Pain, pain, pain

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jjohns23

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Mar 24, 2014
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Hello to everyone who contributes on this forum. I have learned so much here and there is no way to individually thank all of you. Right now we are just looking for something to relieve the stomach and rectal pain. Makayla has had tags for 3 years but first painful flare up came this year. She is is 12 and already wishing she had another life. Currently taking Prednisone and Azathioprine. I'm sure her GI is good but we are not getting the solutions needed. Specifically, removing the tags and relieving the pain. She is in pain day and night. Any suggestions would be appreciated. Much love to all!

Jo
 
:welcome: Hi and welcome! Unfortunately I have no advice for you as we too are in a painful flare. We are on Entocort (different steroid) and Aza as well. Has she had any test done recently? How long has the pain been going on? Maybe a change in her meds is needed...or switching to something different? I know that my son finds warm baths, and heating pads help with his pain for temporary relief...
Good luck and if you find something...let me know!!!
 
I'm so sorry to hear your daughter is struggling. My son has a skin tag. It can be bothersome to him when he is in a flare. Generally, anal skin tags are not removed in those with crohn's disease since it can scar and damage the anal spinchter. If you use the search function and the key word skin tags you can locate more information on this.

Usually getting the CD under control can go a long way to improving the pain of the skin tags.
 
We were also told that removing M's skin tags wasn't a good idea. They bothered her a lot when she was flaring. We did Sitz baths which helped with the pain.
Once we got the disease under control, the skin tags stopped bothering her.
Good luck!
 
Hi Crohniekid, the pain has been going on for over a week but is getting less tolerable for her. She had a colonoscopy about 3 months ago and we went for blood labs last week. We will return to GI on Thursday. Hope WE can endure pain until then. What do the initials DS and DD refer to for your children. Wow, a mom with 5 kids, GOD will bless you. Thank you so much for sharing. Jo
 
To: Clash and Maya142, it is so good to know that there is a consensus among GIs regarding the removal of tags. Now all I have to do is focus on the correct option for medical treatment to get this viscous disease under control. Thanks to you both for the info.
 
DS is darling son
Dd is darling daughter
DH is darling husband

Unfortunately even with the right meds it can take months to a year to get back to baseline .
Things are just not quick in Gi land .
Aza takes 4-6 months to reach therapeutic levels .
Remicade 6 weeks
Humira 3-4 months
Even then the body just starts to heal and that takes a very very long time.

Good luck
 
Love your heart. Hate to see kids hurt.....:ymad:

Have you tried heating pad, warm bath, etc, etc, etc. I have the same frustration when Claire's pain is becoming untolerable.

As everyone said, the key is getting that inflammation under control. I hope you get moving in a direction that helps soon.....

J.
 
According to our ped GI, skin tags are inflammatory tissue and should not be removed. we have been told by our ped gi that they are a sign that the child is not in full remission. I know once my son was in full remission about 6 months after starting Humira both the intractable fissures and skin tags simply vanished. There are two types of skin tags. Ones that are flat and floppy are generally painless unless they've been torn or irritated. The other kind may look like hemorrhoids are are definitely sign that the disease is not under control.

It certainly sounds like she needs to be bumped up to a biologic, preferably Remicade which usually works the fastest and is known for it's effective treatment of perianal disease.

I would be worried about fistulas in the presence of long standing perianal disease and you might want to ask the GI about whether this is a matter of concern.
 
Patricia56, I am so undone right now. I have been babysitting the phone waiting on a return call from the GI and he did not call me back. Have been checking sites for new GI, but based on healthcare provider there are not many to choose from. I will definitely take your suggestions with me on Thursday when we go to appt. Double thanks to you today.
 
AZMOM, I am just learning some of the terminologies used on this site, so forgive me if I don't address everything. We are using the heating pad, warm baths, etc. Thanks for sharing.
 
You might want to check the Doctor Directory to see if anyone from your area is on it. It's one of the menu items across the top of the screen.

Is she going to a pediatric GI? If not I would definitely try to get her to a ped GI. The treatment approach can be very different between adult and ped GI's.

Ask her current GI for a 2nd opinion. They should be perfectly willing to help you get one from another doctor within your plan. Do not worry about hurting their feelings. Most doctors welcome 2nd opinions. If they don't then you probably don't want that person for your doctor.

How long ago was your daughter diagnosed? Besides the scope has she had any recent testing like an MRE or SBFT?

Is her pain limited to her perianal area or is she having pain elsewhere too?

Is she running a fever?
 
Chroniekid, I have not heard back from the GI, but thankfully we have an appointment today. KK is not doing better but now I understand that we have to find a new course of treatment. Your message put a smile on my face this morning and thank GOD you got your girl.
 
Patricia56, kk showed me her bottom after bm in 2010 and both her reg. PED and I thought it was hemorrhoids. It was a surgeon who referred us to Ped GI and after 1st colonoscopy with biops we were given Crohns Diagnosis. Even though no pain at that time GI put her on meds and 6 months later we realized cause of multiple body pains was bad reaction to meds. We took her off and she did well until 11/2013. Tags were unsightly but until then no pain. Now it has been almost constant. For the past several days she now has stomach pains but no fever. The only other test she had was to swallow a camera so they could look in her small intestines. No idea of name. She tried going to school yesterday even though she was walking like a penguin, nurse ended up giving her a wheelchair to get to classes. She is home today hoping new meds or whatever GI provides will give instant relief.
 
