Skip to main content

Finally saw my new GI this week, but still have absolutely no answers. He didn't seem all that concerned about the bleeding (?!). He wants me to try suppositories and follow up again in January.

Currently I've reached the point of complete disillusionment. Walking out of the office, it kind of hit me all at once that I'm probably just going to have to live with these issues.

So that's that, I guess.
Original Post

Replies sorted oldest to newest

I am so sorry Spooky,
This is really not good news...you should not have to just accept the decision that they have not found anything and you have to live with it...is there no one else that you can see who might have a different diagnositic test or abilitly to look at things differently? Sometimes it is not the test but the doctor....please do not give up the fight for good health and freedom for discomfort and pain...noone should have to live this way.
Sharon
Spooky
I go through this too with my GI. He often is befuddled by my symptoms. He is never concerned about intermittent bleeding and has told me I will always have some level of inflammation. I try not to let it bother me when it happens. My surgeon always tells me everything is based on how I feel even when they have found ulcers in my pouch. At this time I often self medicate when having issues and keep in touch with my Gi through emails or monthly visits. I wish I had more advice to offer.
Well, at least I still have the follow up with the allergist/immunologist in a few weeks. This GI was pretty dismissive of the facial swelling symptoms I've been having, basically saying that he's never heard of it happening with UC. As for the bleeding, he said that oftentimes the cause is never found. He mentioned things like irritated staple lines, fissures, micro-tears, tiny ulcers, and hemorrhoids as being possible causes, and he said these things don't always show up on scopes or scans. I also have had 2 scopes and an MRI this year that didn't really show anything. So he's reluctant to do any more testing right now.
To me, it's a lot of blood. The whole stool is bloody; the colour varies from red to maroon. It looks like UC. That's the best way I can describe it. However, I can go 2,3 weeks without seeing any blood, then have it show up 3 or 4 days in a row. It's not in every BM and it tends to happen more toward the end of the day. It doesn't seem to be related to any specific food or activity.
I don't like the sound of it either, and totally can relate to your frustration. Did you ask the new GI to order a blood test, and/or did he on his own? Blood loss can lead to anemia and iron deficiencies.

What you describe sounds a lot like what I saw when I had UC. It always used to bother me when I saw blood. But with pouchitis in 18 years I never have seen blood even though I have had some big ulcers. With pouchitis I have also never had the pain that I had with UC.
Yes. I'm having bloodwork done every 6-8 weeks and a follow up next in January.

But yes, I think I've confounded everyone. I've seen 2 GIs (and a Fellow who was filling in at the clinic when my former GI left), as well as my surgeon since I started having these symptoms, and I've had no explanation. I've also been told by all of them to try to ignore the intermittent bleeding. I am slightly anemic (it's been varying between 10-12 since this started; before that my hemoglobin was around 14) but again that doesn't seem low enough to raise alarm bells for anyone.

Like I said, after months of bouncing around to different doctors, I think I'm going to have to live with this for now. I do have the prescription for suppositories. I haven't tried those yet.
This intermittent stuff sure sounds like an ulcer or similar somewhere well beyond your pouch and that is why they don't see it on scopes. Imaging can easily miss that stuff. There were many suspected Crohn's patients that "passed" all imaging studies and did not get definitively diagnosed until camera pill endoscopy confirmed it. This imaging also proved many instances of small bowel damage from NSAID use that had been underestimated.

If bleeding is brisk and transit time quick, upper GI bleeding can still be red upon exit, instead of the expected dark or tarry appearance if transit time is normal.

The good news is that it does not seem to be enough to be causing any significant anemia, at least not yet. However, with brisk bleeding, even if limited and intermittent, my concern would be real hemorrhage at some point. This is completely unpredictable, so I understand your worry.

Jan Smiler
It sounds like Spooky should press her new GI to do a camera pill endoscopy if the suppositories do not work. I was kind of questioning doing the MRI Enterography for this kind of an issue. The MRI is looking for swelling of the bowel wall and that may not be happening if there is an ulcer.

