Fall update on C and me

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Clash

Clash

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Apr 26, 2012
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Ok so C seems to be doing fabulously, I've been freaking out a bit for a couple weeks because he seems to be looking thinner, so I've been on a "go weigh" binge every time I see him. So his sister came home for the weekend and she had on boots(that every young chic seems to have to have around here), she is 5'7 flat-footed not sure if the boots add much height but C was in his socks and he was taller than her!!! Yay! So excited it is visible, comparable growth, he is now taller than his sister! Never thought I would be able to say that!

I go in for an endoscopy tomorrow. There is a definite pattern, mostly after my last meal of the day but sometimes after lunch, this pressure builds in my breadbasket and I feel the need to burp but can't. If I don't burb then it will eventually lead to tachycardia. When I am experiencing this I can press right below my sternum and it is so tender feeling. After the endoscopy I have a cardio scheduled but it will be a couple weeks for the guy I want. The GP feels this is all GI related. We will see...oh and if I am able to get some of the air up then the pressure and racing heart goes away. Also even though I take a nexium before I get out of bed in the morning, I still have acid come up in my mouth at bed time.

Now for something entirely new...my Dad has been losing weight for months, since August he has lost 17 lbs. He had a colonoscopy and endoscopy done(just preventative screening) in August and the follow-up was last week. The GI(same GI that diagnosed C) was concerned about Dad's weight loss and even though the GP had done a CT scan that came back normal the GI wanted a SBFT(done today-took 3 hours). So I mentioned to the nurse that they were caring for my Dad as well as me she asked who my Dad was. I told her and she said, now is this C's grandfather or step-grandfather, I said my Dad, his real grandfather. She thought that was very interesting, and it turns out from talking to my Mom that for the last 20 years my Dad has been living on immodium for D!! We really don't know what is going on with my Dad and have had numerous tests run,(colonoscopy and endoscopy were normal, internal hemmies and Mom said something at the TI but doc thought due to prep, we'll see if he thinks different now that he knows the connection to C.
 
Goodness Clash! Quite a juggling act.

I am so excited C is growing. That is just the best darned news ever! They always say up then out so hopefully he will start filling out that frame!

Good luck tomorrow keep us posted and please keep us posted on dad. Yikes! Immodium for THAT long?
 
I know....he grew....he grew and I could tell, I was just all dance around the room excited, which didn't impress either child too much!

Yeah, my Mom told the nurse he used to stockpile immodium. Ummm...sad part of this is I knew this and I think at one time he use to do the same with the px lomotil, because I think that was the first time I heard of it, he called it his "no s$*% pills". Why didn't any of this come to mind when I was discovering the world of CD with Chase. Although, I really don't know what is going on with Dad. The plates of food he fixes now are small in comparison to how he has always eaten, but he will eat desserts 6 times a day, and keeps a glass of water in his hand at all times, I mean it is like permanently attached. I hope we get some answers soon.

I will keep you guys updated on the endoscopy but seeing as every other test I have comes back normal I assume this one will too. The GI nurse mentioned putting me on nexium twice a day since I was still experiencing the acid/bile coming up into my mouth but she said they would be able to tell more after the test.
 
So encouraging that your son has grown so much!! IT IS POSSIBLE!!!! Yay!! I could imagine you dancing around...love it!

Very interesting about your dad. Isn't it wierd how some people can just 'live with it' and children, well it takes over everything!!

Please do keep us updated on you. I've wondered what the stress can do to us. Acid reflux for sure. I may have missed another thread. I hope you are ok. Do you think your condition is related to your dad...your son?
 
Thanks Brian'sMom! I was excited about his growth. It is still not solid ground for me, at the least little symptom, I'll be worrying about everything but for now, it makes me wanna dance!

I went to the GI that dx'ed C(not C's GI now since we switched to Ped GI after dx) before C went due to gastro issues and they did endoscopy/colonoscopy and could only find H. pylori. After treating it, the symptoms most disturbing did go away. Then I started having severe, double over pain in my breadbasket that the GP thought was Gall bladder probs, had an ultrasound there were no stones and then a HIDA scan that said I was low normal on percentage output but they decided that was the problem and removed it, biopsied all was good with it and it looked normal except that it was abnormally long(no idea what that meant nor did surgeon). The bend over double pains remain and come maybe every 3 or so months and now, I have what I described above.

