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Crohn's Disease Forum » Extra Intestinal Manifestations » Mouth » Mouth ulcers reappeared after surgery and getting worse! :(


02-12-2016, 04:38 AM   #1
marmalade22
 
Join Date: Feb 2015
Mouth ulcers reappeared after surgery and getting worse! :(

I've posted quite a lot over the past few weeks as I am having a really horrible time post surgery and I now have another issue I would like your opinions on please.

Mouth ulcers have always been the hallmark of when my disease is acting up. Before I had surgery 3 weeks ago I had about 30 large ones covering the roof of my mouth and down my throat and they didn't clear until I was on high dose IV steroids ( oral steroids don't work for me).

3 weeks ago after all the meds failed I had my complete colon removed and I currently do not have any disease anywhere else apart from a small amount in my rectal stump which they confirmed on Monday when I had abscesses surgery. I am also currently no longer on any ibd meds apart from 10mg prednisolone which I am tapering.

About 5 days after surgery I started to get tiny mouth ulcers on my lips and oral thrush . This was on the day I was being discharged and I was told it was because I was severely malnourished and my immune system is practically none existant. My surgeon gave me a 7 day course of nystatin ( which did nothing) and a vitamin b complex strong tablets which I am currently still taking and have about a week left.

Despite taking the supplements, nutritional drinks and eating when I can the ulcers have gotten worse to the point where I now have about 20 around my lips and tip of my tongue, one on the tip on the gum where a wisdom tooth is growing?! And several others around my teeth and the back of my tongue. It also looks like I may have some forming on my uvula however they are very similar if not the same ulcers I had before surgery, so I don't know if they are old ulcers reappearing?

They are a lot smaller than they were before surgery, some are the size of a pinprick however because of their positions it has become extremely painful to eat and drink. It should also be noted that alongside recovering from ileostomy surgery and recent surgery to drain a perianal abscesses, I am also suffering with complications such as shingles and a chest infection so I have been on antibiotics for over 2 weeks.I also have indeterminate colitis. Every biopsy I have had has come back inconclusive however in a few weeks I should get the results from the large sample that was my colon to figure out if i have crohns or UC. They are currently favouring UC.

I don't really know what to do at this point. Despite taking the supplements, resting, eating and drinking plenty of fluids the ulcers are getting worse which is making me think it is not malnourishment. Could the small amount of disease in my rectum be causing this? Or are the mouth ulcers a sign of crohns and I will just have to suffer with them for the rest of my life despite having little/no active disease elsewhere. I have gotten to the point where even drinking water is painful!

Also my other symptoms before were bright red heavy blood loss and mucus, extreme weight loss, abdominal cramping, nausea, urgency and frequent trips to the bathroom and diarrhoea. I no longer have any of these symptoms since having my ileostomy.

Please help I am miserable!
02-12-2016, 04:46 PM   #2
chata
 
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Join Date: Jan 2012
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A severe outbreak of herpes viruses even looks excruciating; I can't imagine how much you're suffering.

An outbreak as severe and long-lasting as yours should have been treated with antivirals such as Acyclovir, Famciclovir, or Valacyclovir. Unfortunately, once it's as bad as yours is, they don't work well, which is why docs sometimes have people like you on them prior to surgery, or other stressful (including emotional) events. Some people have to take them daily for a long while. Have they given you a reason why they don't have you on such drugs? Is it because of your Crohn's/UC?

Antivirals should be on hand for you so that when you get that feeling (your probably know so well) that a blister is coming, you can start a course before it's begun. That can limit an attack to only a few hours or one day.

For now, keep in mind one thing: Do not touch your fingers anywhere near your eyes at any time without washing them first. Keep all contact with your eyes as minimal as possible, even after washing your hands. Don't use contact lenses no matter what until this outbreak is over!

The worst complication of herpes is with eyes. It's one of the leading causes of blindness in the U.S., and is nothing to be fooled around with. The pain can be agonizing.

Until you can get a doc to respond to you, don't eat citrus fruits, spicy foods, citrus fruits, salad dressings, etc. I imagine you know that anyway. Rinse your mouth and gargle with ice water as often as you can tolerate it. Suck on ice cubes and popsicles (rather than ice cream). Apply ice packs and/or washcloths soaked in ice water around your mouth. Some people do respond better to warmth than cold, so try a few warm water gargles, warm compresses, and even a lightly salted water gargle, or some warm broth: no hot temperatures.

