Fecal Calprotectin and different types of Crohns???

[Ihurt]

Hey guys,

I am sorry if I am starting to sound like a broken record, I am just trying to figure stuff out. I don't want to go into my whole history again, but to put it as short as possible I have not been dx with Crohns. My GI keeps saying IBS. I had tests over the last 5 years( MRE small bowel back 4 yrs ago, CT as well, colonoscopy three years ago, blood tests and stool tests). They were all normal except I did have an elevated Calprotectin level back in August of last year (348.5) normal would be 162.9 and under. Also at the time my CRP was elevated somewhat, though I cannot remember the exact number. At the time I had been taking a medication for another health issue that may or may not have inflamed my gut. My GI doc was not concerned about these tests. He did not feel they were very elevated and said other things can slightly elevate these tests. So basically he blamed the whole thing on IBS and sent me on my way.

Fast forward, last month I got an abscess on my labia. It started out like a tiny lump under the skin( no pain or anything in that area) I figured it was an ingrown hair or whatnot. I did not even bother looking at it. After a few weeks it got bigger literally over night. I started putting hot compresses on it to get it to come to a head. It started leaking a little, but would not break open so I went to my dermatologist and she said it was an abscess and lanced it and drained it. She said it was likely an infected hair follicle or gland. The pathology showed e-coli bacteria in moderate amount. I used a antibacterial ointment on it and it seems to be healed so far. That was a month ago.

Now about a week ago my anal area started to bother me. I started getting achy pain inside my anal area and it just felt irritated inside. My primary care doc just prescribed me some Protozone HC hemorrhoid cream to use. I used it for three days and it only helped a little. When I had a BM yesterday morning after I wiped and showered my whole anal area and all around it was very irritated( like stinging and burning). I looked at the area and it looks irritated with blotchy pink marks. I called my GI doc and told him about everything that has been happening. He said to use Zinc oxide paste or like a vaseline type ointment to help with it. I started putting the zinc oxcide on it last night. I also have my period so that is Not helping matters with the blood an all.

I also had my Fecal Calprotectin test done again( I asked my primary care to order it) and just got the results today and they were normal ( 71.7) normal would be 162.9 or under. Also my CRP I had done on the 17th of April was normal.

I am just really concerned with all this that is going on. I am worried I may have some type of Crohns that is being missed due to all my issues and symptoms. Could this be anal crohn's symptoms? I am terrified I am going to get an anal abscess or something because there is irritation around that area. I am so worried about infection in that area since irritation can lead to infection.I also worry since I got an abscess on my labia that I am going to start getting them in other areas now. My GI doc says the one I got on my labia was more than likely just an infected hair gland and nothing more. I dont know what to think though, I mean I have never gotten an infected hair gland or follicle before in my life until this one!

I see my GI doc next week on the 13th. I plan on discussing this with him. I just feel like sometimes he dismisses my issues and just blames them on my other health issues. I have Interstitial Cystitis, Firbomyalgia etc.. and according to him IBS). Does IBS even cause anal irritation? I am not having the runs and only have 1 BM a day or every other day. I do get intestinal crampiness and pain as well as lots of Gas.My stool is usually is on the soft side though and is messy. I mean it takes me like a whole roll to get clean! I try and be as gentle as I can, but I still have to wipe( I use moistened toilet paper, never dry). I then soap up and shower to prevent UTI's since I am super prone. Also my stool is always lighter in color( like the color of coffee with cream in it). It has been that way for the last 5 years now. My GI told me to take sitz baths to help with the anal irritation but I told him I cannot due to my IC and UTI issue. My urologist said NO to that and to only do showers period.

Would my fecal calprotectin levels be normal if I had Crohn's or even just anal Crohns? I am still trying to learn about the Calprotectin test.

Sorry to ramble, I am worried concerned and do not know what to think. I mean what else could cause my anus to be so irritated on the outside and feel achy and irritated on the inside?? I am at a loss and worried

 

[ronroush7]

Maybe you should get a second opinion? They are not the answer all but I think if your fecal calprotectin is elevated there is more of a chance of it being Crohn's. Please let us know hoe you are doing?