This GI was convinced a year ago it was CD since C had it but he did a colonoscopy and still normal. Now I think he wants to fob this epi-gastric junk off on IBS but I'm not so sure and since I have a bm about once a week I'm not going to dare take levsin as he suggested at the last appt.

The GP feels there is something GI related going on and called the GI and said he wanted another endoscopy so that is where we stand.

From the nurse's convo when I told her they were seeing my Dad she seemed more intrigued about Dad's issues being related to C then she did relating the fact that there may a connection to me. So who knows. The double over pain was and is horrible but honestly nothing compares from this pressure and inability to burp combined with the tachycardia, it really bothers me.
 
I'm dancing around the room for him as well! That's fabulous.
Hope you get answers for both you and your dad quickly
 
I know Jmrogers4, I think growth and weight gain have been both our boys issues. I'm hoping the gain in height has thinned him out again and he will gain again but that part, weight gain, is still slow going and he is eating us out of house and home. I just don't understand.
 
Well if he is eating you out of house and home, I'm sure the weight will come with the height. He gives me hope that Jack will get there as well.
 
Woohoo on the height!!! :banana: So glad to hear it! :D

And good luck to you!! I do hope they have an answer for you. So frustrating when symptoms are there but no diagnosis, no direction...

And, yes, as was said above... crazy how things can happen gradually and you just 'live with it' and it seems normal. Still upsets me that before S was diagnosed, he had backaches (did start with an injury) and when the pain kept returning (but he did keep playing hockey, which we assumed caused the pain to reoccur), his GP said to give him advils before every practice/game to keep inflammation at bay... there were probably weeks when he'd tak 10 advils that week (btwn practices and games for two teams plus the odd time he'd actually take the advil for pain). How I ever thought this was 'okay' is now beyond me!!! :ybatty: :( And, now I'll always wonder if it was the advil use that triggered the crohns??? (his GI said 'possibly' but also said the back pain could have been an early symptom of the crohns - so pre-advil use). Anyway, blah, blah, blah :ybatty:... back to you Clash!!

Good luck!!! I hope you the endoscopy gives you an answer! :ghug:
 
I'm so glad C is growing!!
My dad (Devynn's grandpa) lived with diarrheah for years and years. We just always figured it was his meds. He was on a lot of meds for asthma. I did mention it to her dr's when we were first doing our family history.
 
I keep saying, we all need to talk about our poop more! I swear over half my family has Celiac, but will they go in for a simple blood test? Noooooo!

My dad still stockpiles Immodium too.

So glad to hear that he's growing! Woohoo!
 
Taller than his sister - that is AWESOME!! :) Is he thrilled to be looking "down" at his sister (every inch counts!).

Hope you get some answers soon. I appreciate you sharing what you are going through. I have been having stomach issues on and off for a while (and I can remember a time when my Mum lived on Maalox!) but do I go to the doctor? NO. (Mehita, maybe I'm related to your family members!! laughs...) I don't think I could handle another thing to worry about... maybe once the doctors decided the next course of action for my little guy (surgery or not regarding his arm) I will think about it (eek...)

Until then - Yeah for C!!
 
Congrats on your son's growth! It's so encouraging to see them gain even a little in stature.

There are a ton of bowel issues on my side of the family, although no one other than my son has been dx'd with CD. My father used to live on a cocktail of Imodium, Divol, and Tums. There's no doubt in my mind that there's a connection somehow with my son's CD.
 
Glad C is growing! What a relief, must be nice for him. Good luck for your endoscopy! Hope they get answers about your dad.
 
Everything was normal, as with every other test. Everything went well. My father's SBFT came back normal but he is still losing weight. We really have no idea where to turn for further testing with him.
 
Glad all went well but sorry you didn't get answers (for you or your father). Did the doctors have any suggestions as to what should be done next?
 
I don't think there are any other GI tests I'm going to do. For my Dad, we aren't sure where to go from where we are at. He has an internist who ran all kinds of blood work then sent him for full body CT, then to cardiologist for stress test and something else, then GI who has done endoscopy/colonoscopy and then when he saw the amount of weight he had lost at follow-up appt he scheduled the SBFT. Also, urology where they did a scope up to bladder and neurologist where he had an MRI. All of these tests are normal yet he still loses weight.

