Stephen... Remicade now...

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Glad to hear the cough and phlegm are clearing up. I wouldn't think there would be an issue with the infusion. Hope the burn subsides quickly, poor S!
 
Oh my goodness Tess! I have missed so much. :ghug:

It is so good to hear things are getting better on all fronts. Phew! They are still heading in the right direction aren’t they?

Dusty. xxx
 
Thanks Dusty :) Yes, all getting back on track!

So far, so good re the phlegm... And sunburn pretty much gone (just lots of peeling now - yuck!! :eek:)
 
:lol: He's become so used to me saying 'let me see', that eventually, I didn't need to ask... I walked in the room, he said the burn was better and proceeded to pull off his t-shirt to show me... ewww, a cloud of dead skin arose! :eek: THAT I didn't need to see! :lol:
 
Stephen's been diagnosed with molluscum. :( It's not bothering him in the sense that it's not painful, or itchy, etc., however, it's appearance is very upsetting to him.

Anyone have any suggestions? So far, we haven't done anything special for it (diagnosed last week). Can anyone tell me how easily it can spread (both within himself and to others)? And should we be expecting it to spread/worsen before it gets better? So far, I've told him to use a separate towel when drying off the affected area and be sure to not stay in damp clothes (ie after gym, etc.) but not sure if there's more we should be doing??

He was diagnosed through the ER dept. so we didn't get much instruction from dr (other than it will go away on it's own, in time...). We're going to set up an apptmt with his GP and get a referral to a derm but, it might end up taking a while to set up the apptmts - with S being out of town, it makes it so much more complicated to try to schedule.

Also, any concerns re remicade? His next infusion isn't until Oct. 11.

Any suggestions would be appreciated! :)
 
Swimmers are at one with molluscum. We wait it out. So does everyone else on the team. It is really nothing. Just a viral thing. Some derms will freeze it and cut it off for you if you want. We did that once and O said it hurt like a dickens and then it got infected and scarred. We wait it out now. It never spread to other members of the family and we are in no way careful.
 
How long did it take to run it's course? I've read anywhere from a few weeks to 4 years!

And, no concerns with remicade?
 
No concern with remi. Months. I don't remember how many and which time but they eventually clear on their own. How big an area is affected? O always gets them on her shoulders, lower neck and upper back but not widespread.
 
Oh and because they are immune suppressed and susceptible to viral infections, O gets them frequently. You know I am a crazy natural girl and love oil of wild oregano for all ills. It is a natural anti fungal and bacterial agent. Maybe put a couple drops in evoo and spread over te lesions. Also, two drops under the tongue works wonders for us and all kinds of skin issues.
 
Andrew had them for about a year and a half on his inner thighs. It was awful because his legs rubbed together as he walked they were sore and bleeding. We were told nothing could be done. We did desperate towels for him and I would wash the bath after he had been in. Eventually we got a derm appt, he used some sort of chemical to make them blister and then pop, wasn't very nice - caused an allergic rash on his legs but it did the trick and cleared them up.
 
He's got them on his groin and privates area. Since being diagnosed, he says it's spread a bit. I guess it could be worse... :(

He's done a bit of his own research and wants to have them removed. :eek: But, I've told him I've read it can be painful, at the best of times! And, given the location of his rash... :yfaint:

Poor guy actually had a horrible experience!! When he noticed it, he immediately went to the local ER at around 10pm. He said the Dr took a 15 sec look and ran a urine test. Then, I seriously believe they forgot about him because he fell asleep on the bed and woke at 7:30 am! When he went looking for the doctor, she came back and said she was 75% sure it was herpes - even though his circumstances seemed unlikely (one girlfriend, always protected and girlfriend coincidentally was just tested in July because of her job). Anyway, dr insisted that's what she thought, her only doubt due to his lack of pain, and didn't offer any other possibilities. You can imagine how completely distraught and panicked he was, so I picked him up and brought him to his GI's hospital (large, well known hospital). New dr. examined him (bit longer than 15 secs!) and said he was confident S had nothing serious to worry about and dx molluscum. To be certain, he brought in a more senior dr to confirm. Senior dr agreed but, to further confirm, did a culture which has come back negative for HSV.