 

[Ihurt]

Thanks Ronroush7! I am going to see what my GI says when I see him next week. If I feel he is not listening to my concerns and fluffing me off, I will have to look into getting another opinion. Will probably have to wait a bit to get in though as it seems when your a new patient there usually can be a couple month wait at least. I just want some answers to why I am having all these issues.

Maybe you should get a second opinion? They are not the answer all but I think if your fecal calprotectin is elevated there is more of a chance of it being Crohn's. Please let us know hoe you are doing?

 

[ronroush7]

Keep seeking.

 

[Catherine]

I don't think IBS can cause a risen faster calprotectin. I have a dx of IBS my faecal calprotectin never been above 19. There are other causes of raised calprotectin other than Crohn's

 

[Ihurt]

I guess the question is, if you have a normal calprotectin level what are chances you could still have Crohn's? I had an elevated level last year(348.5) where normal is 162.9 and under, along with an elevated CRP level.

I had it redone just a couple weeks ago and it was normal( 71.4), yet I am having issues with intestinal pain, anal pain and irritation. My CRP was also normal as well. I am just wondering how accurate these tests are? It seems some people on here have GI doctors who rely on them and yet there are some GI docs that do not even use these tests. My GI doc knows about the calprotectin test but has never ordered it for me, I asked my primary care doctor to order for me. Just curious about it all.

I don't think IBS can cause a risen faster calprotectin. I have a dx of IBS my faecal calprotectin never been above 19. There are other causes of raised calprotectin other than Crohn's

 

[eleanor_rigby]

I replied to your previous message but will share my experience with you here. I have crohns located in the terminal ileum. I have probably one normal BM a day or every other day. I cannot remember the last time I had diarrhoea but it won't have been 2016. It took me 10 years to get a diagnosis probably because of these symptoms. My only symptoms are bowel spasms, which are caused by my small intestine being narrow from inflammation and food struggling to get through. I do not have disease in the colon hence my symptoms. My calproctin was 65 and my SMALL bowel was in a state that did not even respond to steroids very well and after 4 months of treatment I am now hopefully starting to get a little better. Therefore the calproctin test is reliable for some people but not others. Until you repeat your colonoscopy you don't know which category you fit into.

 

[eleanor_rigby]

http://www.calprotectintest.com/english/calprest.html

This website says a result above 50 is a positive result. I would have a google as well you will find similar research.

 

[Ihurt]

That would make sense that the Calprotectin would not be detected unless the inflammation was in the colon. I do not have any issue so far with my upper gut, my pain is definitely located in my lower bowel and now my anal area as well is irritated.


I asked my primary care doc about the Calprotectin levels and she said different labs give different ref ranges depending on how they run the test. I got mine done through Quest and they claim anything 162.9 or under is considered normal.

I agree, I think these kinds of tests are only so reliable and can cause false negatives and false positives.

I replied to your previous message but will share my experience with you here. I have crohns located in the terminal ileum. I have probably one normal BM a day or every other day. I cannot remember the last time I had diarrhoea but it won't have been 2016. It took me 10 years to get a diagnosis probably because of these symptoms. My only symptoms are bowel spasms, which are caused by my small intestine being narrow from inflammation and food struggling to get through. I do not have disease in the colon hence my symptoms. My calproctin was 65 and my SMALL bowel was in a state that did not even respond to steroids very well and after 4 months of treatment I am now hopefully starting to get a little better. Therefore the calproctin test is reliable for some people but not others. Until you repeat your colonoscopy you don't know which category you fit into.

 

[Ribo]

I guess the question is, if you have a normal calprotectin level what are chances you could still have Crohn's? I had an elevated level last year(348.5) where normal is 162.9 and under, along with an elevated CRP level.

I had it redone just a couple weeks ago and it was normal( 71.4), yet I am having issues with intestinal pain, anal pain and irritation. My CRP was also normal as well. I am just wondering how accurate these tests are? It seems some people on here have GI doctors who rely on them and yet there are some GI docs that do not even use these tests. My GI doc knows about the calprotectin test but has never ordered it for me, I asked my primary care doctor to order for me. Just curious about it all.

One thing I have found is that Crohn's is a very individual disease. My fecal calprotectin levels are almost always normal, my CRP never shows elevated, yet my doc ran a capsule study revealing both stricturing and active CD in my mid-small bowel. An uncommon place to be sure, yet a positive result when all else was indicating it wasn't Crohn's.

