22 Year Old Daughter just Diagnosed

[AmaliesMom]

Hi All,

I'm not sure if I'm in the right place. I know it's for parents of kids with IBD but although my daughter is 22 she still feels like a kid to me.

Amalie was diagnosed with Crohns over the weekend and is currently in the hospital. Because she is away at College, I'm only getting to go see her tomorrow. I booked the earliest flight I could and am leaving in the morning. All I want to do is give her hug.

I suppose I am feeling a lot of guilt surrounding Amalie's diagnosis. For the past 2/3 years Amalie would say things like "Oh Mom, I'm not feeling well today." on a regular basis. So often in fact, that I put it down to her being a bit of hypochondriac. She also constantly said she was tired and I just told her to exercise more and stop complaining and she might feel better. Now, I know, that this was all the onset of Crohns and I feel horrible about it.

A couple of weeks ago, Amalie was home for a few days and she "wasn't feeling right" once again. I started telling her the usual things and then she burst into tears. She told me I didn't understand. She told me she went to the bathroom 8+ times a day and was too embarrassed to say it. She told me that when she said she was tired she meant it. She said there were days when she felt so tired that she physically had to force herself to get out of bed for classes, she would get home from classes, take a nap and then get up for a while before going to bed early.

I now felt that something was wrong so we went to her GP who made an appointment for her to see a GI specialist near college which would be more convenient for her. When she went to see this consultant on Thursday, she admitted her to hospital and organized a colonoscopy for Friday. After this Amalie was diagnosed.

Amalie rang me in tears. She is so embarrassed about her condition. I told her I would be there as soon as possible. She's expected to be kept in hospital til the weekend at least.

I don't know what to do. I know NOTHING about Crohns. I'm googling like hell but the results are so varied that I don't know what I'm supposed to believe. I'm also so so sad that I didn't take her seriously when she was telling me she wasn't feeling well. I put it down to being a lazy young adult.

Could somebody please fill me in on the main parts of Crohns? I want to have some insight before I go to the hospital tomorrow.

Also, how can I apologize to my beautiful, strong daughter for not taking her seriously.

Thanks in Advance,

Mary-Anne

 

[Clash]

So sorry your daughter has gotten this dx.

I think each of us as pasrents have felt guilt ove our children's illness. Honestly, during the teen years fatigue is a common complaint and why would anyone have something like Crohns disease on their radar. I do understand the guilt, I've been there but I'm sure you will be come her biggest supporter and advocate going forward and this forum is a great place to start.

Crohns is extremely individual and can varygreatly from person to person. It will be a steep learning curve with the disease and the treatments available to try and control it.

Some of the first questions that come to mind are asking:

Where is the disease located in her GI tract?

How are they classifying her illness, mild, moderate, severe, stricturing, fistulizing? These thinks can change and some one that has mild disease can become more severe but this will help you as you navigate the diagnosis.

What treatment plan are they suggesting and why? How long are they giving it to see improvement. If that treat plan is not effective what is plan B?

What tests have been administered and are there plans for more tests, will the results affect the treatment plan in any way.

There is probably loads more but most important is probably that hug you can't wait to give and she is probably eager to receive. You and her may feel frantic at the beginning of all this but it will pass and with the right treatment plan for her she should be feeling much better soon.

This is definitely a good place for info and I'm sure other parents will be by soon with their experiences. HUGS!

 

[Jmrogers4]