Spooky are you taking any NSAIDs? Because like Jan said that will cause this issue. My friend's mother in law had a hemorrhage from taking too many NSAIDs.
No, I don't take NSAIDS anymore. I used to take Advil occasionally for menstrual cramps but I haven't now in quite a while (even then, it was probably 4 a month, max). Basically I only take Tylenol for a headache or otherwise, and that's not very often. I'm actually pretty anti-medication.

The camera pill was mentioned by my former GI. Turns out it wasn't covered by OHIP (provincial insurance plan) so it got put on hold until he figured a way around the red tape. It didn't come up this time, but I'm not sure I'm a good candidate anyway as I have a history of adhesions and the more I've read about the pill, the less I feel confident about doing it.
quote:
I have a history of adhesions and the more I've read about the pill, the less I feel confident about doing it


I can't blame you. It was also mentioned to me, and because I am strictured where my ileum hits the J Pouch, I rejected the camera pill as well. I also had the chance to look at the pill that was being used as of 2008. My father's good friend was an investor in the company that makes them and he brought a sample for me to look at. It dwarfed the biggest horse pill I have ever seen. Just like I never thought they would be able to get the NG tube down through my tiny nostril, never thought I would be able to swallow that pill, and that I would likely die from choking on it. I certainly would not even try to swallow it, unless Jan Dollar was around and in the room to perform a Heimlich Maneuver on me as soon as I started choking Smiler Although my father performs a pretty good Heimlich maneuver according to my mother, whom he saved from choking on a piece of General Tso's chicken.
Last edited by CTBarrister
Sure, I understand the pitfalls to the camera pill endoscopy, and know that it does not solve everything. I was just pointing out that just because nothing in the upper GI has shown up before, it does not mean there is nothing there. Obviously, bleeding is not normal, even if it is not of urgent concern.

You may not be able to find out what is going on until something happens to bring the urgency level up. Not the greatest way to deal with it, but sometimes you just have to wait for things to progress, or not! Maybe you will be lucky and things will just resolve on their own and you never know what it was.

Jan Smiler
quote:
You may not be able to find out what is going on until something happens to bring the urgency level up. Not the greatest way to deal with it, but sometimes you just have to wait for things to progress, or not! Maybe you will be lucky and things will just resolve on their own and you never know what it was.


Jan, this is my feeling as well. Although I don't like living my life with the potential for an emergency situation at the back of my mind, I think it might take a worsening of symptoms to get this progressed. Which sucks, but it's a potential reality. But it's one of the reasons why I haven't taken a vacation this year, and why I'm not planning one at the moment. I don't really want to stray too far from home, should something happen.

As for the upper GI issues, this is possible as well. Perhaps at some point an upper endoscopy should be done. I've never had one.
quote:
But it's one of the reasons why I haven't taken a vacation this year, and why I'm not planning one at the moment


It really sucks that you have to live like this, especially being a young person. Perhaps you can consider a vacation to somewhere that is not too risky for emergency medical care? Like Florida? But, you also have to ask yourself, what could happen at very worst? A hemorrhage? That will be a hard situation to deal with whether you are in Toronto or Florida, but I agree you probably wouldn't want to be in Negril, Jamaica and have something like that happen.

I am planning a trip to Aruba in January with a friend. My friend has UC, and I suspect if there is a medical emergency, it will more likely be him than me. He is on 6MP, but he is up and down with his UC and endures bouts of incontinence, plus he has diabetes that does not seem to be well controlled. I got together with him over the weekend and he kept shaking his hand violently to get blood flowing in it. It did not look good to me. So I will take a look at where the hospital is there in case we have an emergency. He is a guy who is far less of a worrier than I am. I can guarantee that between the two of us, only I will think to research and investigate Aruban medical facilities. It is not in his nature to worry about anything.