You need a doctor that keeps looking. You need to make sure they keep looking.

 

[Ihurt]

Thanks for the advice. I wish all doctors thought the same way you do. My pain is definitely in my lower bowel, I can tell. But it just goes to show that these tests ( stool, blood) are very limited. Maybe that is why my GI does not even use them.

One thing I have found is that Crohn's is a very individual disease. My fecal calprotectin levels are almost always normal, my CRP never shows elevated, yet my doc ran a capsule study revealing both stricturing and active CD in my mid-small bowel. An uncommon place to be sure, yet a positive result when all else was indicating it wasn't Crohn's.

You need a doctor that keeps looking. You need to make sure they keep looking.

 

[my little penguin]

The thing to remember is you can have horrific pain constant diarrhea not be able to eat and still not have crohns.
It's the actual damage seen to the intestine that either macroscopically or microscopically
It doesn't mean you don't have something going on or that the symptoms aren't real it just means it may not be crohns.
Ds currently is having a flare
Numerous watery D abdominal pain etc...
Tested for infection - none
Scopes /pill cam etc were all good
But in his case severe protein intolerance and needed an elemental formula to help resolve the symptoms to stop the motility issues
Does he still have crohns -yes
But was crohns causing the problems - nope

So sometimes looking outside of the box is key
Good luck

 

[Clash]

I agree with MLP, it's important to not focus in on one dx. There are numerous GI issues and conditions that can cause the same symptoms CD does.

As far as fecal calprotectin, there are studies that have shown that the further into the small bowel the disease is active the less accurate fecal calprotectin can be but other studies has countered that. Fecal calprotectin stool test is not a diagnostic test. All tests have a percentage of error. If you google the specificity of the FC test you can find the error rate.

Just keep advocating for yourself for answers and maybe not specifically "do I have IBD" but what is the cause of my issues.

Hope you are able to chase up answers, find relief which will enable you to let go of the anxiety and stress this is causing you.

 

[Ihurt]

Thanks for the replies My little penguin and Clash.

I totally get and agree that there are other issues that can cause the same symptoms. I am frustrated because new things keep popping up. Now I have anal pain and achiness as well as irritation in there. I have been trying creams, ointments, Hemorrhoid ointments and such and not getting a ton of relief inside. The zinc oxide helps the outside, but the inside still not good. I do have hemorrhoids that swell a little, but the pain is still there even when there is not much swelling. I guess with all these issues that keep happening I am just concerned and want to know what is going on. I hope my GI doc will be able to shed some light when I see him next week. Thanks again for all the replies, I appreciate the support.

 

[my little penguin]

You really need to see a Gi who thinks outside the box
Ds Gi is never happy with - well ds doesn't fit xyz so - do nothing approach
The doc keeps looking and keeps trying different things even if we are not sure if the exact root cause .

Good luck

 

[Ihurt]

Thanks, I am currently trying to search for different GI doctors right now. I have no clue where to go though in order to find one who looks outside the box. I had a GI doc like that years ago, but he moved out of state. He was the best and he was Hard to find. I went through 4 different GI docs before finding him. I wish he did not leave the state

You really need to see a Gi who thinks outside the box
Ds Gi is never happy with - well ds doesn't fit xyz so - do nothing approach
The doc keeps looking and keeps trying different things even if we are not sure if the exact root cause .

Good luck

 

[Scared1]

Hi! Any update? I hope you were able to find a doc that can clear this up!

 

[Ihurt]

I saw my GI doc today. He looked at the anal area and did the finger exam inside. He said he thinks it is likely a fissure. He said they usually heal on their own. He gave me lidocaine gel or something on that order to put in there to help with the pain. I also asked him about nitroglycerin cream that is suppose to help heal fissures. He gave me a script for it but warned me it can cause side effects and bad headache in 50% of people who use it.

I am unsure what to think. I have pain and achiness in the anal canal on the left side. I thought fissures only hurt when you had a Bowel movement. Mine is hurting all the time. I am worried it will get infected being it is inside the anus, I mean there is no way to keep it clean as it is inside.

Hi! Any update? I hope you were able to find a doc that can clear this up!