Welcome Mary-Anne
You have come to the right place. We have many mom's with older children away at college and such.
First take a deep breath, we have all done the should have, would have, could have guilt dance. Try and put it behind you and focus on today. My son had stomach aches for a year or more before diagnosis. He complained nearly every morning that his stomach hurt, we cut out dairy thinking it was a lactose issue, didn't help. The thing was, I never received a call from school, he never complained at school only in the morning at home.
His father has Crohn's so you would think I would have clued in but we were always chalking it up to something else, school, stress, etc (He was only 9-10). I think just about every parent here has felt "the guilt".
Couple of things. Tell her to get copies of all test results (I have a binder that I keep my sons in). This will help her keep track of patterns/trends. Know what her results are in a flare as well as when she is in remission. It also helps to remember or be able to go back and look. I was such a basket case when my son was diagnosed I don't know if I retained much of what was said after colonscopy and it helped to go back and look.
Most important thing now is getting inflammation under control. They will generally do this with prednisone in the US (although in most other countries will start with EEN exclusive enteral nutrition and has shown great success rates). They will also most likely talk about a maintence medicine some standard ones are Imuran, 6MP, methotrexate, Remicade, Humira.
Imuran and 6MP are sister drugs and work similarly in that they suppress the immune system. They can take a while to become theraputic anywhere from 3-6 months and are usually started along side either prednisone/EEN with the theory that by the time you are weened off Pred/EEN that the medicine will be working. Methotrexate falls somewhat within this same category and can be taken in a pill form or injection and is usually only done once a week where Imuran/6MP are taken daily orally.
Humira/Remicade are called biologics and are anti-TNF medicines. They are considered a stronger medicine then the immunomodulators and are either given by IV every 4-8 weeks (Remicade) or injections (Humira) generally every 2 weeks.
There are other non-traditional meds, LDN, Stelara and some try diets with varying degrees of success.
One Caveat when searching the web and even here on the forum, a lot of these are worst case or posting when they are having a lot of issues because when they are feeling well they are out enjoying life and the disease does not consume every aspect of it. I can tell you my husband was diagnosed over 20 years ago at 25 and my son 4 years ago at 10 and most days they do not give it more then a passing thought.
Best of luck to Amalie (love that name) and please keep us posted.

 

[Maya142]

Hi and welcome (sorry you had to find us)!
Plenty of us here have older kids with Crohn's but they're still our babies, so you're in the right place.

Please don't beat yourself up about not recognizing your daughter's illness, many of us have made similar mistakes.

My daughter is 17 and was diagnosed last year after months of stomach aches. She also has arthritis and we thought her swollen knee was a sports injury for years (as you can see I'm very familiar with the guilt!).

You've been given great advice but I wanted to add that my daughter see a therapist that works with kids with chronic illnesses and it has been very very helpful in learning to how to live with a chronic illness. She was very against going to see one but now says it was one of the best things her GI has done for her (her GI insisted).

In terms of being in college with a chronic illness (my older daughter has juvenile arthritis but not Crohn's and is in college), your daughter should definitely register with the Office of Disabilities so that she can have the accommodations she needs (stopping the clock during tests for when she needs to go to the bathroom, extensions on assignments if she's not feeling well, missing class for doctor's appointments if necessary etc.). It would also be helpful for her to have a GI near school since she'll be there most of the year.

It takes a while to find your new "normal" but it definitely will happen as the meds kick in and your daughter gets used to living with Crohn's. There's a support group on this site for Young Adults with Crohn's - talking to kids her age might help your daughter be less embarrassed and come to terms with her diagnosis.

Hang in there and good luck!

 

[Tesscorm]

First off, don't feel guilty!! When my son initially started showing symptoms, I had a million excuses for them... even when my own mother made comments about how my son looked, I brushed them off as just my mother being the ultimate worrier! You often look 'well' with crohns and as the symptoms come and go, it's easy to let things slide for a while. :ghug:

I also understand that feeling of not knowing 'anything' about this. I barely knew what crohns was when my son was diagnosed. Not sure if there's a 'primer' on the forum (but, might actually be a good idea!) but, here goes...

Crohns is ongoing inflammation anywhere in your intestinal system (from your mouth to anus), most common area is the Terminal Ileum (end of the small intestine). The inflammation can cause many symptoms, the most common would be diarrhea or constipation, bleeding, pain, cramping, nausea, vomitting, fever, fatigue plus more. But, not everyone experiences all of them!! A frustrating characteristic of crohns is that it is very individual and symptoms vary depending on where the inflammation is located and even when in the same location, will vary from person to person! The same goes for testing and treatment! :ymad: (But, you will learn your daughter's more common symptoms as well as what tests indicate active disease and which treatments work best.)

The inflammation needs to be treated as ongoing inflammation can eventually cause scar tissue which can only be treated by surgery. I'm sure the initial aim of her GI will be to eliminate the inflammation and get her into remission. This is usually accomplished using steroids (usually prednisone), or exclusive enteral nutrition (liquid only diet) and sometimes antibiotics (cipro or flagyl). Then your daughter will require maintenance medication (often started at the same time as they can take some time to become theraputic) - most likely an immunosuppressant or a biologic. The idea is that the steroids or EEN will induce remission and the maintenance meds will keep her there.

When inflammation (or scar tissue) is present, those areas are unable to absorb nutrients - this may be why she was fatigued (and another reason to get inflammation under control).