Steroids won't help, nor will nystatin, although the latter was given for your yeast infection rather than the herpes. Only antivirals work. You might get some pain relief from acetaminophen (Tylenol), too, if you're allowed to take it.

I know it's Friday, but someone has to be on call. If your blisters are that obvious, I see no reason why you couldn't go to a doc-in-a-box for pain relief, then see your regular doc Monday. No one should have to live in that much pain.
__________________
Currently use Remicade every eight weeks and 4.8 gms. Lialda daily. In remission.

All doctors are informed that I'll never use prednisone again unless I'm admitted unconscious via the E.R. If that happens, when I awaken I'll stab the doc who ordered it right through the heart.
02-12-2016, 05:40 PM   #3
marmalade22
 
Join Date: Feb 2015
A severe outbreak of herpes viruses even looks excruciating; I can't imagine how much you're suffering.

An outbreak as severe and long-lasting as yours should have been treated with antivirals such as Acyclovir, Famciclovir, or Valacyclovir. Unfortunately, once it's as bad as yours is, they don't work well, which is why docs sometimes have people like you on them prior to surgery, or other stressful (including emotional) events. Some people have to take them daily for a long while. Have they given you a reason why they don't have you on such drugs? Is it because of your Crohn's/UC?

Antivirals should be on hand for you so that when you get that feeling (your probably know so well) that a blister is coming, you can start a course before it's begun. That can limit an attack to only a few hours or one day.

For now, keep in mind one thing: Do not touch your fingers anywhere near your eyes at any time without washing them first. Keep all contact with your eyes as minimal as possible, even after washing your hands. Don't use contact lenses no matter what until this outbreak is over!

The worst complication of herpes is with eyes. It's one of the leading causes of blindness in the U.S., and is nothing to be fooled around with. The pain can be agonizing.

Until you can get a doc to respond to you, don't eat citrus fruits, spicy foods, citrus fruits, salad dressings, etc. I imagine you know that anyway. Rinse your mouth and gargle with ice water as often as you can tolerate it. Suck on ice cubes and popsicles (rather than ice cream). Apply ice packs and/or washcloths soaked in ice water around your mouth. Some people do respond better to warmth than cold, so try a few warm water gargles, warm compresses, and even a lightly salted water gargle, or some warm broth: no hot temperatures.

Steroids won't help, nor will nystatin, although the latter was given for your yeast infection rather than the herpes. Only antivirals work. You might get some pain relief from acetaminophen (Tylenol), too, if you're allowed to take it.

I know it's Friday, but someone has to be on call. If your blisters are that obvious, I see no reason why you couldn't go to a doc-in-a-box for pain relief, then see your regular doc Monday. No one should have to live in that much pain.

The only thing that has ever helped my mouth ulcers when they are really bad is IV steroids. I have also been on several antibiotics (including some of the ones you have mentioned) for the past few weeks to treat my shingles, chest infection and a bladder infection I had after surgery. And these did absolutely nothing to my mouth ulcers as they continued to manifest, so it isn't bacteria or viral related .

They have now started to appear on the back of my throat and tonsils so it is continuing to get worse as my prednisolone ( which has never worked for me) tapers down. I am also currently not on any medicine for my IBD as 1) the surgery I had 3 weeks ago removed any active disease ( unless some has now spread elsewhere) and 2) my immune system is already so compromised and I already have several infections that my doctor does not want to put me on any immunosuppressents as it could hinder my recovery or even make me sicker.
02-12-2016, 06:21 PM   #4
Eridon2002
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I notice I get mouth ulcers when I eat something with natamycin in it(like shredded cheeses). Nystatin is in the same class as natamycin(polyene macrolides). Maybe you have a similar sensitivity?
02-13-2016, 04:10 AM   #5
chata
 
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Join Date: Jan 2012
Location: California
marmalade22, I'm sorry the oral corticosteroid isn't working. The drugs I mentioned aren't antibiotics, and don't help bacteria. They're antiviral drugs. Your whole situation has me stumped since I've never worked with an agent which caused blistering like yours which wasn't related to the herpes virus. I do hope you find some relief, because it sounds horrible.
02-13-2016, 04:32 AM   #6
marmalade22
 