 

[Scared1]

I saw my GI doc today. He looked at the anal area and did the finger exam inside. He said he thinks it is likely a fissure. He said they usually heal on their own. He gave me lidocaine gel or something on that order to put in there to help with the pain. I also asked him about nitroglycerin cream that is suppose to help heal fissures. He gave me a script for it but warned me it can cause side effects and bad headache in 50% of people who use it.

I am unsure what to think. I have pain and achiness in the anal canal on the left side. I thought fissures only hurt when you had a Bowel movement. Mine is hurting all the time. I am worried it will get infected being it is inside the anus, I mean there is no way to keep it clean as it is inside.

Hmmm...my husband has the exact same symptoms - actually his story kind of mimics yours. They diagnosed him with mild mild crohns (their words) because he has terminal ilietis but everything else was normal except he had some anal pain. What has helped him most is sitting in a hot bath nightly for like 30 min, have you tried that? It actually alleviated his anal pain quite a bit...its worth a shot?

 

[Ihurt]

Wow, sorry your husband is having this issue too. I am unable to sit in any bath, I can only take showers. I have IC of the bladder and am Very prone to UTI's so my urologist says Only showers because there is too much risk of spreading bacteria from the anal area to the vagina when sitting in water. I really have to be diligent not to get another UTI because it is extremely hard to treat them if I do get one now because of resistance to a lot of the antibiotics and the ones that would work I cannot take due to severe adverse reactions. It is very scary.

I have been trying to use a very warm heating pad and I place is against the area. I figure it would be similar to the bath since it is drawing heat to the area.

My GI doc wont even consider Crohn's. He is stuck on my having IBS because he keeps saying all my tests I had( MRE of small bowel 4 yrs ago, colonoscopy 3 yrs ago, and blood work) have all been normal except once my CRP was elevated but it went down after a couple months so he was not concerned.

I just feel something is going on. I have never had any type of anal pain like this before. I saw my GI yesterday and he felt around in there and said he thinks i Have a fissure. It is Not on the outside though, it is right on the inner canal so I cannot see it, but I feel the awful pain in that area. Mine is on the inner left side of the anal canal( well that is where I am feeling the pain). He gave me a script for lidocaine gel to put up there to help with the pain. He said I could try nitroglycerin ointment but said it would cause side effects like severe headache. I also already have low blood pressure so I would have to be careful since it can make the blood pressure drop. He said fissures usually will heal on their own with time. I always though fissures happened if you were constipated or something. I have Not been constipated at all and I haven not had diarrhea either, just soft poops which is what they recommend to people who have a fissure! so I am not even sure how I got this.

I am so frustrated and in pain and feel lost.














QUOTE=Scared1;933653]Hmmm...my husband has the exact same symptoms - actually his story kind of mimics yours. They diagnosed him with mild mild crohns (their words) because he has terminal ilietis but everything else was normal except he had some anal pain. What has helped him most is sitting in a hot bath nightly for like 30 min, have you tried that? It actually alleviated his anal pain quite a bit...its worth a shot?[/QUOTE]

 

[Ribo]

I saw my GI doc today. He looked at the anal area and did the finger exam inside. He said he thinks it is likely a fissure. He said they usually heal on their own. He gave me lidocaine gel or something on that order to put in there to help with the pain. I also asked him about nitroglycerin cream that is suppose to help heal fissures. He gave me a script for it but warned me it can cause side effects and bad headache in 50% of people who use it.

I am unsure what to think. I have pain and achiness in the anal canal on the left side. I thought fissures only hurt when you had a Bowel movement. Mine is hurting all the time. I am worried it will get infected being it is inside the anus, I mean there is no way to keep it clean as it is inside.

I've used the nitro cream in the past - and have to stop. It makes my heart race, head ache, I just feel all screwy when I use it.

I also use a cortisone-based cream, which generally helps.

And in my experience, the pain is not isolated to 'during a BM,' but is generally pretty constant.

 

[Ihurt]

Wow, okay. Yeah I am nervous to use the nitro ointment. MY GI did tell me it would cause a headache. He did not mention the racing heart. I already am prone to getting tachycardia as it is. I also get PVC's from time to time.

I asked him about a cortisone cream and he said it would be counterproductive and would not help. When you had the fissure, was in inside the anal canal? Mine is inside where I cannot see it from looking at the outside. Do you find that the cortisone cream helped you heal the fissure?