They will probably discuss bloodwork - CRP (C-Reactive Protein) and ESR (sedimentation rate) are inflammatory markers (rise when inflammation is present in the body), HGB (hemoglobin) is often low due to malabsorption. There are other results but, for my son, these always indicate disease activity. If you look in the forum Wiki (look on main page), you'll find links to info on Blood Tests as well as other tests.

Feel free to ask any other questions... I'm sure you'll have more as you try to learn more. :ghug:

And, no worries, you are certainly in the right place to get answers and support.

 

[theOcean]

I'm so sorry to hear about your doctor, and please don't feel guilty. It's not as though you knew there was something wrong with her, and it sounds like now that you do you're very willing to learn and help! So I'm sure you will make it up to her. :hug:

I also wanted to chime in because I'm 22 and diagnosed with Crohn's. I was originally diagnosed back in 2011, but if there's any advice I can give because I'm the same age as your daughter (and making my way through college), I would love to help!

I also wanted to agree with Maya142 about a therapist, though I actually see a psychiatrist. Psychiatrists are wonderful because they also have a medical background, so mine already had knowledge about Crohn's and all my medications. It made it very helpful to speak to her, and I speak to her more about my physical health than I do about my mental health.

 

[DJW]

Hi. I dont have much to add. It is good she has a diagnosis...treatment can start.
I was diagnosed when I was young. I live an active life including university, sports and career.
Sending you and your daughter my support and best wishes. Take it a day at a time.

 

[greypup]

My daughter was dx'd at age 16. She's 17 now and beginning to look at colleges. Whatever the GI recommends, you will be able to search it on this forum and learn quickly the questions to ask. Lean on everyone here whenever needed. This is a fantastic resource for information and support.

(((hugs)))

 

[SupportiveMom]

I hear you on the guilt front. I think we all felt it & continue to feel it at one point or another. My husband got it worse because right before diagnosis he was telling our daughter to 'toughen up' and it wasn't as bad as she was saying (he thought she was being a drama queen). The first thing she said out of her colonoscopy was "Guess I am not being a drama queen" to her dad. With everything regarding her care she now refers to me and doesn't really even speak to him regarding medical stuff. They are great otherwise, but now that she has this notion he doesn't know anything the responsibility of care falls a lot on me. He keeps trying though.

When my D was first diagnosed I found the healingwell.com forum and was on it for a while to ask questions about all my googling, and doctors appointments. I was still very lost. I bought a few books to understand better (Check out the research, books section for great titles) and when I found this forum & especiallaly the parents section I couldn't have been more relieved. Between us all we have some experience with almost everything. Ask away!

Be careful on google... I think it scared me more than anything, and I know better but I still do it!

 

[CrohnsKidMom]

Welcome to the forum! You have already been given great advice, and I don't have much to add... Only to send my support and mention that this forum has an amazing group of knowledgeable people, so visit often. I hope your daughter finds a treatment plan that works well for her and she starts feeling better really soon. Take care!

 

[AmaliesMom]

Hi All,

I really can't thank you all enough for your amazing support and informative responses.

When I got to Amalie the other morning I was so completely relieved. The poor thing looked so so sick. She had obviously gotten a lot worse since I had seen her. She has lost 10lbs since I had last seen her and was so pale and had such dark circles under her eyes.She is now 89lbs and 5'8. She was extremely upset but happy to see me. We had a little chat and I apologized to her for not taking her seriously. She told me that she hadn't even thought of that and that I had no need to apologize. This made me so happy.

One of the first things Amalie talked about was how embarrassing the disease is. She said she had dozens of concerned texts/ calls etc. from concerned college friends who had heard she was in the hospital. She said she was too embarrassed to tell them why she was in hospital. She told me that it was embarrassing enough having to go to the bathroom so often, now she had this condition that was all about her bowel. She also has a boyfriend and he is so worried about her and keeping her company in the hospital. She hasn't told him what's wrong with her though. She's just told him that she has a virus. I don't know what to say to her. I'm not in her position so I don't know how I'd react. How do I tell her that she can tell people and that she shouldn't be embarrassed.