So, given S's (and our) concern with the initial dx, molluscum is a breeze. :) But, still not a nice thing.

Really upset with this first doctor though. From what I've read, a urine test isn't even a standard test for HSV (but I could be wrong)??? I don't know why she would've created so much panic in him (and us) after such a quick and superficial examination. AND, S did call that hospital back for the results anyway and was told 'if we haven't called you, it's fine' - so, I'm even more confused about her logic because if she did think HSV but didn't test for it, S could have had it but wouldn't know because the other tests were fine??? Still considering if it's worth writing to their patient services dept to complain...

But, for now, just relieved that, while annoying, it's a manageable problem. :)

I've read a bit of Thuja (sp??) and tea tree oil but wondering if they'll really help??
 
Both my girls had molluscum. Spread around A's dance team....she brought it home and passed it to lil sis. They both had it on their thighs and bottoms. M's actually got infected so we used an oral antibiotic and steroid cream. Can't say that really helped though. We had to wait it out, let the virus run its course. Took several months (maybe 6?). If any open cover with a band-aid to try to prevent infection. Infected ones get pretty yucky and painful.
 
Wish he was home so I could be more on top of this, with constant reminders, questions, etc.! :eek:
 
Is he bad about answering texts or calls? My older daughter is. I tell her if she doesn't answer her phone, I'll show up at her school. That usually gets a response pretty fast ;)

I hope it clears up soon!
 
:lol: He's not bad about answering but, easy enough to say 'yessss, mom, did that and that and that.... {rolling eyes}'... :ybatty:

Husband went to see him yesterday - I sent him lots of white hand towels with instructions to use once and throw in laundry, more white bath towels so he can replace, at most, every two showers, another set of bed sheets (white), more underwear (white)... all white so all can be bleached! Paper towels, toilet cleaner, all purpose cleaner, shower cleaner, bleach, Clorox wipes, etc. :lol: I've been on and on with him about how extremely important it is right now to be hyper hygienic right now and, angel that he is, he's always said 'Thanks, mom!! I completely understand! Trust me, I really want to clear this up!'... My hubby walks in his room to deliver my cleaning supplies and there are clean clothes piled on the floor and S's comment... 'oh, I just put them there yesterday, they're still good'! OMG, just shoot me! :ybatty:

Think I'm going to tell him to send me a video clip of his room each day and his 'allowance' will be dependent on how it looks! :ytongue:
 
Thanks xmdmom.

I suppose this leaves him vulnerable to future outbreaks?? I don't mean that the virus remains dormant (at least my understanding is that it doesn't) but I guess you are just more susceptible if immunosuppressed. :(
 
Hope things clear up soon .
DS has had wAy more skin issues on biologics.
His dermo knows crohn's so we are good there
 
Farmwife said:
:rof: Make sure he holds the newspaper up to get the correct date.:rof:
Click to expand...

FW, that had crossed my mind! :ylol: I clarified the 'clean' clothes on the floor issue... apparently, it's okay as they were the 'dirty' clothes :yrolleyes: because the laundry basket was still full from the last clean load! Sooo relieved that it was only dirty clothes on the floor! :drink:

But, did reinforce the importance of neatness once again. :)

(And, MLP, you're so lucky that DS is not ever allowed to grow up! ;))
 
Both boys got them first one and then about a month later the other yes took months for them to go away. We were told the goo inside is what spreads touch that and somewhere else and bam new infected area, we tried to keep them covered until they "popped"
 
:ylol: I can just picture the pile of laundry. I think they just say yes mom and then it floats out their heads! I seem to remember that silver is really good for healing. When some of Andrew's spots got quite inflamed we got silver dressings from the chemist and they did help
 
I googled photos of molloscum out of curiosity and now I'm wondering if that's what's on the tip of DS's nose! We just assumed it was acne, but... maybe not? How can you tell the difference? It's been there two weeks now and he's been using benzyl peroxide daily to no avail. Thankfully, he hasn't "popped" it because we're worried it could get infected (assuming it's acne).