I've used the nitro cream in the past - and have to stop. It makes my heart race, head ache, I just feel all screwy when I use it.

I also use a cortisone-based cream, which generally helps.

And in my experience, the pain is not isolated to 'during a BM,' but is generally pretty constant.

 

[Ribo]

Wow, okay. Yeah I am nervous to use the nitro ointment. MY GI did tell me it would cause a headache. He did not mention the racing heart. I already am prone to getting tachycardia as it is. I also get PVC's from time to time.

I asked him about a cortisone cream and he said it would be counterproductive and would not help. When you had the fissure, was in inside the anal canal? Mine is inside where I cannot see it from looking at the outside. Do you find that the cortisone cream helped you heal the fissure?

Keep in mind that everyone's experiences are different - I can only share mine. I have no idea how common or uncommon the heart palpitations are, only that this was my experience. And I'm not trying to point you away the nitro - far from it. My recommendation would be to try it and see!

Yes, it was internal. I should also point out that I have since moved on to a new GI, as the old one was, um not progressing my recovery and treatment effectively.

I do now have internal hemorrhoids (not fissures) but the new GI also treats them with a (different) cortisone based cream.

 

[Ihurt]

Thank you for your support, it is greatly appreciated. I am probably going to be looking for a different GI doc as well. My GI doc first off is likely to retire soon, he is already only working part time. It takes about 2 months to even get in to see him now and he only has office hours available one day a week. It is not very convenient at all. Thanks again for your advice and support.

Keep in mind that everyone's experiences are different - I can only share mine. I have no idea how common or uncommon the heart palpitations are, only that this was my experience. And I'm not trying to point you away the nitro - far from it. My recommendation would be to try it and see!

Yes, it was internal. I should also point out that I have since moved on to a new GI, as the old one was, um not progressing my recovery and treatment effectively.

I do now have internal hemorrhoids (not fissures) but the new GI also treats them with a (different) cortisone based cream.

 

[magy35]

Hi! Hope you are healing well.

Wanted to send a quick response in regards to the comment you made about the color of your stool being pale. Have you had you gallbladder removed or had anyone check you for gallstones or gallbladder issues? The brown color of stool is made by the fluid produced by your gallbladder. Lack of color is usually a sign to look at your gallbladder.

The labia cyst definitely sounds like an outlier. They can happen out of nowhere and E. Coli is the bacteria found naturally below the belt so I would heed your doctor's advice on that one...

As for your concerns about worsening infection related to the fistula, follow the doctor's orders and use the medication as directed and all shall be well. Once there is no longer an open wound, stool should pass without risk of infection. I am sure your doctor had the area in mind when he gave you medications.

Anyways, really just wanted to ask about your gallbladder and hope all is well.

Maggie

Hey guys,

I am sorry if I am starting to sound like a broken record, I am just trying to figure stuff out. I don't want to go into my whole history again, but to put it as short as possible I have not been dx with Crohns. My GI keeps saying IBS. I had tests over the last 5 years( MRE small bowel back 4 yrs ago, CT as well, colonoscopy three years ago, blood tests and stool tests). They were all normal except I did have an elevated Calprotectin level back in August of last year (348.5) normal would be 162.9 and under. Also at the time my CRP was elevated somewhat, though I cannot remember the exact number. At the time I had been taking a medication for another health issue that may or may not have inflamed my gut. My GI doc was not concerned about these tests. He did not feel they were very elevated and said other things can slightly elevate these tests. So basically he blamed the whole thing on IBS and sent me on my way.

Fast forward, last month I got an abscess on my labia. It started out like a tiny lump under the skin( no pain or anything in that area) I figured it was an ingrown hair or whatnot. I did not even bother looking at it. After a few weeks it got bigger literally over night. I started putting hot compresses on it to get it to come to a head. It started leaking a little, but would not break open so I went to my dermatologist and she said it was an abscess and lanced it and drained it. She said it was likely an infected hair follicle or gland. The pathology showed e-coli bacteria in moderate amount. I used a antibacterial ointment on it and it seems to be healed so far. That was a month ago.