As regards her Crohns. The inflammation is in her terminal ileum and it is severe. They've put Amalie on Budnisedone which I think is a steroid. She's also on iron tablets as she is severely anemic. Because of her nausea, she is also on anti-nausea medication. She's on IV fluids as she is dehydrated due to fluid loss. Amalie is currently on a clear liquid diet but they will be placing her on enteral nutrition from Monday on as she is so underweight and needs vital nutrients. They are inserted the naso gastric tube on Sunday, she is very scared about this and how it will feel. We're not sure how long she will be tube fed for. She is expected to be in hospital for another week at least to get everything under control. This is tough for her as she will be missing finals in college. She can do retakes in August but this is annoying for her as she has a fantastic GPA and works so hard but in my opinion. If we can get her health somewhat back to a new normal then it'll be easier for her to study and partake in exams. We have already contacted her college disability office to have her registered and with her consultant's report we should have her registered there by early next week which is one stress off.

That's all I have for now. Just said I'd share because although I've been talking to friends/ family about what's going on, they can't understand exactly what's going on. You guys can! I'm still here with Amalie. Staying in a hotel nearby. I'm going to wait with her until she's discharged and she'll probably come home for me to look after her as the college year will almost be finished anyway. Her boyfriend lives only an hour's drive from us at home so it won't be as if she's leaving him.

Bye for now,

Mary-Anne

 

[Jmrogers4]

Most likely she would have the NG tube for 6-8 weeks but many kids on here put it in at night and remove in the morning. Quite a few of us swear by the enteral nutrition. When my son was severely underweight it was the only thing that worked to put some weight on him (He was able to drink it as opposed to the tube but it was kind of a pain and you really have to make sure you stick to a schedule in order to get them all done in a day, we had to do 8-9 8oz drinks. It also can help knock out the inflammation.
Budnisedone is a steriod but release specifically in the intestines and is not as systematic as prednisone so you generally don't have all the side effects you would with prednisone.
My son although much younger at diagnosis he did not want to talk about it or anyone to know for many months. He had a close friend and neighbor that he has known since they were 2 and she would "cover for him" when he had to use the restroom or was having problems.
Of course it's up to her to choose when, who and how much she shares but I would say start with a few close friends and take it from there. I was 22, when my then boyfriend, now husband was diagnosed. It certainly did not change the way I felt about him and I just wanted to support him however I could.
Hope the IV fluids and nutrition perk her up. I know that scary, underweight, malnourished look well but the right medications and nutrition should hopefully get her back to feeling herself.
In regards to inflammation at terminal ileum make sure she has her vitamins levels checked Vitamin D, Magnesium, Zinc are pretty common ones to be low in especially with inflammation at the TI

 

[CrohnsKidMom]

My son is 9yrs old, so has no problem talking about poop and gas and such. Having said that, he hasn't told any of his friends that he has CD. I think he feels self conscious that he has a condition, not that it is CD specifically.

The way I grew up, GI issues were not discussed. Very unladylike! So, at your daughter's age I'd have felt embarrassed too. But, your digestive system is no different from your respiratory, nervous, or muscular system. We all need these systems to function well to be healthy. I think as time passes she will become more comfortable sharing what she has with her friends. I would just remind her that it's nothing to be embarrassed about. Her friends care about her. If it was one of her friends that had CD, she wouldn't think any less of him/her. She would want to be of support, and I'm sure that's what her friends want to be to her. But as long as she has you to discuss it with for the time being, that may be all she needs for now. Just my humble thoughts....

 

[theOcean]

I'm glad to hear that your daughter isn't upset with you...

As for her telling people, that's really up to her comfort level. I'm very open about my having Crohn's, because my taking medications makes things a bit obvious and I'd rather people know than not know. I usually just explain to people that it's an autoimmune disorder that I have to take medication for, and that it affects the gastrointestinal tract. More often than not, they've already heard of someone else who has Crohn's, which makes things easier.

As for her boyfriend... I was three months into dating my boyfriend when I was hospitalized last summer, and he knew that I had Crohn's already. He just didn't know how sick it could make me. But I told him about it, and he was there with me in the hospital all the time, through surgery, and listened to all the doctors and nurses with me even though it was embarrassing and I was worried. He was amazing through all of it, and we're still together now. So that's something for her to consider, and I'm the same age as she is.

Do you know which iron tablets she's on? Some can upset your stomach. If you're located in Canada, the brand that I use is Proferrin, which is incredibly easy on your system. It may be that she might need an iron transfusion if she continues to have low iron levels while in the hospital, though. When I was quite sick last year I had two.

As for school -- is there a disability office that you can get in contact with? Mine completely let me make up for everything during the summer when I was sick, and I caught up in time to be with everyone else the next semester.