Your poor girl. Grace has the tags too and has gotten a lot better since new meds to stop her flare.

Does she have loose stool?
 
Farmwife, she had diarrhea but is now improving. Serious problem is the pain, stinging, and spasms in and around the tags. Have tried Restive cream, hemorrhoid ointment, and Epsom salt in warm water to soothe but to no avail. Crying, shaking, stomach pains, and lack of mobility is taking its toll. Any recommendations, let me know.
 
It sounds like she needs to be on a biologic - remicade is usually the quickest.

Keep us posted and my heart goes out to her. Hang in there and get a 2nd opinion if needed to get her better care.
 
Patricia56, we have appt today with GI and I am anxious to hear what he will suggest as next treatment. Thanks to this forum, I am a little more knowledgeable than I was before and can ask all the right question before making a decision. I have just completed creating a notebook with the history of her medicines/treatment and symptoms. I am so hoping she can get some relief from the pain. Challenge today is getting her into doctor's ofc. May need to use wheelchair. Thanks to you all for helping me get through these last few days.
 
It breaks my heart to hear she might need a wheelchair -- I know what it's like to be rendered immobile from dealing with this illness. Also agreeing with everyone else on here about Biologics! I hope she can get on them and get some help. Remicade was amazing when I was on it, and within hours I could feel and see the difference in my body from it.
 
Crohniekid, Maya142, My Little Penguin, AZMOM, Farmwife, Patricia56 and the Ocean: Back from GI ofc and feeling like maybe we are on right track. Doc brought up Remicade as next option and we were all on the same page. Have to get PPD Test and Ct Scan first but we are on the path. Hoping real relief is in GOD'S plan.
 
Glad to hear you have a plan! Remicade has been a miracle drug for many, hope it gets your girl out of pain!
 
Well I finally got the call today and we are on the calendar for the Remicade infusion this Wednesday. All I know is to take some reading materials to occupy our time. If any of you would like to share your experiences or make suggestions on things to do or questions to ask the GI, SPEAK NOW!! I am so praying this is a lifetime solution for her.
 
I'm so happy for you!! At the clinic where I would get my infusions, a lot of people brought their laptops. I would often listen to my iPhone or audio books, or bring something to read. I also brought a blanket because I would often fall asleep during my infusions.

For GI recommendations, I would just ask if he thinks it would be a good idea to take an antihistamine before the infusion, which they would usually administer via IV beforehand. :)
 
Lots of fluids the day before to plump up her veins for the poke. We use a j-tip to numb before the poke, sometimes Emla creme but that takes an extra 30 minutes to work. My son gets pre-meds at the clinic - Tylenol and Benedryl. He doesn't like taking the Tylenol with water so we bring along an Ensure or Boost. To stay busy, he usually brings his iPad and just plays video games the whole time. Bring snacks, books, stuff to do. Wear a short sleeved shirt. With the first infusion, the nurse tends to hover and monitor a lot, which is good. I also keep track in my notes which arm gets poked so we're sure to use the other arm next time. Mmm... that's about it. It's always been pretty uneventful for us. Sometimes he's tired after, sometimes he's ready to conquer the world.

Good luck!
 
Thanks to all of you for your support and Mehita, I am so appreciative of all you provided. We will surely be prepared when we get there. Great tip about the water.
 
Remicade treatment went as scheduled on last Wednesday. Makayla slept through the whole procedure. Facility and staff were exceptional. We had procedure done at St. Joseph's Children's Outpatient Facility. Within 2 days, I could tell that Makayla was feeling better. She actually cleaned her room. That had not been possible for so many weeks. Pain is reduced but not sure if that is from the Remicade or continued use of Prednisone. GI also added mineral oil daily to help ease the pain of BMs. Next treatment is May 1. Now that there is some relief to the pain, I really need some clues on getting a proper nutritional guide. Hard to get pre-teens to eat anything healthy.

Jo
 
Glad you're seeing improvement already! :)

There is a diet section here in the Parents's forum as well as a Diet, fitness, Supplement subforum.

A number of parents have tried various diets or alterations to diets and some have found some success; offhand, Twiggy and crohnsinct have altered their children's diets..., there are others, just can't think of them now. :)

Many here do have their children on supplemental EN (enteral nutrition) to ensure their kids are getting the necessary nutrition. Again, lots of info throughout the Parents' section on EN.
 
jjohns23 said:
Remicade treatment went as scheduled on last Wednesday. Makayla slept through the whole procedure. Facility and staff were exceptional. We had procedure done at St. Joseph's Children's Outpatient Facility. Within 2 days, I could tell that Makayla was feeling better. She actually cleaned her room. That had not been possible for so many weeks. Pain is reduced but not sure if that is from the Remicade or continued use of Prednisone. GI also added mineral oil daily to help ease the pain of BMs. Next treatment is May 1. Now that there is some relief to the pain, I really need some clues on getting a proper nutritional guide. Hard to get pre-teens to eat anything healthy.

Jo
Click to expand...

I'm so glad to hear that she's feeling better! I'm sure that must be a huge relief to you. :hug:

As for nutrition: is it possible to get her GI to refer her to a dietitian? Mine was able to do that for me.
 
Thanks for the update Jo :) and so fab to hear that Makayla is feeling better after the infusion! :dusty: I hope things just keep getting better from here on in. Good luck!

Dusty. xxx
 

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