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Just checking in.
I thought of you guys while I was changing Grace's tube.

We change at home and it's easy to do.
Did she get a mickey or a mini (atm 1) button?
 
What's going on with her tube? Anything we can help with? How is she feeling - any better on Stelara?
 
Hi Maya and FW,
I am pretty sure it is granulated tissue. We had a local GI doc take a look and he agreed. We got some granlousos ointment that is supposed to help.
 
That can hurt a LOT but it is usually pretty harmless. We cauterized it with silver nitrate sticks. They showed us how to do it in the office. Cauterizing it hurt (burns) but it really works well.

We also tried several different ointments (including a steroid cream) which helped a little, but not much.

The good news is that for us, once the site had really completely healed, the granulation tissue went away.

My daughter's site took a long time to heal - 6 months or so (she's just a slow healer) but after that, we didn't really have to worry about granulation tissue around her G tube at all.
 
Really hope she feels better soon. It took us quite a while to get used to dealing with a tube -- it took months, not weeks.

Now we're very comfortable dealing with M's G tube but her J tube (which was placed much more recently) is another story ;).
 
Grace never got the built up scar tissue but she did take awhile to heal.

Grace had had here's for years now and it's just second nature to deal with it. Amazing how time flies.

I hope she feels better soon.
 
I forgot to update, Caitlyn ended up in the ER while at travel camp. She had some kind of infection around the G tube. They treated her with antibiotics. She is doing better. We went to visiting day for the younger kids yesterday. My little one is doing well at camp thankfully. The nurses said she did great with the Humira shot.
Several of Caitlyn's friends who were there visiting their siblings didn't want to talk with her and treated her differently because of her G tube. She was really sad about it. You would think older teenagers would be better then this. I am so sad for her.
 
What?!! How do they even know about her G tube?! Is this a Crohn's/Colitis camp?

I am really shocked :(. That's awful!!

My daughter has NEVER had trouble like that. Her friends have been extremely supportive even with a very visible NJ tube. She was in high school at the time and kids did ask about it but she explained very simply that she had Gastroparesis and Crohn's and had trouble eating and had to gain weight.

Her psychologist helped her a lot with explaining it to people. She tends not to let her G and J tubes show now though - she will make sure she is wearing a tankini or one-piece at the beach.

She says it's easier than people staring and asking question, though she has certainly never had anyone say anything "bad."

I'm so sorry to hear that. Sending hugs to Caitlyn.

One thing M has said is that it has become easier as she has gotten older. Now that she is in college, she finds college students and young adults are VERY accepting and understanding. It's much easier for them to understand than younger kids.

So I expect it will get better.
 
As for the infection - M had two infections at her G tube site in the beginning - about 2 months after the G tube surgery. She got oral antibiotics and Bactroban for them. Now if we see any sign of an extra redness or discharge, we use Bactroban.

No G tube infections since then.
 
Maya,
Thanks,
I a, going to call tomorrow and ask about bactroban as it seems like the infection is coming back. The kids saw the tube as she was using it and the backpack.
 
Poor Caitlyn :(. I am so sorry she's had a hard time. I believe there is a teen group on Facebook for tubies - my daughter is not part of it, but if you message Feeding Tube Awareness, they can refer you there.

Does Caitlyn have to do feeds during the day? What's the rate you're using?

In the beginning, we did 18-20 hours of feeds, so M had to wear the backpack too. That was with the NJ tube, and she was pretty self-conscious, but had to go to school with it. She got used to it and so did everyone at school.

But now that she has gained weight, we only need to do overnight feeds to maintain her weight. That is much easier - she just gets them while she's asleep and is disconnected before breakfast.

So once Caitlyn gets to a healthy weight, you will probably be able to cut down on hours. That will help with the conspicuousness.

Is Caitlyn headed to college in the fall?

How is she feeling?
 
Maya,
She doesn't want to go to college right now. Still working on convincing her. She still hasn't gained and her nausea is much worse. She feeds during the day and at night. When we get back home we have to speak with her doctor about retesting for the gastroparesis again to see if it is worse and consider a J tube.
 
M took a year off between high school and college to get her health under control. That helped. No harm in waiting till she is feeling better.

I would guess with her Gastroparesis, the G tube feeds aren't helping at all. M would just throw them up.

A GJ is easy to switch to - interventional radiology will do it - no extra surgery. Most kids do well with GJ tubes. It does require sedation (usually conscious sedation) to place, but it's generally not too bad.

A separate J tube would be a last resort if the GJ tube does not work. That would additional surgery and that's not quite as easy to recover from.