I'm glad we got to hear an update from you! I hope that you're feeling less upset, and that your daughter feels better soon. :hug:

 

[DustyKat]

Hi Mary-Anne and :welcome:

I am so very sorry that I am late to this and that your daughter is having such a hard time just now, bless her and you too! :heart:

You have been given fab advice so I don’t really have a lot add to what you have been told. :ghug:

The guilt? Oh man, I have so BTDT! :lol:

I have two kids with Crohn’s in the terminal ileum. They were diagnosed at an earlier age than your lass but my daughter is now 22 and my son 20. If you want to pick my brain about anything please don’t hesitate to ask.

If there is just one thing I can suggest straight up it is to ensure that they draw bloods for:
Iron Stores
Folate
B12
Vitamin D
Magnesium
Zinc

…with severe inflammation in the TI there may well be deficiencies that extend beyond just needing iron.

Good luck and welcome aboard mum.

Dusty. xxx

 

[Tesscorm]

I'm glad you've reached your daughter - I can absolutely appreciate the relief in being with her! It's so tough when you just can't be next to them!

My son also used enteral nutrition to induce remission and has maintained a level of supplemental EN for continued nutrition for almost 3 years (he's 19 now). He also inserted the tube each evening and removed in the morning. NG tube size seems to make quite a difference in ease of insertion and comfort - my son used 6FR, and although it is infant/child size, he was 5'10", 150+ lbs when using it and it did the job!

As far as telling others - my son has been open about his crohns with all his friends since diagnosis and has found only support. But, there's no reason why your daughter needs to offer 'details' about her illness - theOcean's explanation is clear and brief (actually, it's pretty much what my son explains if he's speaking with only an 'acquaintance'); your daughter shouldn't feel she needs to explain more than that if she's not comfortable with it.

I hope the treatments work quickly for her and she can get back on track with school and her day-to-day life! :ghug:

 

[greypup]

I agree that encouraging your daughter to let her friends help support her is a good thing. In fact, it's prob what helped the most when our daughter was first dx'd. She was 16 then and her friends were very supportive. When they would come visit, she was so happy because it made her realize how important she was to them. They were able to rent movies and hang out on Friday nights or just have good girl time. She's also been dating someone for the past 7/8 months and he too is compassionate and supportive if she is feeling off. The support these kiddos are capable of is AMAZING! I believe when they feel good emotionally, it helps them heal physically.

Good luck w/the NG tube and feedings! I hope that Amalie begins to feel better soon.

Hang in there! You're a great mama!!!

 

[Precious ones]

I am currently at the same place as you with my 10 year old very recently diagnosed as severe and waiting for my other son to be diagnosed with similar symptoms. Keep going over everything I have fed them over the last couple of years and also they have had a glass of milk every night since babies, yet I keep reading about the bacteria MAP found in milk? Having two boys to be diagnosed at the same time, you can't help but wonder why, have I done something? I am glad to have found this site to see how others cope and manage this disease. My son is into week four drinking Modulen only but still has terrible night sweats, also started azathioprine. Looking at other posts the drinks seem to help. I wish your daughter well with this journey.

 

[Orchid]

MAP can indeed be found in milk, especially American milk because the FDA has the highest acceptable level of pus PPM in milk in the developed world. However, it's not really your fault, how could you know you or your partner carry a NOD2 polymorphism without genetic consultation? For most MAP is a complete nonissue so it's not something typically discussed or thought about despite the fact it survives pasteurization and is remarkably hard to remove from a water supply.

 

[CrohnsKidMom]

I find the whole milk think very frustrating. My son with Crohn's loves milk, and always has, and I wonder how that has played a part in his dx. Strangely, the GI recommends 2 glasses of milk a day for my son. Is it common amoung GIs to dismiss the milk theory, and encourage kids with CD to drink it (except those on EN, or who are intolerant/allergic, obviously)?

 

[Orchid]

Quite honestly, even if you took milk out of their diet they would still likely contract the bacteria from meat (did I mention MAP is incredibly resistant to heat?) or animal byproducts in food, or simply from drinking water as it survives most sanitation schemes and comes right out the faucet.

The MAP hypothesis is still somewhat controversial also, it's not found in every case of CD though that maybe because MAP in the human body is a remarkably small bacteria that spends much of it's life in host blood cells or it's caused by other small bacteria we haven't discovered in the remaining cases.