Now about a week ago my anal area started to bother me. I started getting achy pain inside my anal area and it just felt irritated inside. My primary care doc just prescribed me some Protozone HC hemorrhoid cream to use. I used it for three days and it only helped a little. When I had a BM yesterday morning after I wiped and showered my whole anal area and all around it was very irritated( like stinging and burning). I looked at the area and it looks irritated with blotchy pink marks. I called my GI doc and told him about everything that has been happening. He said to use Zinc oxide paste or like a vaseline type ointment to help with it. I started putting the zinc oxcide on it last night. I also have my period so that is Not helping matters with the blood an all.

I also had my Fecal Calprotectin test done again( I asked my primary care to order it) and just got the results today and they were normal ( 71.7) normal would be 162.9 or under. Also my CRP I had done on the 17th of April was normal.

I am just really concerned with all this that is going on. I am worried I may have some type of Crohns that is being missed due to all my issues and symptoms. Could this be anal crohn's symptoms? I am terrified I am going to get an anal abscess or something because there is irritation around that area. I am so worried about infection in that area since irritation can lead to infection.I also worry since I got an abscess on my labia that I am going to start getting them in other areas now. My GI doc says the one I got on my labia was more than likely just an infected hair gland and nothing more. I dont know what to think though, I mean I have never gotten an infected hair gland or follicle before in my life until this one!

I see my GI doc next week on the 13th. I plan on discussing this with him. I just feel like sometimes he dismisses my issues and just blames them on my other health issues. I have Interstitial Cystitis, Firbomyalgia etc.. and according to him IBS). Does IBS even cause anal irritation? I am not having the runs and only have 1 BM a day or every other day. I do get intestinal crampiness and pain as well as lots of Gas.My stool is usually is on the soft side though and is messy. I mean it takes me like a whole roll to get clean! I try and be as gentle as I can, but I still have to wipe( I use moistened toilet paper, never dry). I then soap up and shower to prevent UTI's since I am super prone. Also my stool is always lighter in color( like the color of coffee with cream in it). It has been that way for the last 5 years now. My GI told me to take sitz baths to help with the anal irritation but I told him I cannot due to my IC and UTI issue. My urologist said NO to that and to only do showers period.

Would my fecal calprotectin levels be normal if I had Crohn's or even just anal Crohns? I am still trying to learn about the Calprotectin test.

Sorry to ramble, I am worried concerned and do not know what to think. I mean what else could cause my anus to be so irritated on the outside and feel achy and irritated on the inside?? I am at a loss and worried

 

[Ihurt]

Hey there,

Thanks for the reply and advice.

I still have my gallbladder and do not have any stones that I am aware of, at least they were never picked up on any of the scans and ultrasounds I have had. Now I know I have heard of some people whose gallbladder does not have stones, but does not function at all. I think there is a certain scan ( Hida scan) they do to check for that. However, I would not ever rush into having it removed as it can cause worse issues with constant diarrhea.

I also wonder if maybe my liver is not working exactly as it should or not throwing enough bile out or maybe throwing too much bile out. I just dont know. I mean my stools have been light for a long time. Usually tan in color or sometimes with an orange kind of color. I brought it up to my GI doc and he did not even seem phased by it at all. I just know it is not the color of healthy stool.

Hi! Hope you are healing well.

Wanted to send a quick response in regards to the comment you made about the color of your stool being pale. Have you had you gallbladder removed or had anyone check you for gallstones or gallbladder issues? The brown color of stool is made by the fluid produced by your gallbladder. Lack of color is usually a sign to look at your gallbladder.

The labia cyst definitely sounds like an outlier. They can happen out of nowhere and E. Coli is the bacteria found naturally below the belt so I would heed your doctor's advice on that one...

As for your concerns about worsening infection related to the fistula, follow the doctor's orders and use the medication as directed and all shall be well. Once there is no longer an open wound, stool should pass without risk of infection. I am sure your doctor had the area in mind when he gave you medications.

Anyways, really just wanted to ask about your gallbladder and hope all is well.

Maggie

 

[jbrad]

Lhurt,

The abscesses you have started having sound to me like Hidradenitis Suppurativa (HS for short). My Dr is currently running tests for Crohns but I have suffered from HS for years. If you google it is there is research that says 40% of HS sufferers have Crohns. I have, however, discovered online that my trigger for HS are nightshades (potatoes, tomatoes, paprika, bell peppers, chillis, tobacco, etc). My 12 yo daughter also suffers from it and has cleared up as well by avoiding nightshades. It is not easy as I have to cook almost everything from scratch as paprika is in everything, either as a flavor or the food colour 160c. Eating out is ridiculously difficult but the lack of pain is worth it.