I'll try and get a photo when he gets home from school. Not sure he'll let me...
 
Not sure how you would tell the difference. S says his are like little pimples and they're not painful nor itchy. In our case, the drs had also given the possibility of folliculitis - so, it seems visual examination may not be 100% confirmation. I'm assuming S has molluscum because I don't think (although I don't know for sure) folliculitis would spread (and S says it has spread a bit). In either case, there was no treatment, just time.
 
A dermatologist would be able to tell you for sure. I think molloscum has a dip in the middle. I thought my son had that on his hand. So did the GI. We went to the dermatologist. It was a wart. It was gone with 2 freeze treatments.
 
Can a wart grow in just two weeks?

(Sorry to steal your thread, Tess.)

I have a teenage boy whose confidence in getting a Homecoming date shrinks as the wart/acne/molluscum on the tip of his nose grows. Fun!
 
My daughter had molluscum, 3 on her shoulder, when she was smaller. We gave them time but I think in the end the derm decided on freezing them or something. I don't remember the details but now she has three tiny hole shaped scars, barely noticeable. It seems the derm at the time said she may get more but I can't remember. Anyway, she never has.

Sending hugs, Mehita and Tesscorm
 
No worries at all, Mehita. ;) But sorry, don't have any real advice re a wart. My daughter had a wart years ago on her finger, we used an OTC (common) treatment suggested by pharmacist and it healed. (But, was so long ago, I can't remember what it was nor how long it took.)

S has decided to wait for his physical (mid October) to see his GP and then request a referral to derm (he's hoping it'll already be going away by then). It gets tricky with apptmts when he has classes every day but is about two hours away. I have no reason to doubt the molluscum dx but do think it's a good idea to have a derm look at it to be sure (and S can discuss freezing/removal :eek:).

But, FW made me think of something... I imagine his immune system is trying to fight the molluscum now, so do you all think there'd be any concern with getting his flu shot? I have no idea if there'd be any connection at all but just wondering if it could be 'overload' on a suppressed immune system?
 
We did use a silver solution on the molluscum but I don't know if it was what finally got rid of them or just time but we did use a product it was like the liquid bandage with silver in it. It was about 5 months in so again not sure if it was that or time but they did go away once we started using it.
 
Tess,
JMs idea about using colloidal silver to help it clear up is actually not a bad idea. Two things though use small a out a and I know longer reccomend taking colloidal silver internally. We used to take some by mouth to get rid of colds until we heard about someone whose skin turned silver from using it to much.
Anyway back to your question about the urine test for HSV,
This is a list of how it is tested, they can test urine if the sores are on the urethra otherwise no it would not give an answer,
http://www.webmd.com/genital-herpes/herpes-tests
I would definitely write in about that doctor and her behavior.
Hope Stephen is doing better.
 
Thanks Kim.

We will ask his GP about the silver. His apptmt is mid October - probably better to treat asap to try to minimize spreading but, just tougher to follow-up properly when he's away. Says it hasn't spread anymore so I'm hoping this is the worst of it and we just have to be patient...
 
Ugghh, spoke too soon. Spreading to stomach and neck... :ymad: Trying to get apptmt now with GP for next week.
 
Good news from S's scopes -- all clear, no issues, no inflammation! :D

Unfortunately, his GI did not come out to speak with us. He was scheduled with another scope so it was only the nurse who passed on the info. I would rather have spoken to him.. you know... biopsies? how many? no inflammation but any narrowing? etc. But, I'm certainly happy with the news we got! Told S not to worry, I'll call for results and, with the committee's help, will have any questions answered lickety split! ;)
 
Also get copies of the GI notes and pathology report
Medical records can get that as soon as GI releases it
 
Will do! I've never requested copies of the GI's notes but, I've been waiting for S to have his scopes done and am now going to ask medical records for all past notes/summaries (thought I might as well wait and get all the info at once).