Thanks for the support. My issues may be stress, I have a follow up with GP then I guess cardiology.
 
have you tried a ph probe or swallowing study?
it could be something when food goes down or up kwim.
might be worth asking
 
No I haven't had either of those tests mentioned to me. When I was talking to the GI nurse about scheduling the endoscopy, she asked had I had my allergies checked. I have had them checked and twice I had the scope thingy stuck down my nose, last year and 3 years ago. She asked if the ENT mentioned my vocal cords had been swollen or inflamed because they get a lot of patients from the ENT after the scope shows damage by acid reflux but the ENT said mine was normal.

I'm assuming they use air to help the endoscope go down, because today I have had the pressure and tightness in my chest all day and is relieved when I am able to burp, which for some reason I can't just make happen. I mean seriously how is it that I am unable to make my self burp? I've tried all the tricks my teenage son has shown me to no avail which makes the tightness and pressure worse. ugghhh.
 
I've thought about that too. I think it is going to take me transferring GI's, this one feels nothing serious is wrong. I have a follow up with my GP about how I am doing and I am going to lay it out for him that I am not satisfied with the answers and am going to consult another GI, see if he recommends anyone.

Oddly, while in recovery the air from the endoscopy created the really bad chest pain(actually the bread basket area) and the nurse gave me infant liquid gas relief drops and it took the pain and pressure right away. But I've chewed gas-x before hoping for that response and didn't get it. I would think they were the same substance, just one is liquid.
 
Clash,
Glad to hear your son is doing well but am worried about you. Taking liquid mylicon which is the drops they gave you in the hospital and are over the counter may be something to try. Liquid is better absorbed and works faster then pills. About your Dad, ask them about leaky gut syndrome. Might be something to look into.
 
Thanks, my husband is on roll on through mode right now. Since we met our out of pocket he said anything they think might be going on, we should have the test for it. HA!

My Dad I'm really worried about, it is so much weight. I think part of the problem is that my Dad saw the same GP for 30 years back in there hometown so these are new docs, they never saw my father at a healthy(maybe a little heavy on the southern cuisine) 204lbs, he is now 158, he is 6"1'. So still technically not underweight but visually it is staggering. And the fact that he isn't trying to lose weight is what most worries us. I'll ask Mom if leaky gut had been mentioned.
 
Leaky Gut is kind of a new thing so it may not be on their radar to think about. Have they talked about giving him any kind of supplements like boost?
 
His internist suggested boost/ensure and whole milk with chocolate syrup. He was already drinking boost, we have added more and now he is doing the chocolate milk too. But no results in that last month. And my Mom makes, well you know, southern meals. I know it is partly appetite because the plates he fixes are smaller, then he doesn't finish them but he will eat like 8 desserts a day. Ice cream with cookies crumbled in them, brownies and icecream, pie, more ice cream. So he has to be consuming high calories, they are just not sticking or something.
 
Oh and another thing, he constantly has a glass of ice water in his hand and refilling it, sometimes unsweetened tea but mostly water, which has him going to the restroom 30x or more a day. I mean a trip to the grocery store requires a pee before you leave, a pee on the way and then two to three times while your in the store...my Mom is at her wits end.
 
Hmmm sounds like an absorption issue. It is odd we are going through something similar with my Father. He too has had stomach issues for years. Then this past year he was diagnosed with an autoimmune disorder and he lost a ton of weight. We have been trying and trying to get him to gain weight. He won't drink a supplement. It is so rough when our parents get a little older. I worry about him constantly. Another thing to ask the doctor is there are some medications to help increase appetite. That might be something to consider.
 
Would a doc consider putting someone his age on something like periactin or megace? I think I am going to have my Mom ask. thanks for that Kimmiedwife
 
I hope they find out what is happening with you. Up above in one of your posts you mentioned stress. Several years back stress and anxiety really took a toll on me. I felt like I had a lump in my throat...I thought it was acid reflux. I also felt like I was having a heart attack at times. I had trouble sleeping and my heart felt like it was racing...yet when i counted the beats...it was normal. I went to a few doctors and I had all kinds of tests done. They kept telling me it was anxiety. It made me mad at the time. After 2 doctors told me this, I tackled the anxiety... in my case, that is what it was. I'm surely not saying that is what is going on with you...I just remember thinking, "I'm going to have a heart attack and all these doctors think nothing is wrong".
 