But for MANY kids, GJ tubes work very well.
 
Thanks Maya. It is confusing knowing about the different tubes. Caitlyn took this past year off so I am hoping she will feel well enough to start at least a few classes. She will be working one day a week at a small theatre teaching kids. She did it last year and loved it.
 
That's great!! Keeping busy really helps M - takes her mind of the pain. It's one of the things we learned at the pain program - keep things as normal as possible.

It doesn't matter if she starts small - even one class or a couple days volunteering - that will help her feel like she can do "normal" things and live a normal life.

I hope your GI is able to figure out her Gastroparesis and will allow you to try a GJ tube. It's the natural next step, if G tube feeds do not work. The tube (the button) is very similar except that there are two ports, so it's a little bigger. But otherwise, it's pretty much the same.

It worked MUCH better for M. With G tube feeds, she'd throw up with even 20 mL/hr which is a VERY slow rate.

When she had her NJ/GJ tube, we were able to go all the way up to 100 mL/hr, which meant we could easily give her 2000 calories during the day, plus 300-400 by mouth. That really helped her gain weight. Her GI and dietician were surprised to learn how much she needed to actually gain weight - they hadn't expected her to need 2400 calories, because she is so small.
 
Trying not to freak out. We noticed a swollen lymph node in the top of the groin area. How worried should we be about this?
Caitlyn is on Stelara and methotrexate.
 
Is it more than 1 cm ?
Any signs of cold or infection past few weeks?
Any scratches from cats within the past few weeks /months ?
Lasting more than a week ?

Please let her pcp know
They will measure it
Then depending will imaging it and do blood tests

The majority are from viral infections
 
Probably about 2cms. No colds in the past two weeks. We don't have cats or go near them as I am very allergic.
We are not near any of our doctors for another month, I will call the GI tomorrow just to see what they say.
 
GI doesn't handle it ...but good to let them know
But pcp handles it at first and then infectious disease handle swollen lump nodes if they haven't gone down on their own within 1-2 weeks

Ds had one that kept growing in his neck
Was not cancerous or infectious
 
I would let both your pediatrician and GI know. If you're not at home, it might mean an urgent care trip.

Sending hugs!!
 
Swollen lymph nodes has been a chronic problem for A. Most docs aren't concerned unless it is red or warm, indicating an infection....or has been enlarged for more than 2 weeks. Odds are her body is just fighting something.
 
Wanted to add
Was the lymph node suddenly large
Versus growing slowly
We were told suddenly
Enlarged lymph nodes is less likely to be lymphoma
And the lymphoma grows very slowly
Lymphoma is the big concern for kids with Crohns on immunosuppressants and biologics
Simple blood tests also can confirm whether lymphoma is still a concern.
Ds went from having nothing to the next day looking like a golf ball had been placed under his skin on his neck

If the lymph node stays for more than 1-2 weeks then infectious disease is the next step
Due to the immunosuppressants/biologics taken
They will run more blood work for infectious causes
If those are negative then detailed ultrasounds of the lymph node to again confirm it's not cancerous with a trial of oral antibiotics
They will also request a quantiferon gold blood test (more accurate tb test )
If all of those are negative
They will offer to do a fine needle biopsy vs excisional biopsy
Fine needle biopsy uses ultrasound and a needle
Pros -very easy /can tell if there is abscess
Cons-no real data can be obtained from the needle biopsy (useless)

They may also do at least 48 hours of iv abx to try to shrink the lymph nodes

Last resort is excisional biopsy (surgically removing the lymph node)
This isn't done until you have had iv abx at least
Excisional biopsy is definitive for whether it's cancerous or infection
In Ds case it confirmed that his was neither infection related (despite being told for over a month it was "just a virus" ) OR cancerous
His was confirmed to be evidence of another autoimmune disease process in progress

Remember it's your kiddo and go with your gut
 
MLP,
It was a sudden enlargement and it seems to be shrinking already. I am going to check it this morning and depending on how it looks call the doctor.
 
Finally spoke with the doctor today about the lymph node. It was not our doctor but someone else in the practice. He basically blew me off.
Meanwhile her stomach pain when eating solids is very bad again and her nausea is horrible as well.
Why can't my baby catch a break?
 
That sounds like Gastroparesis Kim. Is she on a motility medication? Has she ever tried Domperidone? It made a HUGE difference for my daughter. She went from relying completely on tube feeds to being able to eat 4 small meals!

There is also Erythromycin - we had some success with that for a while.