Spooky- Things can't stay this way forever. Maybe it will go away and you can just move on. You have to be able to live, especially at the age you are at. You are in your prime years as an adult right now. This is not to say you can't enjoy your life in your 60s or 70s but mid 30s is a time when I was travelling all over the Caribbean. You only have so much time and so many vacations. I regret not taking more vacations during those years. I had the ability to do so from the health standpoint, I just didn't. Big regrets.
Oh! I just assumed they had done the upper endoscopy, since they had been discussing the camera pill endoscopy. Absolutely, that is a first step.

Depending on how much this impacting your life, you can either just live as if it was not there, or adjust your life to it. It just all depends on how frequent and/or serious it is.

Even with my constant flare with bleeding the six months before my surgery, I did not stop living. I took a trip across country, small overnights and weekends, etc. But, no venturing out of the country or new adventures where I did not know what to expect. But, if you are going to worry the entire time, that is no fun either.

Jan Smiler
No upper endoscopy yet. In fact that hasn't come up with the GI to this point. I guess they don't feel like my symptoms suggest an upper GI issue? It's something I'll need to ask about.

I'm still trying to do as much as I can. I still horseback ride every week. Smiler I just don't feel like I should stray too far. I guess it would be different if I knew what I was dealing with. It's the element of the unknown that's causing the worry in this case.
Well, ordinarily bright red or maroon rectal bleeding indicates a lower GI bleed. However, transit time factors in on this. You can have a bleeding stomach ulcer and get bright red rectal bleeding, particularly if there is a rapid bleed that dumps a lot of blood in the gut at once. It can stimulate peristalsis. Plus, factor in the fact that you do not have a colon, it changes that dynamic. The main thing is that they ruled out the pouch and nearby it.

Just something to consider...

Jan Smiler
Actually, they still think it might be the pouch, so it still hasn't been ruled out as the source. I mentioned some potential causes of bleeding the GI outlined to me in one of the earlier posts. These included irritated staple line, microtears, tiny ulcers, and hemorrhoids. He said that often those type of issues won't show up on scopes or imaging because they are transient, which is perhaps why they don't want to subject me to any additional testing right now.

Of course, that doesn't rule out any upper source either. It's just some possible explanations.
Just a little update from my corner.

Not surprisingly, I didn't tolerate the suppositories. I'm beginning to think that I have an allergy or else a poor tolerance for mesalamine meds. Called the GI back, he told me to stop taking them, and prescribed a month's worth of cipro and flagyl instead - which I filled, but I have yet to take a single antibiotic at this point. Cipro in particular makes me feel really crappy and I'd prefer not to go that route if we can help it. I'll keep them on hand in case things get really rocky (or for when the zombie apocalypse hits. At least then I'll be well stocked. Smiler). Instead, I've started taking Align (expensive, but the generic types are not available in Canada - Amazon won't ship here). I'm also taking Tumeric Force, and I've upped my fish oil. I'm hoping the latter will help my dry eye situation as well. I've always been careful what I eat in terms of staying away from artificial sweeteners, preservatives, dyes, junk foods, etc, but I've decided to completely cut out foods such as pasta and I'm now very carefully watching my sugar intake (there is a A LOT of hidden sugar in many foods most people wouldn't expect. I knew this but never really paid attention). I've been eating a lot of Greek yogurt again. I'm also using tzatziki or making my own salad dressing instead of using the pre-packaged crap. I'm also adding more rice, oatmeal, quinoa, etc. Is it helping? It's probably too soon to tell, but I've had a few better days.

Anyway, that is where we are now. Otherwise things are status quo. I hate to say I might have hit a new normal, but that's where we are...
Well, hmmmm! I guess you were not surprised about the mesalamine suppositories. Glad you are willing to take the antibiotics if worse comes to worse, but I understand your reluctance. As to the brand name Align, it is just that strain that has been studied extensively, and with probiotics, it IS strain specific. That does not mean that the generic strains are crap, just more of an unknown. I have actually switched back to Align after experimenting with other no-name multi-probiotic supplements. It is what my husband takes, and it just was easier to order one type. I do get it discounted by ordering through the Amazon subscribe-and-save program.

