A newbie mom

[Fourlocos]

Hello, I am so glad to find this forum and hope to learn from you. My son who is 26 yrs old saw his first Gastro doctor today. He is scheduled for a colonoscopy monday morning and a biopsy. He had a fasting blood test last week with his internist and still didn't get the results of the gluten portion since she is out of town till monday. We went to the gastro on our own before she could get us that far because he was bleeding earlier in the week and called me for help. I said this is going to slow for his dad and I, and we just booked the first appt. open with the specialist. We do not know yet anything but it looks like it might be Crohns or UC. This started a couple months ago. He started to drop weight suddenly and had nothing but the runs and urges to go all the time. He has lost 30lbs as of today and just 4 lbs this week alone. And he eats like a horse I might add. Started to interfere with life and he let us in on it since he lives on his own. We started to notice some thinness in his face but with baggier clothing on the weekends when he comes to visit, we didn't know just how much weight was dropping off till I saw his jeans without a belt on just drop to his ankles. I near fainted and panicked. Then he told us about how bad it is has been lately. I got him in with the best diagnostian I knew and she started his work up, blood tests etc and had a week off in the mean time when he had quite a good bleed going instead of a BM. Waited a day to tell us and should have gone to the ER we are now being told. Anyway waited a week and now he went to the Gastro and he wanted the tests done right away. My son also has a sore on the inside lip of his mouth that on Labor Day was so swollen. We had a family BBQ and when I took a look at him, on a holiday, I sent him right over the urgent care to get it checked out. He was put on an antibiotic which only made his diarreha worse and didn't reduce the swelling at all. Referred to his dentist then, who then said see the oral surgeon immediately, who then said more antibiotics but wanted approval from the Gastro who is waiting since he said if it is Crohns, mouth ulcers are not uncommon. That is our story. I am freaked out and trying to stay calm for his sake. I had a dear friend who's husband has Crohns and lives fairly well with it now but had a few years of nothing but surgeries and problems. Luckily he is in remission and doing pretty good. I want to add, my son took Accutane 10 years ago for six months. Cleared his skin fantastically, but his doctor said it has been so long he isn't sure if it is related to it or not. I know that he had two surgeries when he was a child to remove swollen lymph nodes that were never found to be anything but reactive. Even mayo clinic found no known reason for them to react. I know that immune system issues can cause this and now with this possible diagnosis, well it all just seems to be puzzle pieces coming together. Sadly together.

 

[DustyKat]

Hi Fourlocos and :welcome:

I'm sorry you had to find your way here but glad you have 'cause this is a great place with loads of support and info. There are many parents on here and we so completely understand your fears and concerns as do the many, many members on here that have IBD themselves.

It's so good to see how involved you are and the wonderful job you are doing advocating for your son, good on you. Many of the symptoms you have mentioned certainly sound like IBD including the mouth ulcers. My daughter was ill for about 2 years before she was diagnosed and I can certainly relate to the puzzle pieces coming together when you know what are looking for.

I wish your son all the luck in the world with his upcoming tests and appointments and I hope they give you the answers you are looking so he can find some relief and peace. Please keep us updated and if you have any questions at all just fire away. Good luck and welcome aboard!

Thinking of you all, :hug:
Dusty

 

[Crohn's 35]

Welcome to the forum!! You are such a great parent to get him help. Having a Gastroenologist is the best kind of doctor for CD or UC or CC (Crohns colitis) internists are not as specialised in that area. The sores in his mouth, I get cankers and cold sores all the time since I was a kid.

Alot of people here have been on Accutane and get Crohns later.... coincidence who knows. My daughter is heading for the medical field and has acne and she wanted Accutane or something. When I found out about it on this forum, I told her no. CD and UC is very hereditary in our family and she is in her 20's which seems that Crohns hits that age group hard. I am so happy he got a colonoscopy so soon, that should tell more of the story. IN my early days I lost 40 lbs in 2 months. Took a year for a diagnosis.

This is debilitating disease and can be controlled with his gi getting the right meds. Possibly even surgery. I know you must be mortified...I always worry about when my daughter gets ill because I know there is always that chance... Gotta pray she has her fathers genes.

Any questions you have, someone is bound to help you, in the meantime you are welcomed here any time and I think you need a big hug! (((hugs))). Keep us updated ok?