How much food is she eating and how much formula is she getting through the tube? Does she have nausea with feeds?

Have you considered switching GIs to an adult GI at a university hospital? It sounds like Caitlyn needs specialized care - she is complex.
 
Hi Maya,
unfortunately Erythromycin didn't work for her and she started having side effects almost immediately from the domperidone which freaked her out and she didn't want to continue with it.
I am trying and trying to get her in to see the motility team in Ohio again. Her doctor has to send a letter for them to see them again and he is away right now.
Ugh!!! Why is it always something?
 
Hugs
Was the erythromycin (ees)?
Ees granules seemed to work well for ds
Eryped did not work for him at all
What dose was she on?
They can go up to 200 mg -30 minutes prior meals

What are her meals like ?
For ds he has a fat level limit and fiber limit
If either is too high then he won't be able to eat at all

How long between meals ?
How many calories at a meal ?

Even with ees Ds has to really space out solid meals and can't eat more than 300-400 calories per meal
 
We actually had the same experience - EES granules worked well, Eryped worked but not as well. We also found the pill form was no help and the liquid form (either of the liquid forms, though EES was better) worked better.

What side effects did she have with Domperidone? At first my daughter had diarrhea, but it went away. She is monitored carefully for cardiac side effects. What dose was she on?

We get Domperidone tablets and were able to cut them so she was taking 5 mg at every meal first. Now she is taking the adult dose, 10 mg, since she has gained weight. No side effects at all.

There is also Reglan, though we were too nervous to try that.

There are also botox injections - our GI was considering that for M.

Can she really limit her solid food and go to mostly tube feeds? That's what my daughter had to do when her GP was really bad. We did about 85% formula and 15% food. The food was low fat, low fiber. VERY small meals at first - 200 calories.

Now she can eat about 400 calories at once.

As she gained weight and became less malnourished, her GI tract started working better. Her stomach got more used to food and she became able to eat more. It was a long process though, especially since she had been underweight and severely malnourished for a very long time.

I would say it took 8 months or so to really recover AFTER she got an NJ tube and started gaining weight.

That's when GP became much less severe and she was able to eat more.
 
Maya,
She is doing about 85% formula and 15% food. She eats tiny Amounts at dinner and the rest of the day is on the formula and overnight. She can't tolerate more then four cans a day.
At this point we have tried everything even the Reglan. She started having really bad stomach pain again the past few days also which had been a little better.
We have done the erythromycin liquid, Reglan, and domperidone.
We are trying to get back in to the motility specialist in Ohio again. I am at my wits end.
 
Botox may be a good option for her. It was suggested for M once - we never did it because at that point she was so underweight that it was clear she needed a tube. Once she put weight on, her GP got better as her body was no longer in starvation mode and got more used to tolerating food.

Or you could go to a GJ tube, so at least her stomach would get much less liquid in it. That way, only the food she eats would go through her stomach and the formula would bypass it entirely.

It wouldn't eliminate her symptoms with food, but it may help with the formula.

A GJ tube is a relatively easy switch - just done in interventional radiology. It's usually done with sedation so it's not too hard on the kiddo. It's such an easy switch that I'm kind of wondering why your GI hasn't tried it. It's pretty standard for a kid with Gastroparesis to get a GJ tube if a G tube is not working.

The other option would be a gastric pacemaker. That is a last resort usually, since it's a surgery.

I would definitely get her back to a motility specialist as soon as possible.
 
Saw a wonderful pediatrician today who it just so happens she did her residency where I used to work at Mt. Sinai Hospital in Manhatten and I knew her!
Anyway she is not concerned about the lymph node. She thinks it is from shaving. We justbneed to continue to watch it and make sure it doesn't get bigger or red or inflamed.
Her little sister however who I brought in as well because she has had a night cough has mycoplasma pneumonia. I was not expecting that at all.
If it's not one thing it's another.
I called the on call GI and he said to hold the Humira which she was due for tonight for one week. As long as she is better next Sunday she can have it then.
 
Kim, now that you mention it, one of my girls had that too from shaving. Under her arms. Her lymph node was nowhere near as big as Caitlyn's was, but it was enlarged. I forgot all about that - it was years ago. My daughter was on Humira at the time, which was what got us sent to the pediatrician in the first place.

Anyway, it went away and didn't come back.

Hope your little one feels better soon!
 
kimmidwife said:
Her little sister however who I brought in as well because she has had a night cough has mycoplasma pneumonia. I was not expecting that at all.
If it's not one thing it's another.
I called the on call GI and he said to hold the Humira which she was due for tonight for one week. As long as she is better next Sunday she can have it then.
Click to expand...