Join Date: Feb 2015
Ive been on antivirals, acyclovir to be specific for my shingles and my mouth ulcers have continued to get worse which is making me believe it isn't viral related.
02-13-2016, 04:34 AM   #7
marmalade22
 
Join Date: Feb 2015
I notice I get mouth ulcers when I eat something with natamycin in it(like shredded cheeses). Nystatin is in the same class as natamycin(polyene macrolides). Maybe you have a similar sensitivity?
I was only on nystatin for 7 days and that stopped over a week ago and they have continued to multiply. They appear to have gotten worse over the past day with several slightly larger ones appearing on my tonsil and back of throat
04-23-2017, 05:00 AM   #8
Dapper_Dan
 
Join Date: Apr 2017
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I have suffered fairly similar issues for the last 7 months, generally;

several mouth ulcers, recurring in the same places with one constant in my throat (right tonsil). These have gotten so bad at times that I have been unable to speak/ eat. A recent biopsy proved that this was more likely to be a inflammatory issue than a viral one. I also had 2 very large ulcers appear on my testicles, which where biopsied with no conclusion.

This all started up after surgery to reverse my stoma.

In the beginning I was prescribed oral antibiotics, then IV antibiotics when I was admitted. They also tried Humira, but after initially looking like the symptoms were improving, things got much worse with the second dose and I was readmitted. They tried anti-virals briefly, but eventually got me on IV Hydrocortisone, which is the only time I think I've felt ulcer free for the whole event. Once I stepped down to 40mg predisolone I began to suffer again, albeit not as badly. Once I started to decrease the pred the symptoms got worse, so they restarted Humira whilst they're waiting for funding for Stelara. Results have continued to be sporadic and I still have ulcers appear and disappear in several common locations.

To keep things at bay I've been prescribed; Bonjela (useless), Difflam (pretty good), Disolvable Hydrocortisone (Ok - but you dissolve it on the ulcers and it's very difficult to get it near the tonsils/ throat) and Lidocaine mouthwash (pretty good). I was also prescribed this really thick cream like Bonjela, but it's quite unpleasant.

It's extremely depressing as I'm trying to get back to work/ normality, but I seem to shift between a baseline of sore throat and lethargic pains in my joints to worsening pain in my mouth, stomach pains and joint pain. This situation means I can't plan any trips or really get into work stuff. Also, I thought I would be long free of the stoma by now, which is depressing.

Fortunately the testicular ulcers never reappeared and I can function day-to-day. I'm keen to get off the steriods completely as I'm now a bit overweight with a big face. My only solace is the fact that if things get bad I know I can be re-admitted for a few days to get some IV Hydrocortisone.

I really want to get to a point of being symptom free so I can get the final leg of the reversal surgery completed and get on with my life.
05-19-2017, 04:12 PM   #9
Tealtulip16
 
Join Date: Jan 2016
Location: somerset, United Kingdom
Hi my ulcers are nowhere near as bad as any of yours but it is comforting to hear people having similar symptoms. The ulcers and sore mouth is really getting me down. I have been prescribed some oral hydrocortisone today I hope it helps the excruciating crater in my mouth. I've been unable to eat or barely speak this past week. I have had a sore mouth since Christmas on and off it's been relentless. Having my azathiprine dose changed to a lower amount now and I'm hoping that helps. My electrolytes are high whatever that means???

X
06-11-2017, 01:16 PM   #10
Dapper_Dan
 
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They (the gastro team) tried me on a cinnamon and benzoate free diet, which seemed to help a bit. Once I mentioned an ulcer on my stoma they became less hopefully that it would solve anything.

Finally my dietitian brought me off the diet as my symptoms were not consistent with Orofacial granulomatosis.

Anyway, it's a pain to stick to because neither ingredient need to be listed on packaging and benzoate occurs naturally in some foodstuff, but I would give it a go if all else has failed.
06-11-2017, 10:52 PM   #11
Jabee
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It sounds to me like the ulcers are a sign of your bowel disease being active, which suggests you have crohn's not UC. During my last flare up I had an enormous ulcer on the roof of my mouth; crohn's can produce inflammation anywhere in the digestive tract. I hope your GI can prescribe something that helps; I used pain killers which helped. But the ulcer didn't go away until I was hospitalized and put on IV steroids.
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