Brian'sMom, I know exactly what you are saying. I was put on paxil a couple of year ago and when I went to the GP when all this started he thought it may be anxiety too so I greet to see a psych and get their opinion.

I've been going for 3 months now, she says she can't say I have a diagnosable anxiety disorder, she thinks since my symptoms started before Chase was even having symptoms that something is going on that I should explore what that is with specialists. She also wanted me off paxil and on celexa, though she thinks if they resolve my health issues the anxiousness she sees will probably dissipate.

I don't know what to think, I take the med but it makes me feel zombified and the symptoms continue. It is so frustrating!
 
I'm sure this has been tested but how about diabetes? I know it can cause some weight loss and what you mentioned about your dad drinking water so often...
 
Yeah, apparently that tested out fine as well. We are just at a loss for what to do next. Mom's sister wants a PET scan but I'm not sure how that works I thought that was used after they determined the location of something they wanted a better look at.

It really bothers me that since his full body CT scan was normal then all the doctors(excepting the GI) were nonplussed by the weight loss. And now since the SBFT was normal the GI is on that boat too.
 
Clash, Have they checked your thyroid? I'm sure they have. I hope they find what is causing you and your dad trouble. Keep searching!!
 
Yes to both. They wanted to put my Dad on megace but he is stubborn and hates taking meds so refuses to take it.
 
Brian'sMom they checked my tsh levels at the ER during one of the tachycardia spells and they were normal. When I went to the GP for follow he asked about them to and I told him normal. He then said when he had ran them several months back they were borderline hyperthyroidism. So he was going to get copies of the ones from the hospital. I guess we will discuss it at this next consult but he has seen me since saying he was going to look over the lab and didn't mention anything so I guess I'll need to push him on it.
 
Kimmiedwife, I'm going to have mom mention the megace at the next appt for my Dad, thanks.
 
Wow! So good to hear that C is doing fab! :dusty::dusty::dusty:

:( Sorry to hear that you are any closer to answers for yourself Clash. :hug:

So sorry to hear about your dad not getting clearer answers either hun. :(

I hope you both get some direction and relief very soon. I see they cleared your dad of diabetes so I assume it was diabetes mellitus, do you know if they ever looked into diabetes insipidus? A contradictory term as it isn’t really diabetes…it is a long bow but with his weight loss, excessive thirst (particularly when you mentioned ice water) and excessive urination it may be worth a look at.

I imagine he voids alright and the frequent toilet stops isn’t due a prostate problem?

And one last thing…just gotta say it…:lol:…bloody yanks!…Fall update…my first thought was that you and C had literally had a fall! :yfaint:

Dusty. xxx
 
Dusty I'll have Mom mention the diabetes insipidus.

The did some tests at the urologist and said he was voiding his urine well but that he had enlarged prostate but that the enlarged prostate wasn't concerning weight loss or number of trips to the bathroom.

I had another spell yesterday ended up at ER, tachycardia. I told the ER doc my long story, endoscopy normal biopsies done waiting on results. She came back said she looked at my results, it said chronic inflammation in stomach and no h pylori. I asked what that means and she said it meant I had chronic gastritis but she said there were no ulcers or lesions visable. I've been on Nexium for 30 days now, 26 on day of scope, so how long would it take it to clear up.chronic gastritis.

It looks like chronic gastritis can be caused by h pylori, some type of bile dumping(i don't have a gall bladder), autoimmune gastritis and some GI disease, also the stomach cancer bit I figure that would show and doctor would've mentioned further testing.

The only way I could figure chronic gastritis could cause tachycardia is due to pernicious anemia and B-12 deficiency, but it seems if I had that then its effects would be visible with scope and blood work would show anemia, is this correct?
 
Do you have blood test results for ferritin, b12 and folate?

There is a problem with the range for b12.
 
I'll have to check with GP and let him get them from the ER, they just told me everything was normal. If those haven't been tested I will ask the GP. I just don't know if he will test ferritin if HGB was normal nor do I think he will want to test for size of red blood cells for pernicious anemia if HGB was normal but I'm going to push for it.
 