Kim, how is your younger daughter doing? And is Caitlyn feeling any better?
 
Last edited:
PDX,Thanks for asking,
My younger daughter is much better but still has a slight cough. I am putting the Humira off a couple more days. Planning to give it to her Wednesday. Fingers crossed that she is 100% by then.
Caitlyn is not doing well at all. I am not sure the Stelara is working. She is having so much stomach pain. Praying we can get in with the motility specialist soon.
 
Glad that your younger daughter is doing better, but so sorry to hear that Caitlyn is still in so much pain. :ghug:
 
kimmidwife said:
PDX,Thanks for asking,
My younger daughter is much better but still has a slight cough. I am putting the Humira off a couple more days. Planning to give it to her Wednesday. Fingers crossed that she is 100% by then.
Caitlyn is not doing well at all. I am not sure the Stelara is working. She is having so much stomach pain. Praying we can get in with the motility specialist soon.
Click to expand...

I'll join in for that prayer!. I hope you get the call for appointment soon. I can't imagine the daily pain she lives with.
 
Fingers crossed for you. Poor Caitlyn. Gastroparesis can be so miserable.

Can her GI switch her to a GJ tube while you're waiting for an appt. with the motility specialist? That might help a little and it's a pretty easy switch.
 
Still no appt. she has been having worse and worse pain. I am just so fed up.
Maya,
We aren't back home yet but if we don't see the doctor in Ohio before we get home we will discuss that with her doctor.
 
Caitlyn has been having worse and worse nausea. I called the on call Physcian at Nationwide. She was super nice and we talked for a while. She is going to speak with the motility team tomorrow about Caitlyn. She also told me their first move would probably be to change her G tube to a J tube which is what we have been saying to her doctor but of course they can't say for sure until they see her.
I hope everyone is having a good Labor Day weekend.
 
Caitlyn is in the hospital again. Her doctor is not sure why she is having so much pain. Looks like she is going to be having scopes, MRE, and another gastric emptying scan.
 
Sorry to hear this Kim.
Hopefully they can ease her pain.
Grace just started pain management again.
Hold on there.
Your all in my prayers.
 
Just checked in and I'm so sorry to hear all Caitlyn is going through. I hope things improve for her quickly! Thoughts and prayers.
 
They have done a bunch of tests. The good news is the Stelara seems to be working. The bad news is the doctor thinks she has amplified pain syndrome from her gut being inflamed for so long. We are still waiting for the biopsies from the scopes (expected to come back in a week or so and the MRE results from today.
If that looks good she will come home tomorrow. The doctor wants us to look at taking her to one of those inpatient chronic pain rehab programs.
I am just so tried and worn out. Why can't she catch a break?
 
Sending big hugs Kim. It is so tough. We had the same sort of experience with M's AS. It was uncontrolled for so long that she developed amplified pain syndrome.

She was in so much pain that she wasn't sleeping - would lie awake till 5 am in the morning. She was unable to go to school (missed a LOT of school in high school and withdrew 3 weeks into her first semester in college), unable to do stuff with her friends, unable to play sports (she had been a very active soccer player) -- she was pretty much debilitated by the pain and as she used to put it, she "didn't have a life," she had "a series of never-ending medical appointments."

You can imagine that we were both exhausted and desperate by the time we got to the pain program. But it really was life-changing for her.

We had spent YEARS working on her sleep - trying to get her to fall asleep on time and wake up on time. She just couldn't sleep, because of pain. We tried EVERYTHING - even addictive sleep medication.

After 3 days at the program, she was sleeping through the night and falling asleep in 20 minutes, instead of lying awake for 5-6 hours. No meds.

There are lots of other examples - she gained a lot of confidence, she learned how to cope with pain and how to use the tools she learned there to deal with pain once we got home. She was able to reduce her pain meds after the program.

The programs are really wonderful - they aim to teach the child AND the parent how to live WELL with chronic pain - how to enjoy life, despite the pain. M really learned a lot. And I also learned a lot.

Anyway, hope you can get her into a program ASAP. There are usually waiting lists, but the length depends on the center.

I know it sounds scary to be dealing with one more thing, but it's really actually GOOD news that Stelara is working for Caitlyn. Hang in there!
 