Has the bleeding subsided at least?

New normal, is that like orange is the new black?

Jan Smiler
I've still had some bleeding, unfortunately, though I've also had some soreness and as per my GI I do have hemorrhoids. Perhaps that is part of it; all of that could be contributing. The gas and gurgling are better overall, though I've still had a few days where both have been pretty annoying.

I want to say I'm not "anti" antibiotic - I'm just opposed to taking them when there is no clear-cut reason for it. i.e., I likely had pouchitis in July (confirmed on biopsy even though the pouch didn't look too bad visually), but as per my most recent visit I apparently don't have it now. I've already had 3 rounds of either cipro and/or flagyl since last December, and in each case there was no significant change in the bleeding (as is always the case, it disappears for a few weeks and then shows up again. I don't think the antibiotics altered the pattern). I was thinking of trying them for just a short stint to see if the other issues settled down, but as long as things remain stable, I'll save them to use if and when I get a worsening of symptoms, or feel as if I do have pouchitis.

So far I'm happy with the Align. I think it has helped. I was previously taking the Jamieson multi-strain but this seems to work better. I'm not happy about the fact that it's about $1 a pill, but for now I have to stick with what at least seems to be working.

I guess it is like orange is the new black. Smiler
Have you tried Anucort, Hydrocortisone Acetate 25MG, suppositories? They work great for some with bleeding and are far less expensive than Canasa, mesalamine suppositories. I guess you don't need to worry about the costs in Canada. Unfortunately they didn't work for my cuffitis but work well for many with it and with pouchitis. I agree with you not wanting to use antibiotics but I finally broke down and use them.

I was diagnosed with chronic cuffitis and IPS not pouchitis. I don't know what you have but it seems as antibiotics would not be something to use for IPS. There is a study that confirms the use of it in treating IPS. My GI specialist at the Mayo clinic has me using Canasa for my chronic cuffitis and Anucort as well when it's really bad. (I tried Anucort in the past for months and it did nothing by it's self.) I use Loperamide, antidepressants and anxiety medications for my Irritable Pouch Syndrome plus when frequency becomes too often and watery I take a round of Augmentin. I don't want to take antibiotics but it works. There is no indication in my pouch biopsies that indicate I need antibiotics but they work. It could be there is small bowel bacteria problems, but again biopsies taken above my j-pouch, while doing pouchscopes, show no indications. I take VSL#3 and s.boulardii probiotics when not on Augmentin. I can't take Cipro because it caused c.diff back when I had a colon and I've had c.diff several times since take down. Flagyl doesn't set too well with me - so I take Augmentin.

What I'm trying to say is I'm suggesting you try the antibiotic to see if a round of it helps, then take your probiotics. Also, if you have not tried it, see about using Anucort suppositories.

It's worked out that I end up taking the antibiotic every 6 weeks or so and I'm trying to stretch that out as far as I can.

Good Luck Smiler
Thanks TE Marie!

As I mentioned earlier, I was considering doing a short course of the antibiotic just see, but things see somewhat stable for now so I'll wait for the time being. Obviously if things get worse, I'll start them. I'll definitely ask my GI about the Anucort. That's never been suggested to me, but I'm not sure if it's available in Canada, though there may be another version (i.e Canasa is Salofalk here; Rowasa is Pentasa). Drugs here actually are not free; we have a co-pay system and some drugs are not covered and/or are more expensive than others. Only in a perfect world! Smiler

I think antibiotics tend to help many people, at least in the short term, because they destroy everything in the gut and generally slow things down, even without pouchitis. That could be why they help you - anything bad gets zapped. Some of us react to even mild inflammation levels, so what is not clinically pouchitis on bacterial overgrowth still affects us negatively. It sounds like you and I probably fall in that category.