Also excited that I saw our hospital is starting a trial allowing a limited number of patients to access their records online! :D Not sure if patients have already been selected or if trial has begun but, even if so, access will soon be coming! :)
 
Tesscorm said:
Also excited that I saw our hospital is starting a trial allowing a limited number of patients to access their records online! :D Not sure if patients have already been selected or if trial has begun but, even if so, access will soon be coming! :)
Click to expand...

Haha...I was told our hospital was going to mychart over a year ago. They tell me GI is the last department and that is the cause of the delay. Not sure how they are going to do that as O's file is Literally 6 inches thick. I am sure they are only going to put certain things online but I still can't imagine there are a lot of frivolous notes in that file.
 
Thanks, CIC, for bursting my online access bubble! :lol: But, yeah, I kinda knew using the word 'soon' was optimistic. :) This stuff never happens 'soon'!
 
Our online access (mychart) only has test results and medication lists no doctor notes. So I still have to wait to talk to doctor most times
 
We have two portals one for the adult hospital through ped and one for kiddie hospital for GI .
Once they are in place some only put in lastest test results after the portal was open .
Others only bloodwork from beginning but no notes on either
Adukt one has copies of pathology reports xrays etc... But no notes
Kiddie has just bloodtests and a General your kid has this file but no notes
 
Glad to hear about the scope! Our mychart also only shows test results, and if they aren't done at the hospital, it's a scanned copy that is difficult to decipher-I have to ask the m to mail it to me, along with scripts, because digital scripts are great until you go to pick up a med after office hours and it was never ordered...:)
 
Oh Tess, what a brilliant update! :ybiggrin: I am so happy for you and your lad and I hope with all my heart the biopsies show the same fab result. :ghug:

Dusty. xxx
 
Thanks all!

It is a relief to hear the words 'all good'! I had no real reason to expect bad news but, as I mentioned, there's always that little fear that the doctor will come out and say 'well, I wasn't expecting to find xxx' :eek:...

I know visual isn't 100% but, as S's inflammation has always been worse in his TI, I'm hoping the visual improvement will extend to microscopic too! :D

Going to wait a couple of weeks after scope to call for results as I think biopsy results take approx 10 days (unless I'm confusing that with another test??).
 
Finally have copy of scope results... drum roll please...

"He has had complete mucosal healing..." "no active disease whatsoever" :dusty: :dance: :dusty:

They did note some scarring but no luminal narrowing... I'm okay with this. ;)

Think it was Jacqui who recently said this... and I share her feelings!... You guys have been awesome! I feel like I've finally finished a scary chapter and you guys were there pulling me through the worst of it! I know the book won't be done till there's a cure but, for now, I can really say 'he's good!" with no but, except when, sometimes...!

I pray everyone gets to this point... sooner or later, but sooner would be better!! I haven't posted as much lately... a bit busy, a bit because there are so many great members here, I sometimes don't have anything else to add... but, just know I am around and will post whenever I can (or can add anything of value ;)).

For new members, just know joining the forum was the best thing you could have done! You will learn sooooo much and will find lots of support! :)

Thanks again!! :)
 
Thanks all :D

Carol, yes, S has been on remicade for 2 years now (can't believe it's been that long... :eek:).
 
Oh Tess, this is just the best! I am SO happy for you and your lad! :dusty::dusty::dusty:

:mademyday:

Dusty. xxx
 
Question re high blood pressure...

Aside from a remicade allergic reaction during infusion, does anyone know of any connection between crohns or remicade and high blood pressure?

It seems S now has high blood pressure??? His new dentist mentioned it at a visit in May but I didn't think anything of it as he'd been under stress at that time and just being at a dentist can cause stress. But, then nurse mentioned it at Saturday's infusion and said it had been the same at May infusion.