Sorry for the late catch up Clash…

A standard B12 may not necessarily pick up an issue. B12 is stored for up to 5 years but that is not to say depletion isn’t taking place which is why a MMA (methylmalonic acid) test is more accurate measure, it measures the stores not the serum amount.

Also those in pernicious anaemia circles feel that the current normal reference ranges for B12 are set too low and the minimum acceptable level should be raised to 500.

Dusty. xxx
 
Clash

I had colonscopy/Gastroscopy today. I have similar results to you. Mild chronic gastritis.

A single dose of tinidarole was mentioned as a possible treatment depending on results of the biopsies.
 
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http://www.mdguidelines.com/gastritis


Physical exam made me think of you.

Physical exam: The exam results are most often normal. Rarely, there is abdominal tenderness, pale skin, rapid heartbeat (tachycardia), shortness of breath (dyspnea), or low blood pressure (hypotension). The individual may have foul-smelling breath (halitosis).
 
Hi Clash and Catherine,

I don't know IF this will help. Grace's second opinion told me that she had chronic gastritis also. We talk about if this could be Crohn's in the stomach. The GI said it very well could be because the gastritis is patchy and defined.

I don't know enough about gastritis if the patchy is normal? It was the defined part and by the second scope it went deeper that the GI seemed concered about.

Hugs to both of you.
 
Thanks guys, I spoke with GI last week, he said visually everything looked good. The chronic inflammation on biopsy was gastritis. He said I needed to remain on the PPIs, that the results were not rare or concerning. The gastritis was not atrophic, which would have shown up visually as cobblestoning. He offered, before getting biopsy results back, levsin(not sure why) but at follow up said to continue PPI and I could have carafate as well.

Went to GP yesterday, to follow up about endoscopy and because cardiologists I chose needs referral. He said he had the visual from endoscopy which sounded good but not biopsy, I filled him in and asked could the PPIs I had been on for almost 30 days at time of endoscopy affected visual and he said yes it could have. Keep him informed of symptoms. But from the report and my explanation of biopsy it didn't sound concerning. He didn't think I needed vitamin panels and my iron levels looked good. He hopes to get me in with cardiologist this week. Fingers crossed. He did mention again that he thought the tachycardia could be related to the GI issue bit also now thinks we should rule out heart issues.
 
Hi Clash, sorry for crashing your thread.

Mine is mild chronic atrophic gastritis. Awaiting further results. This not that uncommon either.
 
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So are they concerned about your B12 levels? The GP I see in not one to do vitamin tests, it's like you are asking him to define a dance to cure your common cold.

He has said he doesn't find many people with vitamin deficiency(ahem, my son, your patient, was vitamin D deficient and anemic, though of course you wouldn't know that since you didn't check for vitamin deficiencies when we were trying to discern his diagnosis...btw it wasn't a virus like you said it was for 3 months.) He recommends women chew two tums a day for their calcium supplement.

I'm still waiting for the cardiologist appointment. When I went to the ER the first time with the tachycardia, chest tightness and inability to burp they said my potassium was low. Though they didn't think it was low enough to cause the tachycardia. They said it was a little low-whatever that means- wonder what could cause that. Ughhh...so ready to see the cardio.

Oh I have a gyno appointment tomorrow, I'm going to tell her about all of my symptoms as well and see if she sees a connection with anything gynecological. I have an endometrioma on my right ovary but have been told at different times I do and don't have endometriosis, they can't know for sure since they have never done a laproscopy. I had been considering a hysterectomy but up until two months ago the doc didn't think it was necessary. My periods are coming crazy 28 days-then 14 days- then 21 days with major cramping. All of my (tachycardia)attacks have occurred on the first day or day before the start of my periods. So the gyno told me two months ago since it was probably endometriosis(funny she said it wasn't at my annual) that I could either go on bc, have some type of uterine ablation, or have all but ovaries removed. Also 6 months ago I had a harmone panel, all looked great except slight high testosterone, she wasn't worried. I'm going to ask about hormone levels and tachycardia, endo and tachycardia, anything I can think of because these attacks are driving me crazy and freaking me out a bit.

Of course with an upcoming cardiologist appt she's not going to schedule surgery.
 
Clash

You need to find out what type of chronic gastritis you have.