Thank you for the suggestions! I am definitely going to discuss a lot of this with my GI... I'm going in for my next follow up with an agenda!
Upper GI never makes me bleed, personally. And I have tons of it, just had more cancerous polyps pop up to get rid of. I was anemic but not sure if that is from the polyps. The only time I have had red blood come out is when I had C.diff, my whole toilet bowl was beaming bright red and looked like clots were coming out in chunks.
Vanessa,

I've had 2 c.diff cultures in the past 10 months which have come back negative. Granted, I don't know what testing was used, but it was at 2 different labs, and the second time around, the nurse did discuss the results with me and said they were confident it wasn't c.diff. My GI also felt the symptoms were too intermittent to be c.diff. However, what you describe is similar to what I have see in the toilet on several occasions - bright or darker red blood mixed with the stool, and on a few occasions what looked like smaller clots on the TP.
If you hadn't been taking antibiotics with in 2 weeks of your c.diff tests you probably didn't have false negatives. I doubt it would go away by it's self, nasty horrible bug it is. C.diff was a good thing to consider. I had cuffitis and c.diff at the same time and had bowls full of blood like that. Once the c.diff was taken care of I have never had bleeding like that from cuffitis alone. I have been on medication for cuffitis since then so have not let it get bad enough to bleed much.
I know that pouchitis isn't typically associated with bleeding, by both my GI and surgeon indicated that it can and does happen. That's not to say that my bleeding was related to pouchitis (I still don't think that it is/was, since my bleeding has occurred in absence of any other pouchitis symptoms, and as far as I know, I've only officially had pouchitis twice). However, there is an interesting, short overview on pouchitis for patients here that does suggest that rectal bleeding can be a symptom:

http://www.mtsinai.on.ca/ibd/p...urgery/pouchitis.htm

I think I'm having better luck with Align than any other probiotic I've tried. Sticking with it. I'll check into Drugstore.com. .75 is even cheaper than Costco, which works out to about .87 a capsule.
I don't know if the heavy bleeding was cuffitis, c.diff or caused by both the first diagnosis of cuffitis. It's been so crazy and exasperating Spooky....you know what I mean. That was when the surgeon did that horrible straight scope, said I had a little bleeding, threw me a 2 week script for Anucort and said he'd see me in a year! It all took 10 minutes. I didn't know what happened so came home and made an appointment with my GI. I wasn't diagnosed for a couple of months later with the c.diff until my GI did the proper flex sig scope with biopsies and took a stool sample. I was on medication from the time I saw my surgeon for 2 months by then.

Have you had your eyes tested for dry eye? I am diagnosed with it and using the prescription Restasis. My Ophthalmologist prescribed Restasis for my dry eyes said to use "Refresh tears" (Lubricant Eye Drops, Moisture drops) during the day. She said to never use any Visine products. My optometrist diagnosed me incorrectly with allergies for years. Just one more little inflammatory thing.
TE, I know how you feel. Initially, my GI had also said to try suppositories and come back in a year! It was only because I was quite persistent, and because the resident was so sympathetic to these ongoing issues that I've been having (for almost a year now), that he changed his mind and asked me to come back in 3 months, which is January.

Oh my last scope the cuff was said to be mildly inflamed but they stopped short at calling it cuffitis. 2 c.diff cultures have been negative. Like you, I feel like I've exhausted everything.

Yes, I have been recently diagnosed with moderate dry eye, though I think I've probably had this problem for a while, it was just missed. In fact, I'm supposed to go back to the optometrist this week for follow up. I'm not sure he'll refer me to an ophthalmologist or not; we shall see. I've had other issues with my eyes in the past related to my UC (retinal inflammation), so he may decide to do so, just to cover all the bases.

I'm using Systane now for my eyes. I was also given Lubisic gel but that blurred my vision. Sometimes I wonder if the drops do anything. It seems the more I use them, the more I need. *shrug* Steroid eyedrops were mentioned, but I'd rather not go that route at this time.
When I am in a severe flare, nothing but the steroid drops will do. After years of trying every product out there, I have found something that works (sort of).

I use Restasis twice a day.