Last edited:
Grace also went to an impatient rehab. She actually ended up in a wheelchair and bedridden for months.
I get the tired feeling, Kim.
I was there also.
But the pain program was the best and its now the same doc that heads her team. He is the one the dx EDS.
They sadly see allot of patients with eds.
If your girl has it, it might be a good place.
AMPS and EDS often go hand in hand.
 
How is Caitlin?

I wish I lived in your city so I could come give you a break for a nap or whatever you need. Or maybe even attempt to help homeschool your other kids for you one day? 😊

Sorry. This has to turn around for her and you.
 
Hi Optimistic,
She is not doing great but the good news is we have an appt already for the eval for the pain program, they are moving on it very fast. All her doctors are working together to her her in to it which is nice. After the eval they said it will take two to four weeks for a date to get her in. Fingers crossed that it all goes smoothly.
 
Good luck Ds started a pain program as well
His rheumo changed things at the same time as when we were to start and Ds GI pain went away
But the program ideas /tools were great and we still use those tools
Especially exercise when he hurts
 
Fingers and toes crossed!! It is a LOT of activity in the beginning but they try really hard to make it fun for the kids. It's about 4 hours of exercise - PT/OT, aqua therapy and some sort of group activity a day. Plus they get a home exercise program which they are supposed to do at night.

M was completely exhausted after the first few days, but it was a "good" exhausted - it had been so long since she was able to function normally and do stuff!

These programs are really incredible. It was life-changing for M.
 
I'm glad she got in.
Do you know if they will let you be there?
Or do you plan on going in the evenings?
Grace was young so I had to be near (actually I would have been anyway).
 
If it's the Cleveland program, parents have to be there. The kiddo will be inpatient (parent cannot stay the night with them) but there are sessions for parents during the day and visiting time every evening.
 
Our appt today with the Cleveland clinic in Ohio at the chronic pain rehab programs did not go well. Firstly they told us they never got her records even when I called last week they said they got them. Then they said due to her low weight and the fact she is on a feeding tube during the day they don’t think she can do the program.
I am so pissed off. We flew there and wasted all that time. Even if they didn’t get her records we filled out an extensive questionnaire so they knew about her weight and the feeding tube before we ever went.
 
We had the same issues - M was too underweight for the program. It took a total of 1.5 years of tube feeding before we were able to get her weight up enough for her to do the program.

It took such a long time because she hadn't been diagnosed with Gastroparesis, so we wasted a lot of time trying an NG tube when she could not tolerate NG feeds.

But once we got her an NJ tube and then a GJ tube, she gained weight quite quickly. We started off with tube feeding during the day, but once she was a healthy weight and had gained enough, we switched to overnight feeds.

She was still on overnight feeds when we did the program.

Her BMI had to be 18.5 before they'd let her do the program - she had to be in the "normal weight" zone. Her BMI was 15 or lower during her worst time, when she was roughly 80 lbs, and there is NO way she could have done the program in that shape. It is a LOT of physical activity - 4 hours a day. The kids are constantly busy and their bodies have to be well enough to keep up.

I would focus on getting weight on her and then revisit the pain program. Any pain program will have similar rules about being underweight.

It was very frustrating for us because we KNEW she needed to do the program, but honestly, I'm glad they made us wait because then M was well enough to successfully complete the program and benefit from it.
 
I haven’t updated on Caitlyn in a bit. She is going to have an evaluation at the program for pain in NJ. There was a lot of back and forth between her doctors and them and they finally decided they think she can do the program.
I am glad they seemed to have reviewed everything really thoroughly.
She has also developed a new issue with her back.
She is scheduled for an MRI next week and had a CT scan that showed a kidney stone but the stone is small and nonobstructing so shouldn’t be causing her ack pain.
The ortho is worried that it could be a disc or something.
Will update more when we have some more answers.
 
Where is the back pain, Kim? Does it get worse with sitting or rest and better with movement? Does she have stiffness, particularly in the morning or after sitting a long time?

I would see a rheumatologist if the ortho cannot figure it out.

Really glad the pain program in NJ will let her do it!! Has she gained any weight yet? It is a LOT of activity and exercise, so it's the best for her to have a "cushion" just in case she loses a few pounds.

We were told M's BMI had to be at least 18.5 or she could not do the program.

While she was doing the program, she began to feel better, eat more and rely less on her tube!
 
Maya,
She has gained two pounds since the tube was placed. The pain is in her lower back and radiates upward. It seems to get worse as the day goes on but she does wake up with it. It hurts worse when moving or standing up.
The ortho said if he doesn’t find anything he will send us to rheum. But I am not sure how much more they can help as she is on Stelara which is already a TNF blocker.
Forgot to add she is also going to start back at aquatherapy and PT.
 