 

[Fourlocos]

Thanks so much. I need to talk about it and he is angry if I bring it up. He can talk to me, but if I start to stress about it to him with questions etc. He gets angry. Parenthood is hard. I feel guilty! We don't know yet so I have hope but honestly my intuition is major with my boys and when I know, I just sort of know and I feel the doctor is right on due to symptoms. I keep reading the emptying out drink isn't so great. I wanted him to hang here for the day but he is adament that he will be fine at his place near his own toilet!
We have no history of any auto immune diseases or bowel problems on either side of the family and he is one of 20 grandkids. Just a fluke maybe or is accutane causing more damage years later than we realized. He could of had this for a very long time and it wasn't
in an active stage? I find it interesting so many people have the accutane history. Is it that bowel illnesses and acne are linked OR is it the medications for acne. I can't go back and change the course of treatment we decided on. He was 15, severe acne, upset emotionally from it, depressed when normally outgoing. I was ready to do anything to fix it and get my happy go lucky boy back. And it worked great but down the road there might be a cost to be paid for clear skin.

 

[Crohn's 35]

I understand how you feel and from a young man's point of view, no one likes to talk about their bowel habits with anyone, it is an embarrassing disease. He may think you are pushing him to give you answers he cant explain himself. The prepping isnt so bad, and he needs to be comfortable in his own enviornment. Having a bathroom all your own is nice.

I do think Accutane isnt't the main cause but it could be a trigger. Too many come on here and mention it. Dont worry too much, let him take it day by day. Once he has the scope and you can be there to talk to his Gi, (hopefully he will let you ) and figure out what comes next. Take care.

 

[DustyKat]

Oh wow Mum, you can't blame yourself for this! We all have 20/20 vision in hindsight and if the Accutane is the cause or part of the cause, had you known at the time you wouldn't have given it to him would you??

On the other side of the coin, other than my daughter having a very distant relation with Crohns there is none in our family either and she has never suffered with acne. .......... so who knows, there's just too many variables with this disease. I know it's hard but try not to beat yourself up about it, there is nothing you can do about why he has it just channel all that energy into what you are already doing and that's being the best darned advocate and the most informed and supportive Mum you can.

:hug::hug::hug:
Dusty

 

[Dexky]

Hi Fourlocos, I'd say he is very lucky to still have you so involved at this stage in his life!! I agree with Dusty!! There's no way it could ever be proven that Accutane had anything to do with his illness, so don't think twice about it. Help him face it head-on without stressing over what-ifs!! Good luck and welcome!!

 

[Fourlocos]

Thank you all. I think it is human nature to try to find blame in the beginning of these types of things. I am very close with my son. He comes to me when his heart gets broken and when he is in trouble like this. Day to day he lives his own life and makes us proud. I know when he reaches out to me about his health, that I need to act quickly. He won't just call because he has a cold! He has had his share of medical issues since childhood. I just said the other day, he might be an adult now, but to me he will always be my first born and my child. We hold on to hope that they are wrong and will find some other issue instead, but my gut tells me by his symptoms, they are are the right track. Then the ball is in his court. Diet, less stress, monitoring his symptoms etc. are his responsibility as an adult. But you can be sure I will cater to his diet when he comes for Sunday dinners!

 

[Astra]

Hi Fourlocos
and welcome

Just to concur, you're doing a great job! As parents, of course we're gonna blame ourselves for everything our kids do and get! It's human behaviour, but we've gotta let go, let them find their own path, and this includes taking responsibility for their own actions. My 18 yr old daughter has gone away to live at Uni, I can't be there, I'm on the phone every day, but I've had to stop wrapping her up in cotton wool for a start!
Try not to beat yourself up, this disease isn't something you've done, honest!
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

 

[Fourlocos]

My son had his colonoscopy today and he has crohns in his colon. They were unable to get the scope beyond it due to the amount of inflammation and it was too small of an opening. So he is to have a scan this week so they can finish the diagnosis to check the lower and upper intestines. They want to repeat the colonoscopy in a month if they get him under control and improved. He started his pred today also. 30mg a day for week one, 20mg for week two and etc..... They will see him weekly before the taper step down to decide if it is working and checking him for side effects as well. I felt very confident with the doctors and staff and felt they were on top of everything. They will introduce the other drugs slowly and will start with the least bothersome to the injectables, or IV ones if needed as last resorts. Again I liked the slow careful approach which sounds like what most of you have experiences as well. The pictures I saw were so sad and the amount of ulcers he had were unreal to me. No wonder why he is so ill! He lost another 5 lbs just since Friday. So down about 35lbs now. He said the only bright side to the whole thing! I am sure next weeks visit they will have more information for us on vitamins, supplements etc.