There are two types. One type mainly causes the problems with B12(autoimmune) The other is mainly caused by helicobacter which can be treated. You also what a plan on how they are going to cure your gastritis. Please don't leave this. I am currently kicking myself that I didn't push harder for a proper dx of the cause of my heartburn (20 year history).

Yes they should be interest in your B12 levels you have chronic gastritis.

Sorry for venting on your thread.
 
The GI said that I tested negative by biopsy for H. pylori, he mentioned that it could be caused by bile reflux but it that possible if you don't have a gall bladder? He did say that it wasn't atrophic gastritis. I assume that is determined visually by the scope and visually my scope was normal but I do wonder if being on nexium for the 30 days before the scope may have cleared things up?

He didn't mention autoimmune gastritis, I'll have to call him back and ask about that.
 
I found info about bile reflux being a possibility for causing chronic gastritis if you have had your gall bladder removed:

People who have had their gallbladders removed have significantly more bile reflux than do people who haven't had this surgery.
Click to expand...

source

Bile gastritis is a stomach inflammation that starts when bile produced by the liver leaks into the stomach. Over time, the acidic fluid erodes the stomach lining and can even reach the esophagus, leading to heartburn. Bile gastritis is rare, but people who have had their gallbladder removed or have had stomach or weight-loss surgery are at risk for it.
Click to expand...

source

I hope you get all your results back and on treatment soon and vent all you want!
 
My understanding is that atrophic gastritis takes years to develop.

Types of gastritis

Chronic gastritis
Older people tend to suffer more frequently with chronic gastritis. Chronic gastritis involves the long-term inflammation of the mucosal lining of the stomach. This inflammatory condition of the upper digestive system can last for years. There are many possible causes, though in 90% of all patients who suffer with chronic gastritis the Helicobacter pylori bacteria is the primary culprit.


Under the larger category of chronic gastritis, there are several subtypes having different causes:

Type A gastritis has a large genetic component (i.e. it runs in families) and primarily affects the body and fundus of the stomach. It is also sometimes called auto-immune gastritis. In this type of gastritis, the parietal cells which are responsible for the production of acid are attacked, which can in advanced cases lead to complete deterioration of the stomach lining. A particular form of anaemia can also result due to an interruption in the absorption of vitamin B12.


Type B gastritis accounts for 80% of all gastritis cases. It is primarily caused by pathogens like bacteria, viruses or alcohol. In 90% of cases of type B gastritis, there is one primary cause: the Helicobacter pylori bacteria. Only rarely, mostly in people with an otherwise compromised immune system, is there a different cause.

Type C gastritis accounts for about 10% of all gastritis cases. The cause is an internal irritation, for example bile from the gall bladder may enter the stomach following an operation to partially resect the stomach or a hiatal hernia is surgically repaired. In addition, the effects of certain chemicals can cause this type of gastritis, for example medications which irritate the stomach, food poisoning, excessive alcohol or smoking. Generally this type of gastritis can be quickly resolved once one determines and eliminates the cause.

Research has revealed that there are two additional types of gastritis. Type D includes several special forms of gastritis such as Crohn's disease (regional enteritis) or collagen gastritis. Type R gastritis is normally caused by heartburn which through complications can lead to Barrett's oesophagus.
 
That was my understanding of the different types as well. Four years ago was having severe issues, that including massive amounts of gas, stomach pain that started on my lower right side and went straight through to my back. I had an endoscopy and colonoscopy which was normal except for gastritis and a positive biopsy for h.pylori. I took the meds for the h. pylori and all of the symptoms subsided. This time is much different, I have no pain except when I am unable to burb and it is in my breadbasket or right below my sternum. The endoscopy showed that visually everything looked normal, no inflammation but biopsy showed chronic inflammation.

As far as risk factors:
I had my gall bladder removed due to what they said was low out put, although it wasn't and the pains I was having continued after surgery.(GI wasn't involved in this)

I do smoke, and it has increased since C's dx a nasty habit I would love to leave behind.

Up until about 6 weeks ago, I drank up to 6-8 cups of coffee a week, made excessively strong.

Caffeine intake with coffee and sodas was fairly high.

I have since stopped all forms of coffee and caffeine and I am avoiding any foods known to be acidic.

The GI didn't seem concerned about the biopsy report and said it was quite common. But I will call him and ask if he knows the type.
 

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