on some occasions.

I have had the good fortune recently (after years of nobody doing anything really) of having a gastroenterologist take some of my issues seriously (I also have major emptying issues which I won't go into here) and he has carried out some quite extensive investigations. Getting to the point though, he seems to think that the bleeding in my case is down to ulceration in the pouch. On a recent scope he noted several "large, superficial" ulcers in the distal pouch. He seems to think it is the ulcers that cause the bleeding episodes. He may well be right as I bled quite a bit for a while after the scope, which I have put down to him taking biopsies from the ulcers themselves.

I would be interested to know what answers you get in your case.

My consultant wants to try out some Crohns medication to see how well this works. I am starting with mesalazine suppositories and I am keeping my fingers crossed on how this will work out. Depending on how this turns out, I may end up trying Infliximab (I think this is normally referred to in the US as Remicade?).
M
SpookySpookyMember
As I've posted previously, I'm also currently being investigated for intermittent bleeding issues I've been having for the past 15 months or so. The cause for mine hasn't been exactly pinned down. My GI has a working theory that it is the staple line/cuff causing the problem; cuffitis has all but been ruled out, and I do not currently have pouchitis. The pouch otherwise functions quite well, in that I don't have problems with frequency or consistency. If not for the bleeding things would be damn near perfect as far as the pouch goes. I was referred back to my surgeon for further investigation, and I am being scoped again by the surgeon next week - this will be my 4th scope in the last 15 months. I kind of protested another scope with the surgeon, but he really wants to see for himself. The past month I've had significantly less bleeding, so I'm sure this scope won't show much. However, I bled a lot after my last scope in December, so I'm getting a little apprehensive about having yet another invasive procedure. My surgeon wants to video the procedure and plans to be "rummaging around" in there a little longer than usual, so I'm being sedated for this scope - I've gone without sedation for the last 3. Anyway, if this scope turns of anything of note, I certainly report back.
Spooky
B BethG1983Member
I received the results of my Prometheus blood panel and they were not consistent with Crohns, other than a positive "anti-OmpC" antibody. I am scheduled for a follow-up flex sig to examine pouch for ulcers on Feb. 19. I feel confident that the VSL#3, no Nsaids, and alcohol intake reduction will have made a difference. I am feeling much better and have had no problems in the last few weeks. My sed rate is normal, as well as my iron. So, I just have to wait on the pouch examination for confirmation that ulcers are resolving. I truly have come to believe that the daily headache meds I was taking were the culprit.

Just wanted to update. I'll let you know the sig. results later this month.
Thanks,
Beth
B
B BethG1983Member
After a follow-up scope today, I received a diagnosis of Crohns. Not in a good place right now, as I was totally unprepared to hear it. It wasn't something I had prepared myself for emotionally. I don't know why. I guess I should have. Starting 40mg. prednisone today and will taper down each week. Had more blood work, and will have to get a chest x-ray and TB skin test, then will begin drug regimen if those tests come back okay, which they should. Not sure if he will start with remicade infusions or try oral meds first. I go back in a week to decide treatment, but he says it needs to be aggressive. Feeling pretty blown away right now. Will be seeking a second opinion from my j-pouch surgeon who is excellent. Gotta get my head wrapped around all this. He says I am an asymptomatic case. After 17 years of doing well with a j-pouch, I didn't expect this. Prayers appreciated.
B
B BethG1983Member
Well - just to update - I had yet another scope today for a second opinion regarding my Crohns diagnosis in January. The ulcerations in pouch looked to be healing, except for two particularly stubborn ones at the anastamosis site. I am still tapering off prednisone and using the Rowasa enemas. This doc said that it is "indeterminate" and took biopsies, but says that this may or may not be Crohns. Doc says that I will just have to be monitored the next six months, and that starting on 6MP or Remicade would not be a bad idea. So, I go back to my primary gastro in a week to discuss beginning a new therapy. Just wondering what the thoughts are regarding oral meds (6MP) versus the infusion route? I have to say that I'm not excited about the idea of immune-suppressants and the possible side effects. Part of me just wants to "wait and see" how I do for a few months, but the thought of worsening symptoms is concerning. I am down to 100 lbs today - haven't weighed this since I had active UC 17 years ago. One year ago I weighed 120. But I feel just fine - no pain, no bowel problems - just the hemorrhage back in January, out of nowhere... I just feel so confused about what to do next. Thanks for insights.
B
Scott FScott FMember
Ulcers occasionally pick an inconvenient spot to form, and erode a big enough blood vessel to cause a significant bleed. I'm guessing that's what may have happened to you. If that's the case, the bleed doesn't mean anything beyond the fact that you have ulceration. So regardless of the diagnosis, if you find a way to get the ulcers under good control then you shouldn't have a recurrence. Good luck!
Scott F

Add Reply

Views: 1,390
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×