I hope this helps

 

[Ihurt]

I looked up HS and it did not really resemble what I have. Isn't HS where you get multiple pimple like boils around the area where there is sweat glands( groin, under arms etc..)?? My abscess looked just like one lump and when it first appeared it was like a small hard lump under the skin. It turned into an abscess. The dermatologist said it looked like an infected hair follicle or gland. Would my dermatologist know if I had HS by looking at it?

My diet is limited too. I always cook from scratch and only eat organic. I do consume potatoes, but no grains like rice and I am gluten free. I literally eat only a handful of things because my gut and other health issues are sensitive to lots of foods. I have been eating potatoes though for years and they have not ever bothered me before. I try not to eat them daily though. I also eat a lot of summer squash and zucchini. What does your HS look like? Is it just one bump or multiple ones? Also where do you get them?

Lhurt,

The abscesses you have started having sound to me like Hidradenitis Suppurativa (HS for short). My Dr is currently running tests for Crohns but I have suffered from HS for years. If you google it is there is research that says 40% of HS sufferers have Crohns. I have, however, discovered online that my trigger for HS are nightshades (potatoes, tomatoes, paprika, bell peppers, chillis, tobacco, etc). My 12 yo daughter also suffers from it and has cleared up as well by avoiding nightshades. It is not easy as I have to cook almost everything from scratch as paprika is in everything, either as a flavor or the food colour 160c. Eating out is ridiculously difficult but the lack of pain is worth it.

I hope this helps

 

[jbrad]

My first boil was on my labia too. It was also lanced and left. I was around 44 at the time. I have since had more around that area and on my inner thighs. I never had anything prior to that but over time got more and more. I ate most things prior to then and potatoes and tomatoes were a staple. I went gluten free but then discovered most of the food I ate had potato starch in it. We are also dairy free. We eat spelt now ( I know it has gluten but is a better alternative to wheat for us). I didn't think something I had eaten all my life (nightshades)could start causing problems but that is how it happened for me. It may not be the same for you. It was just a suggestion. I just found the connection to Crohn's interesting.

 

[Ihurt]

Thanks, I mean that is an idea. I wonder if I went to see my dermatologist would she be able to tell me if I had this?

I have not even been diagnosed with Crohns ( my GI doc thinks I have IBS). My symptoms are not typical for IBS though. I am having all kinds of issues. I have other health issues as well ( Interstitial Cystitis) which is by far the worst disease I have dealt with and the most painful. I would not wish it on anyone.

Is there is way I can find out if I have this HS?

Yikes, if I had to give up potatoes I would have even less to eat. I literally only eat a few things ( potatoes, acorn squash, zucinni, summer squash, green beans cooked very well). That is it in the veggie and carb department. As far as meat I only eat chicken, turkey and fish. I can eat eggs too. I also can only do limited spices . I use Garlic, salt and sage and parsley, that is it.

Yeah, I have to avoid all Gluten as I am super sensitive to it. I have been gluten free for almost 11 years now. I do agree with you though, diet can really play a huge role in body reactions. Now I am curious as how to see if I Have HS. When you had your first abscess, how did it start? Mine was not a visible red bump at all. In fact there was no redness it was like a tiny hard lump under the skin for like two or three weeks. I had something like it three years ago but it just disappeared on it's own. This one got bigger one day out of the blue like overnight and turned into an abscess ( got infected somehow).

I have a history of eczema ( had it when I was little) and my skin is super sensitive now too. I get these tiny red itchy burny bumps under my breasts that come and go( dermatologist said it was eczema). It goes away when I put hydrocortisone on it. I also get these odd bumps that form on my legs usually. They start out as just a very pink bump and it will turn purple and fade like a bruise over a few days. I find this happens when I consume something I am allergic to. It has happened with a few medications I Have taken. So I definitely have skin issues.

