Confused and scared

[szmama]

Hi all. I have been reading through some of the messages on this board and it seems like a very supportive community. We are in the process of seeing if my son has an IBD. I am so confused by his symptoms and feel like I'm not even sure how we got here. At the end of January he had what I thought was a stomach bug (he didn't vomit, just diarrhea) that wasn't getting too much better after three days and I noticed some pinkish color when I wiped him. His doctor had him come in and ordered blood work and stool tests. Everything came back normal except for his calprotectin level which was quite high. His ped said that she then thought he never had a virus but was in a flare for IBD and referred us to a pediatric GI doctor at our local hospital, but we live relatively close to CHOP and after some quick research I made an appointment with their GI department (they got us in so quickly!). By this time my son was back to normal (he had tons of energy even during his 'illness') and while he lost a little weight from being sick he had gained it all back and then some by the time we saw the GI doctor at CHOP. The doctor asked us to re-do the FC test in a few weeks time and I just took it to the lab this morning. I am so scared for the results even though I know it's better to know so we can begin treatment if necessary. The doctor said he couldn't tell us exactly what was going on because my son did seem to get better on his own, was not anemic and although he's always been on a lower growth curve he's always been very much on his growth curve (no falling off and shortness definitely runs in my family). I have gone down so many internet rabbit holes and haven't been sleeping well at all for the last month.

I am so scared of what this means for him even though he has no pain and seems to be "back to normal." I also know IBD is super tricky and I worry that things will get bad again before our followup appointment in 2 weeks and I live in fear of the FC results coming back. I know this probably makes no sense! I just needed to vent to maybe some people who would understand.

 

[pdx]

I'm sorry that you're having to deal with so much uncertainty right now--it's scary when you are waiting for results and appointments. It sounds like you are doing everything right, though, and it's great that your son is feeling better now. Try not to worry too much until you've gotten the next FC results and talked to the GI doctor. (easier said than done, I know!) Hang in there!

 

[lukesjr]

One thing to remember, is many of the people posting on a forum are at the worst end of the Crohns spectrum because they are suffering. There are plenty of people with mild crohns that manage it completely with supplements and diet. Take it one step at a time. Get the tests. Consult your doctor. Read all you can on it.

Not everyone ends up on a biologic or needing surgery! Breathe, everything will be ok. Just don't tuck your head in the sand and you and your son will be just fine.

 

[Jo-mom]

It is better to know earlier. Some kids have IBD for many years and then learn about it after damage has been done. This happened to my son - probably had crohn's for years and he ended up with arthritis. He was diagnosed at 19. He is 21 now and doing well on Remicade. Good luck and keep us posted. And yes, this is a great forum. Sorry you are going through this - but it will get better.

 

[szmama]

Thank you all so much. It is just really hard - he's only 7 and I am now second guessing every weird day or symptom he's ever had. Should I have know something sooner? I do hope that too much damage hasn't been done and that we can get to treatment. He doesn't really know anything right now and is looking forward to playing baseball - I hope he can still do that!

 

[Jo-mom]

Your son will live a normal life. You are doing everything right (except maybe worrying too much). Don't overthink - just to put into perspective. My son couldn't even walk and was very underweight - and now he is totally doing well . First find out what's going on - and there are so many medications for IBD that work well if it comes to that. You will make yourself sick if you keep thinking of the "what ifs".

 

[szmama]

Thank you Jo-mom, I really do need some perspective. I'm sorry your son was so sick and so happy he's doing well now! I think I may need to take a break from the internet this weekend too as we likely won't have test results back until next week.

 

[crohnsinct]

Definitely take a break and don't waste another second researching something that you don't even know will come to be.

Fecal cal protectin is a very specific marker for the intestinal tract but ill raise due to a number of factors IBD just being one of them. Gastro bugs are another cause so it could be that as well. Celiac, bowel cancer and diverticulitis are others but it doesn't sound like celiac and he is much too young for the others.

The fact that he stays on his growth curve is very encouraging as is the fact that he got better on his own.

Just sit tight and wait for the results. There is plenty of time for research later. This is a great group for reality checks. More scientifically based and non inflammatory (see what I did there. We are here for you when you get the results. Please do come back and fill us in.

FWIW - I have two daughters with Crohn's. One has mild disease and the other has severe and refractory disease. Both are doing great. High academic achievers, Presidents of high school clubs, on high school and travel sports teams. My severe girl is in college across the country living her best life. She did have to miss a semester of school due to IBD and complications but she jumped right back in. Everything is going to be o.k.. It isn't normal and the adjustment takes about a year to get your feet back under you but you do and eventually there is a time where you don't think about IBD every day.

Enjoy your weekend.

 

[szmama]

Definitely take a break and don't waste another second researching something that you don't even know will come to be.

Fecal cal protectin is a very specific marker for the intestinal tract but ill raise due to a number of factors IBD just being one of them. Gastro bugs are another cause so it could be that as well. Celiac, bowel cancer and diverticulitis are others but it doesn't sound like celiac and he is much too young for the others.

The fact that he stays on his growth curve is very encouraging as is the fact that he got better on his own.

Just sit tight and wait for the results. There is plenty of time for research later. This is a great group for reality checks. More scientifically based and non inflammatory (see what I did there. We are here for you when you get the results. Please do come back and fill us in.