If you have allergy eyes, it is safe to use ketotifen (Zaditor) drops on a regular basis. They are not as strong as Visine or naphzoline drops, but they are better than nothing. The others are OK for the rare use, but they do dry the eyes, so best to avoid them.

For daytime, I've found that Systane Balance drops seem to last the longest. Also, it is very important to cleanse the eyelids a couple of times a day, especially if you have allergies because pollens can cling there. Using warm, moist compresses during the day helps keep the natural emollients flowing in the eyelids. I finally settled on using Ocusoft lid scrub daily in the shower. Seems to be better than plain water for getting my lids clean and does not irritate.

At night I have been using the gel. You aren't supposed to use it during the day because of blurred vision. For whatever reason, the gel seems to last longer than the night ointment, but I still have to reapply during the night (tear production is lowest when you sleep, since blinking stimulates it).

Sheesh, I could write a book on this...knowledge I'd rather not have!

Jan Smiler
I was using Naphcon A eye Drops for allergy relief and other OTC other times of the year. I think an optometrist should be able to test for dry eye, but don't know for sure. In one of the tests she put little blue construction paper looking strips of blue paper under my bottom eye lids to measure how dry my eyes were. She did some other tests too. If the restasis burned she said to let her know and she would prescribe steroid eye drops as well but it doesn't sting much if at all, and I use it twice daily too. The one you use daily is the other one she suggested too Jan. You can also get some kind of ear duct plugs, didn't sound appealing to me...

Thanks Jan, I will be asking my doctor about the cleaning process you are using as my eyes are still dry.

Spooky, did they ever biopsy your cuff? If it looked red or whatever the should have to see if it was cuffitis. Sorry, you might have said this, if it is cuffitis and mesalamine doesn't work and hydrocortisone doesn't work there are enema's and foams.

I'm having a flair with my cuffitis currently and it makes my pouch hurt because I am going so much, even though I'm using Loperamide, an antispasmodic, canasa and anucort when possible. My frequency is currently impossible to get under control and I know that's what's making my pouch spasm. I don't have pouchitis but have IPS so some of that's probably thrown in there as well. So I really feel for you as I'm here with you. I feel better prepared as I'm pretty sure I know what's going on and have a treatment plan to follow. It's frustrating.

Here's hoping you get some answers in January, if not before Smiler
Jan, yes, I'm using the gel at night instead. My eyes water a lot in cold and windy conditions, but not otherwise. My job also involves me being on the computer all day so I know that doesn't help.

I definitely agree with you - sometimes it is sad that we know as much as we do about some things. I'm sure I wouldn't like to know even half as much as I do about ostomies and pouches and the like. But what can we do. Smiler

TE Marie, my optometrist did some type of dye test when I was last there to measure dryness. Supposedly my eyes scored a "5" (which I believe is on a scale of 1-10) so it's moderate dry eye.

I'm not 100% sure if the cuff was biopsied. I assumed it would have been, but I only heard back about the pouchitis, not cuffitis. That being said, my most recent scope was with my former GI just days before he left the country. I will ask at my next appointment. I would hope that the results weren't lost in transition and that they were communicated to the new GI.

At any rate, since I did not tolerate either Salofalk or Pentasa enemas, I think I may be allergic to mesalamine; or it it's not a true allergy, then it just really irritates my pouch. I have had both entocort and cortifoam in the past. We could try that route again if the GI feels it's necessary. I don't really understand the role of cipro, or any other antibiotic for that matter, for cuffitis (other than the fact that it might slow frequency and thereby give the cuff some relief) but it seems to work for some folks. I'd rather not use cipro if I can help it, though. It completely knocks me out and I just generally feel really lousy on it.

It would be nice to have answers. This has been almost a year in the making. But at this point, I think I'd just accept having my symptoms managed for the long haul. Now it seems I have a few good weeks followed by a few bad ones; lather, rinse, repeat. I'm getting a little weary of the journey.

Thanks for listening, everybody. Smiler

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×