Stelara is IL 12/IL 23
It is not anti tnf blocker
It is hit or miss for SpA
Ds takes Stelara plus mtx plus ivig for his Crohns and arthritis

So she may still have SpA
 
She could certainly have SpA. They can do lots of things - they can add MTX or if she is already on it, up the dose. Same with Stelara - they can up the dose or frequency. They can add Celebrex, though that is risky considering her Crohn's history.

PT and aquatherapy are GREAT and should certainly help with pain. But like with Crohn's, if there is inflammation it needs to be controlled or it will progress. You certainly do not want more spinal or joint involvement.

It doesn't sound like typical SpA but could be. I would get it checked out.

Do they know why she has only gained 2 lbs? My daughter gained a LOT more with the tube - over 25 lbs. Maybe she isn't getting enough calories? Or needs an elemental formula to absorb better?
 
Hi Everyone,
I haven’t updated in a few weeks.
Caitlyn went to be evaluated for the inpatient program at Children’s specialized hospital in NJ.
They at first were hesitant because of her G tube but then they had a long conversation with her pain management doctor who spoke with their head doctor and they called us to have her come for the evaluation.
They accepted her. Now we are just waiting for them to finalize the insurance and have an opening for her.
The facility is beautiful and everyone seems super nice.
Caitlyn really liked it and is excited to do it.
Caitlyn’s back pain is doing better but she is having a lot of pain with eating again and with her G tube feeds.
Hopefully the program will help!!!!
 
Was her back pain ever checked out by a rheumatologist?

Really glad they will take her!! I hope they can get her in quickly.
 
Hi All!
We had a really productive appt with the GI doctor today. He agreed to change her to-a GJ tube. He agreed she should have a visit with an endocrinologist and he is going to try and help in way needed to get Caitlyn into the pain program.
 
WAIT! I thought she was already accepted into the pain program. Did I fall asleep at the switch again?
 
I think because they were waiting for a spot to open up for her in the pain rehab, CIC.
Hopefully the doc can get her in sooner, Kim.
Grace's stay made a world of difference.
 
FW and CIC,
I don’t know if I posted about it there was a hiccup with her acceptance. One of the team members wanted a letter from her GI doctor and psychologist that she doesn’t have an eating disorder because in the past they had two kids with G tubes who has underlying eating disorders.
The doctors and therapists that saw Caitlyn don’t think she has one in any way but this one person on the team is inisiting it is ruled out.
Her GI is writing a letter and so is the psychologist she saw in the hospital.
Just another headache for me to deal with.
 
So confused
Doesn’t she already have a dx if gastroparesis which explains her low weight
Prior to the g tube
Didn’t her weight go up woth formula and gastroparesis meds ...
And her medical records should reflect

If they don’t then you need to chat with her GI asap
 
We have found pain programs tend to be a little crazy about weight...it was VERY frustrating. It took M over a year to gain the weight necessary (but only 4 months or so after she got a tube) and keep it on long enough before they would take her.

It is a lot of exercise and activity and I understand why they are like that, but it was still very frustrating.

We also got the "Why doesn't she just EAT?" question despite a Gastroparesis dx and Crohn's dx :ybatty:.
 
Caitlyn was accepted and started the pain program today, it has been a whirlwind and all happened over the last few days.
 
Good luck Caitlyn!! We are rooting for her!!

M says the first few days were the toughest. Every week got easier and by the last week she did not want to leave!
 
Yes, the first week we were warned there would be a lot of ups and downs.
Than we were warned that week 3 was the hardest on patients and their families
because the pent up feeling and loneliness would hit.
 
Sooo she finished the pain program and was doing really great back at home for almost two weeks. Then suddenly Saturday she began having severe pain again. We found the figure out why but now think it could possibly be cdiff again.
When she was in the rehab they gave her clindamycin because her GJ tube got a skin infection around it.
They didn’t call the GI to consult who would have told them not to give her clindamycin which is the highest risk for cdiff!
 
Oh no--really hope it's not cdiff. I'm glad that the pain program helped, and hopefully the current pain will be short-lived.
 
Ugh! I hope it isn't c diff but at least it would be an explanation...but just ugh!

Have you pursued fecal transplant for the recurrent c diff?
 
Hasn't Caitlyn had a fecal transplant already?? I may be confusing her with someone else but through an NJ tube?

Hope they can get to the bottom of her pain SOON.
 

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Suspected IBD but no one will say that
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Maya142
Maya142

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