 

[SupportiveMom]

Before my daughter was on EEN she had lactose free milk and had no issues with digestion with it. Regular milk and cheese was a definite no. Her GI said 'even though the research says there is no corolation many crohns patients can't tolerate dairy'. She has the approach if you can manage it drink the milk. If not get it from other sources, and always take a multivitamin.

 

[AmaliesMom]

Hi Guys,

It's been a long long time since I was on here, I apologise. Amalie is doing extremely well now. She has her Crohns pretty much under control using a combination of Pentasa and Humira. I'm now writing in connection with my other daughter, Zoè. She's 20 and approached me with some worrisome symptoms.

She's been experiencing a lot of things similar to what Amalie did. Frequent bowel movements, around 10 per day, fatigue, feeling unwell etc. She's also got a blotchy rash all over. Her temperature is also constantly elevated anywhere from around 99.5 to 101.3F. I was so ready to bring her to our local GI because I was so sure this was Crohns rearing it's ugly head for Zoe. That was until Zoe came into my room in a crazy state last night.

She told me that she hadn't told me about one last thing. She noted a lot of stringy looking things in her stool, TMI I know, sorry! She said they were almost like rope fibres. She also said there were some white flecks. She's afraid she has some kind of parasites. I didn't really go through this with Amalie. I asked her if these fibres moved or if she had itching or anything. She told me no, they definitely didn't but there was some mucous. She also said that these fibres don't move and that she only ever has itching on a really bad day when she's irritated from going to the bathroom so much. So I don't know what to do. Do any of you think that her symptoms could all be due to parasites? I was wondering if these fibres could be undigested food in her stool? I have no experience with undigested food as Amalie was never very open about stool appearance.

I was wondering if any of you had anything to offer on the subject? I have very little experience with parasites vs. undigested food in stool. I don't know how to tell the difference or what to do. Zoe is very against seeing a GI in case it is parasites and she gets embarrassed.

Thanks for any help in advance!

Mary-Anne!

 

[CrohnsKidMom]

So sorry your other daughter is now having symptoms. What colour are these stringing looking things in her stool? White, like the flecks?

And I do think she should see a GI.

 

[AmaliesMom]

So sorry your other daughter is now having symptoms. What colour are these stringing looking things in her stool? White, like the flecks?

And I do think she should see a GI.

She said the colour changes but is usually just a little lighter than stool coloured and looks frayed at the ends and sometimes in the middle there's frayed bits. I really want her to see a GI but she's now convinced that she's got parasites and nothing else. I'm not convinced though.

 

[crohnsinct]

She needs to be evaluated. You can start with a general practitioner. They will do regular stool studies to check for parasites, infection and such. That is a given in all cases. I would also ask for a blood draw to check inflammation markers and Hgb etc. In addition, I would ask them to send another stool sample for a fecal calprotectin test. Elevated fecal calprotectin indicates organic issues rather than functional (IBS). Parasites and bacterial or viral illnesses can raise FCP. However, if the parasite/bacteria tests come back negative but fecal calprotectin is elevated, it would indicate something is going on and she should be evaluated by a GI.

Good luck. I am sure she is scared given her sister's disease. I had that with my second daughter but best to get this all checked out as soon as possible. Whatever it is you want to control the dx and not let the disease control it. That is what happened your first time around and mine. Believe me it is much easier when you are ahead of the disease...any disease.

 

[Madhu]

Hi there,

Sorry to hear your other daughter is facing similar symptoms too. Though she is convinced now that it is just a parasite, please do not ignore it. I am not a parent but I still feel my husband's Crohn's could have been under control had we not ignored his symptoms in the beginning. Please do consult a GI and if the doc says there's nothing to worry about, you can happily celebrate

Good luck to you and your daughters!

 

[Lady Organic]

Just before diagnosis, i was convinced I had parasites. I was in massive blood and mucus and kept saying I simply had a bug. I just wouldnt accept the idea that I could have a serious disease and was in denial.
Mucus in the context of an IBD can be thick, gelatinous, fibrous, ''spiral'' form, can be white cream/beige in color. She must consult a GI asap with all those symptoms and sister diagnosed with CD. whether parasites, IBD or anything else, the GI is the expert in analysing and giving diagnosis on bowel issues. its their job , nothing to be embarrassed about consulting one, they investigate dozens of patients with same issues everyday. Its better to consult now than risking escalation of this situation and risking being admitted. if she can get an appointment with her sister's GI very soon that would be great.