My first boil was on my labia too. It was also lanced and left. I was around 44 at the time. I have since had more around that area and on my inner thighs. I never had anything prior to that but over time got more and more. I ate most things prior to then and potatoes and tomatoes were a staple. I went gluten free but then discovered most of the food I ate had potato starch in it. We are also dairy free. We eat spelt now ( I know it has gluten but is a better alternative to wheat for us). I didn't think something I had eaten all my life (nightshades)could start causing problems but that is how it happened for me. It may not be the same for you. It was just a suggestion. I just found the connection to Crohn's interesting.

 

[jbrad]

Honestly I'm not sure about the dermatologist. You could try. I saw 2 Drs who told me I had a staff infection. I found Primalgirl on the internet wrote a book called the hidden plague and I read her blog and decided to try nightshade free. Primalgirl said her problem is potato but I am not game to try and see which is a problem for me. HS forums now have plenty of people who say they have found relief with no nightshades. My husband has psoriasis which they also say responds to no nightshades.

I did however just look on line and it may not be HS. I read it may be Bartholin's abscess. I guess this was what I had first then the hs started. Maybe they're not connected.

I too have been sick for well over ten years. I no longer work from fatigue and have been diagnosed with hypothyroidism. The Drs can't believe that I am better but still not there yet. I have heaps of digestive issues, corneal lesions, malnourishment etc etc. Once I informed my Dr that the absccsses I have are HS it has lead her to rethink and look down the crohns line. Sometimes we need to be our own advocate. Thankfully I have a wonderful Dr who listens to my findings the takes them and does her own research. She has had me on compounded vitamins for ages which I cannot live without. The problem is I do not have diarrhea but severe constipation and am obese ( I wasn't before all this started). It has been a long road bu hopefully some answers will come.

 

[Ihurt]

Wow, I am sorry you are also suffering with various health issues. Yes, you are so right, we have to be our own advocates. I have a pretty good primary care doctor, but she is limited. I have had to do all the work getting help and researching with all my illnesses since getting sick. It came to a point where I actually knew more about my IC( Interstitial Cystitis) than my urologist did! He was asking me to drop off info to his office that I happened to come upon saying he was so busy and did not have all the time to do the research! Unreal.

I am definitely up to trying giving up nightshades just to see if I get any better with my skin issue. Oh I dont think my abscess was Bartholin's gland because mine was not near the vagina opening at all. Mine was kind of on the left side of the labia but a little lower. After I had it lanced and it had healed I saw my gyne and showed it to her and she did not say anything about it being a bartholin's gland. She just said same thing the dermy doc said, that it was probably an infected hair follicle or gland. I will say it is the first time I have ever had an abscess though in my life.

I am sorry you are dealing with all the issues too. I do not have diarrhea either and I don't have constipation. I do get very soft poops at times though, like pudding consistency but usually it is just on the soft side. I however will get lots of pain and cramping. There were times the pain is so bad that I literally will sit with my heating pad all day just for relief.

Is your constipation related to the hypothyroidism?

Honestly I'm not sure about the dermatologist. You could try. I saw 2 Drs who told me I had a staff infection. I found Primalgirl on the internet wrote a book called the hidden plague and I read her blog and decided to try nightshade free. Primalgirl said her problem is potato but I am not game to try and see which is a problem for me. HS forums now have plenty of people who say they have found relief with no nightshades. My husband has psoriasis which they also say responds to no nightshades.

I did however just look on line and it may not be HS. I read it may be Bartholin's abscess. I guess this was what I had first then the hs started. Maybe they're not connected.

I too have been sick for well over ten years. I no longer work from fatigue and have been diagnosed with hypothyroidism. The Drs can't believe that I am better but still not there yet. I have heaps of digestive issues, corneal lesions, malnourishment etc etc. Once I informed my Dr that the absccsses I have are HS it has lead her to rethink and look down the crohns line. Sometimes we need to be our own advocate. Thankfully I have a wonderful Dr who listens to my findings the takes them and does her own research. She has had me on compounded vitamins for ages which I cannot live without. The problem is I do not have diarrhea but severe constipation and am obese ( I wasn't before all this started). It has been a long road bu hopefully some answers will come.

 

[jbrad]

I'm not sure. It has been up and down ( the worst being 8 weeks back up), I hope you find the answers you need.

 

[Ihurt]

Thank you! Hope you feel better soon too..

I'm not sure. It has been up and down ( the worst being 8 weeks back up), I hope you find the answers you need.