Before infusion has started (so not an 'immediate' allergic reaction), his blood pressure has been approx. 140-145 over 85-95. During the infusion, they take his BP another four times and by the last test, it has dropped to 125-129 over 82-87. Nurse said people are often nervous before needle so this is not uncommon. I would have accepted this but S is not nervous about needles and goes to his infusions planning to sleep and relax. Plus, even the last reading at 125-129 over 82-87 is still leaning towards a higher level.

I don't know what the reading was at the dentist.

Yesterday, I decided to test it at my parents' (they have a monitor at home) and it was 135 over 87. The only stress would have been the worry that I was testing it because it was high last time. Is that enough to push it to 135 from a normal level of 120?

S is in good shape - recent scope showed all was good crohns-wise, he plays hockey 2-3 times per week, he's gained a few pounds but still at a healthy weight (180 lbs, 5'11")... but, due to busy schedules lately, his diet has been horrible over the last month or so (LOTS of fast food, frozen pizza, cold cuts...) - could his diet be affecting his BP this quickly?

Because his job is still so new, he's really hesitant to take time off work to see his doctor - I'm not sure how worried I should be about this?? I've told him he's got to change his diet right away but should I be worried about his hockey? I know exercise is good for BP but sometimes he plays two games in one night - could that be a problem with high BP?

Anyone have any experiences with high BP? Or any thoughts??
 
No -see a nephrologist
24 hour urinalysis
Plus quick urine dip
And bun/creatine levels( blood)
Possible ultrasound kidneys as well

First signs of kidney disease or damage is high blood pressure
Crohns can cause issues with kidneys

DS has multiple cysts in both kidneys
We were told of his blood pressure is up they start to get really concerned
 
When I get my blood pressure checked they say the bottom number is most important. So long as it's under 100 then they don't bother really. Not sure if that's right or not
 
Thanks!

I'll send an email to his GI... S is going NOT going to be happy. :(

We're still trying to figure out what's going on with that invisible rash/irritation. It's no better and it's been almost 6 weeks. We've tried so many lotions, creams, baby powder but nothing helps. I wonder if it's connected somehow?? Area of sensation/rash (I don't know what to call it since it's not really a rash??) hasn't grown or gotten smaller but, while the sensation lessens sometimes, it's still fairly constant.

S gets so frustrated with the dr apptmts. :( Especially given that he has a new job. So hard as he's caught between rock and hard place - he wants to get it treated (now BP too) but hates the thought of starting to ask for time off already. And I feel like I'm trying to balance on a tightrope... Ughh...

Thanks for the info!
 
I think they used to care more about the lower (diastolic) number but now they care about the upper (systolic) number as well.
For years, doctors focused primarily on diastolic blood pressure. The theory was that the body could tolerate occasional increases in systolic blood pressure, but consistently high diastolic pressure could lead to health problems. However, doctors now know that high systolic pressure is as important as high diastolic pressure — and even more important in people older than age 50.

The recommended goal for systolic pressure for younger people is less than 140 mm Hg.
Click to expand...
http://www.mayoclinic.org/diseases-...sure/expert-answers/hypertension/faq-20058527

I believe that a systolic bp 120-139 and diastolic bp 80-90 are considered prehypertension or borderline hypertension.

Letting the doctor know and knowing renal function (BUN/CR) seem reasonable.
 
Ditto what MLP/ Mr. Chicken said. I joined a gym that checked my blood pressure which was high. Went to the doc & just did urine test. He thinks I might have a cyst. Me...I don't have crohns... at least not yet. I have no idea what caused it if that's what it is, but it's thanks to Good Life I even checked it. Just to play it safe Stephen should too. I hope its nothing and just plays itself out. Stress can't be helping him!
 
Thanks.