FWIW - I have two daughters with Crohn's. One has mild disease and the other has severe and refractory disease. Both are doing great. High academic achievers, Presidents of high school clubs, on high school and travel sports teams. My severe girl is in college across the country living her best life. She did have to miss a semester of school due to IBD and complications but she jumped right back in. Everything is going to be o.k.. It isn't normal and the adjustment takes about a year to get your feet back under you but you do and eventually there is a time where you don't think about IBD every day.

Enjoy your weekend.

Thank you for all of this. The GI doctor didn't think it was celiac either FWIW. And the stories about your daughters are so encouraging!

My son woke up at 4am and had a BM that was looser than normal. Why does this have to happen on a weekend? We had 5 'normal' weeks between whatever it was that happened in Jan. and now. And another almost 2 week until our follow up appointment. If he starts down another 5/6 day (or more! ) path of diarrhea is there anything the doctors will do without a diagnoses? Will they allow anti-diarrhea medications? I hate to think of all the missed school just waiting (although I know it's common with Crohn's). He's struggling a bit with his reading and he has an amazing teacher this year who has worked hard with him so I get worried as well about him slipping further behind his classmates.

 

[crohnsinct]

No, not really. There isn't a lot they will do. You can check with GI about using loperamide. Some allow it, some don't.

It actually is not normal to miss school with Crohn's. Sure flares make it a little more difficult but the kids generally get accommodations such as unlimited bathroom access and the ability to come in late etc. If leaving the classroom to go to the bathroom doesn't bother him, I would let him give school a try. Even if he could only manage a half day here or there. I would go to the school and met with the. teacher and administration and explain the situation...that you are undergoing investigation and while you don't have a dx and know exactly what is going on, you will need a couple of weeks of flexibility. But I want to stress that most kids do reach a solid remission and don't miss any school and live perfectly normal lives.

Honestly, two weeks is pretty quick, many people wait months and months. Two weeks of 5-6times a day should be o.k. but if it goes on for more than a few days or you notice that he is getting worse and worse, I would just call the GI and see what they say. They may take him in sooner. But one day of losses than normal stool doesn't really mean he is heading back down a bad road. It is easy to be paranoid in the beginning and especially without a dx. However, think about yourself. Normal people don't have the exact same stopping habits every day. Some days more often, some days looser etc. This could just be a function of something else and be a one off. Try to relax. No matter ho hard you try to hide it, kids pick up on your anxiety. Could be the questions we ask, the fact that we want to see what is going on etc.

I also want to prepare you for your appointment. I don't think you will get all the answers you are looking for. You will find out what the most recent fecal calprotectin level is and what the next steps are. If the fecal cal is high, the GI will likely want to move to look inside and see what is going on. This would be upper endoscopy and colonoscopy. After that it is likely that they will want to do an MRE to look at the small bowel as the scopes can't reach much of the small bowel. If the FC results are normal, and is still feeling fine, then you be sent on your way. If he isn't feeling well, then you start investigating other causes for altered bowel patterns, SIBO, IBS etc.

Hang in there. Each day you are making a little more progress.

 

[szmama]

I have been trying to take it one day at a time and now all of the corona virus stuff is adding to my worry. We still have no heard back about the repeat cal pro results although I did miss a call from the doctor on Saturday morning which has got my head in a spin. Why was he calling on a Saturday and not leaving a message? I'm concerned the diagnosis may be delayed (will they delay a colonoscopy?) due to everything going on. I know how serious the world situation is and coupled with our personal worries it is A LOT right now to handle. My poor kid - I just want him to be happy and well.

 

[crohnsinct]

You are doing a great job! Please try to remain as clams you can. Our kids pick up on our stress and stress all only make him feel worse.

re: Colonoscopy. I know that the AGA has issued guidelines that all non essential scopes be postponed. Whether or not a diagnostic scopes for a child who is not inpatient counts as non essential I don't know. Children weather Covid-19 a lot better than adults so maybe they will still go through with scope although it is really spread that they are trying to contain so they might. Also, because of the potential shortage of hospital beds etc I know that they have the children's hospitals on alert for taking some adult patients.

Your GI appointment might get cancelled also. Our children's hospital has cancelled all non urgent appointments and procedures.

The calling on Saturday could just be a function of being busy and that is the only time the GI had to make phone callsign peace and quiet. I hate when they do that. Weird that they didn't leave a message. Is the office open on Saturdays? Any chance it could have been the robot caller, calling to confirm your appointment or something?

How is your son feeling. Last we heard you were concerned about a looser BM. Has he trended downhill?

 

[szmama]

I definitely need to work on my anxiety. I know this. The waiting for the test result was so hard. However, our GI doctor posted it to the online portal earlier and his FC is totally within the normal range, 26, after being very high in January when he was sick. It's quite a relief and I don't really believe it to be honest. I even asked the doctor if a flare was over could it go that low without medication if he had an IBD and he said significant inflammation was unlikely with this result so I am going to listen to the expert and not be as worried. My son has been doing great. We are still going to do a followup appointment with the GI doctor, but obviously rescheduling now until after the Covid-19 stuff settles down.

I wanted to say again how amazing you all were and how much I admire you and your kiddos.

 

[crohnsinct]

BEST NEWS EVER!

So happy for you guys! It definitely sounds like it was just a GI bug!

Love to say goodbye!

We are here for you if you ever need us but hope you never do!