I don't think stress is the cause of his recent BP levels but, until recently, I didn't realize how much his health actually worries S. :( Because he rarely talked about crohns (or any other minor health issue), I hadn't appreciated that having been diagnosed with crohns, perhaps, also took away his own safety bubble of 'it can't happen to me'. Worries of a symptom (not even related to crohns) has left him almost overwhelmed on a couple of occasions. His reaction/worry totally came out of the blue to hubby and I. Another fine line to balance... have him take his health seriously without becoming overwhelmed by every symptom. :(
 
No idea about blood pressure (my girls tend to have low BP) but wanted to send hugs. Your poor boy - it's hard balancing things :ghug:.
 
Any family history of high blood pressure?

Agree that it needs to be checked out. Are there any after hours clinics available?
 
Only family history would be my parents but the high BP only appeared when they were in their 60s. Hubby normal and I have always had low blood pressure...

S's recent BP levels:

May 12: 146/95, 128/72, 123/63, 121/62, 120/63
June 20: 140/82, 129/83, 131/78, 132/88, 129/87

Now that I have his numbers in front of me, it looks like they have moved upwards (even though, within each infusion, the levels moved down from beginning to end of infusion).

Have sent email to GI... waiting...
 
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You need to get the kidneys checked. My middle daughter has blood pressure check once a year due a kidney infection when she was 2 year old. She has a possible scar on one kidney.

They don't why kidney damage causes high blood pressure, just that it does.
 
Hi Tess, just as a possibility, whenever my husband gets even a slight bug, or if he takes antihistamines, his blood pressure goes up. Is he by any chance taking any allergy meds? I know N had borderline high blood pressure for about 6 months to a year. Then it came down. Let us know what the doc says. I know what you mean about them worrying so much more than they let on, and feeling annoyed and overwhelmed with doctors appointments and other limitations.......it does take a big toll. Warm thoughts for you both.
 
awmom - no allergy or other meds that I can blame. Did you ever find out what caused N's BP to rise? Or come down?
 
No, no idea what caused it. I brought it up with the GI a couple of times and he just said he was not concerned but they would watch. But I was concerned!!!! Maybe they did blood-work but I don't remember. I hope you get to the bottom of this soon.
 
If I've learned anything from this disease, it's that everything is connected. I agree that there's no bigger frustration than you being more concerned than the docs :)

Kidney function tests (BUN/Creatinine) should immediately tell you if there's a problem - they are usually a standard part of a chem 25/metabolic panel, so if he has a recent one, that should give you some insight. If BUN/Creatinine are elevated, you can look @ the kidneys. Kidneys FX is directly connected to heart FX, because kidneys have to clear everything the heart pumps, so when one is not working/working too hard, the other compensates accordingly.

A couple subjective notes:

My son normally has low-ish blood pressure, but his systolic # was elevated (not much, just to 128) in the last office visit. He is in a flare, and his body is probably under stress, he also is underweight and doesn't eat, so maybe his blood volume is low and his heart needs to work harder to compensate?

Then there's salt - that's just a direct relationship to blood volume - salt retains water, then the heart has to work harder to efficiently process the volume. You could try to watch that, but IDK if that's realistic, and young people are usually very good at balancing that. It's us old people that have problems because our bodies are not as in tune.

Another factor could simply be your son's age. Teenage boys and young men have blood pressure elevations during periods of rapid growth. Potentially, if he is in "healing/growing" mode, that could be a factor. In a big growth spurt blood pressure can go crazy.

Anyway, my 2 cents. Look at the last BUN/Creatinine or ask them to draw a panel next time you go in. That way, you can rule out kidney issues and you're at least not climbing the walls over nothing.

GOOD LUCK AND HUGS.
 
Unfortunately, the latest labs I have are from Dec. 2014. I should've asked for more recent copies when I sent email to GI. :ybatty: December creatinine and eGFR levels were normal (I don't see BUN or urea on tests).

Every time I slack off on getting the most recent results, I regret it! But I will ask for the May results when I hear back from GI.

Thanks!
 
Tess,
I have to Gree with the others. In someone his age this needs to be checked out. while waiting for an appt please tell him to avoid caffeine especially energy drinks or anything that boosts your energy like 5 hour energy. I know teens sometimes use these things. They can cause a rise your blood pressure and if his is already elevated it can cause some serious consequences.
 
Thanks Kim!!! I hadn't thought of that! I don't think S drinks any energy drinks but I will mention it to him right away (before his hockey game tonight)!

Still haven't heard back from GI and won't tomorrow (clinic closed). :( S's at-work training period ends tomorrow, so he wants to wait until next week to set up apptmt with GP (so that he, at least, knows who his supervisor is! :() But, in the meantime, he wants to go to walk-in clinic on Saturday about that skin irritation (I'll be asking about BP too).

S has been doing some research on his own re that skin irritation - he thinks it's related to nerves. From what he's read (and he sent me some links), it does seem to describe what he has - burning, tingling but nothing visible.

Anyone think these could be related? Could an kidney issue affect the nerves in your groin? I know the GP or GI is the one who can answer but just thinking..., while I'm waiting... :(
 
Tess can you describe the skin issues again? I somehow missed it.
Tingling and burning does certainly sound nerve related. Has his B12 been checked recently? Did he get injured?

Has he by any chance taken a lot of NSAIDs? Advil or Motrin for example? I remember he was quite an athlete. My husband has been on almost daily NSAIDs for years and now has kidney issues and hypertension. Though S would be very young for that issue...
 
Any family history of adpkd ?
He would be the right age for it too show up
But when was his last mre ...?
That would have noted any issues with kidneys .
 
Because the kidneys stop filtering blood in patients with kidney disease, waste products begin to accumulate in the blood. This can lead to fatigue, often accompanied by a feeling of general ill health. Headaches are another common symptom, as is dry skin and a generalized itching sensation throughout the body, known as pruritis. Patients with kidney disease may also experience nausea, vomiting, a loss of appetite and dramatic, unintentional weight loss leading to tissue wasting.
Click to expand...

From
http://www.livestrong.com/article/168915-kidney-disease-symptoms-pains/#page=2

So yes itchy tingling skin can be from kidneys
 
The skin irritation started when he was in Portugal, end of April/beginning of May. The area is at the very top of his leg/groin (ie bikini line area). He started to notice the sensation a couple of days before he returned. Initially, he thought a heat rash. When it didn't go away, he began to think it was molloscum/folliculitis again even though he couldn't see anything this time. Went to his GP but GP couldn't see anything and suggested some sort of heat rash (no tests run). S was misdiagnosed last year with herpes, when it was actually molloscum/folliculitis, so when the sensation didn't go away, he began to worry that the misdiagnosis had actually been correct... went to an STD clinic... again, nothing to be seen, tests done, all clear. Another week or two go by, sensation not lessening, and his illogical herpes panic was really stressing him... hubby goes with him to ER dept of GI's hospital to have it looked at again and alleviate his herpes fears. Again, nothing to be seen, no tests run, dr tells him just some sort of heat rash!

It's now been six weeks... he's spoken with our pharmacist, tried all kinds of creams, talc, anti-chafe gel, etc. and nothing's helped. Says it 'sort of' burns and tingles and it feels like, if you were to look, you'd see raw skin but there is no raw skin, no redness, etc. Worse with movement but can still feel it when he's just sitting/lying. Sometimes worse in morning, sometimes at end of day. Area of sensation has not grown nor shrunk. Neither heat nor cold affect it and it doesn't hurt 'more' when you touch it. But, it's starting to drive him crazy! He said it never stops, may lessen at times but that it's a constant aggravation. Initially, I'd thought some derm issue but now, I am thinking more a nerve issue.

IDK...???

And no nsaids since dx... it actually may have been his use of advils because of hockey that triggered the crohns. :(
 
No family kidney issues. Last MRE was Aug 2013 (kidneys normal). Just read through your link and I haven't seen any of the other symptoms...
 
Sorry Tess no ideas. It does kind of sound like a nerve issue. What about seeing a neurologist?
Really hope you can figure out both issues. Sending hugs!
 

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