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Chrons Ma

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Apr 17, 2013
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Hi. Chrons Ma back after a long hiatus, still in the role of caring for my son, now 24. Sadly, a total colectomy last June following a sustained period of sepsis that almost cost him his life.

2 questions please 1. discharge from the rectal stump. What is everyones experience with this please ? 1 year on and bloody discharge is becoming more frequent (2-3 times per day). Gastro seems unconcerned with increased frequency. This said, is proceeding to a endoscopy to further investigate. Sons health in unimproved with quality of life poor (not working, no significant socialization/relationships), with pain, nausea etc much the same, if not in fact, averagely worse 2. post surgical pain. Son essentially had 2 procedures 4 days apart. 1st was done laproscopically. 4 days on. stoma strangled and an open procedure followed to milk the gut (as he had started eating solid food) and re-fashion the stoma. We are being told that some patients experience a heightened sensitivity in the gut lining with multiple abdominal surgeries. He is scheduled for specialized radiological intervention, where they will inject steroids and local anaesthetic in and around the troublesome area

I would really appreciate any feedback from anyone who has had similar experiences. Isolation and poor understanding remains by others regarding our continued woes. Thank you all.
 
Wow! You two have certainly been through a lot. I don't think there are many parents on here if kids who have had colectomies or a stoma temporary or otherwise. I think you will get more advice in the adult section either under the general IBD section or in the surgery sub forum.

Sorry I can't be if more assistance but my daughter is facing possible colectomy and has Crohns. Our plan is to leave as much if the rectum as possible for a possible connection if the small bowel to rectum. I am curious if that is your plan as well.
 
crohnsinct said:
Wow! You two have certainly been through a lot. I don't think there are many parents on here if kids who have had colectomies or a stoma temporary or otherwise. I think you will get more advice in the adult section either under the general IBD section or in the surgery sub forum.

Sorry I can't be if more assistance but my daughter is facing possible colectomy and has Crohns. Our plan is to leave as much if the rectum as possible for a possible connection if the small bowel to rectum. I am curious if that is your plan as well.
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Son (has)had fistulating crohns, with the rectum and anus being the problem area of main concern regarding fistulas. Under these circumstances, normally the rectum would be removed to eliminate recurrence of disease. Recommendation however was to leave the rectum, as removal of this lengthened the surgery time. Going into a major from a basis of sepsis, this was a big consideration. Reconnection was also a motivating factor, but less so, than the possibility of nerve damage affecting sexual function in an almost 24 year old male. Thank you for the heads up of where best to post, and all the best for you, your daughter and your family. Crohns casts a very long shadow
 
My daughter was also septic but luckily after two hospital admits we got it under control. Her problem area is also her rectum but more from an inflammatory standpoint rather than fistulizing. Her entire colon is affected right now and I was surprised to hear that the surgeon felt removal of just the colon was enough to control her disease given the rectum is her problem spot. I guess if we get to that point, I can quiz him more.

We are trying the triple antibiotic treatment (after having tried vancomycin in patient, and IV zosyn for the sepsis) now in addition to steroids and hoping that Entyvi kicks in at some point soon.

Good luck with posting in the adult forum. I will follow your thread over there as well.
 
Removal of the rectum adds to theatre time, and given sons fragile state (was line call sepsis vs septic shock) and the implications of sexual function being compromised it was decided to leave the rectum. I think the distant possibility of a re-join was also part of the consideration, should a good remission point ever be reached. I was completely unaware (duh!), that there were implications for a males sexual function should the rectum be removed.

Given where we are now 1year on, I wonder if the right call was made. The rectum remains an issue - we will not know how much of an issue until he has his endoscopy. The thought of further surgery is quite traumatizing given what we have been through already. Hindsight is a wonderful thing, and I guess we can only make the best decision at any one time, given the information we have at that time. Adult sons call at the end of the day - his body, his life.
 
my little penguin said:
What meds has he tried ?
Remicade does well with the rectum
Humira ? Stelara ?
Click to expand...
Humira was trialled initially, but he didn't do well on that. He has been (prior to surgery) and remains on Remicade. 6MP was added 4 months ago to try to pull the handbrake on activity in the rectum. It appears it hasn't worked. I will post again to update once the endoscopy has been completed
 
Has he tried anything topical for his rectum - suppositories or enemas? Those might help with the bloody discharge.

It also might be worth getting a second opinion if his quality of life is so poor. Is he seeing a pain management doctor? If they can get his pain under control, that might improve his quality of life greatly.
 
Colifoam enema - this has not helped with rectal discharge issue. 2 pain teams have been involved over the last year in his care. We have engaged a new gastro who will be directing the next 2 investigations
 
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Sounds like a very difficult situation. I am so sorry for everything he is going through, especially when you thought colectomy would fix the issues.

Fwiw my daughter has extensive rectal disease. She also used foams and it did nothing. She used enemas and nothing. The only rectal suppository that helps her are steroid suppositories.

Good luck with the scope. I hope it provides a clear path forward.

Has he had his Remicade levels checked?
 
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I was in a similar state when I was middle aged after living decades with fistulizing rectal problems. I was septic at the time and spent two months in hospital fighting infection before I had surgery to remove a length of my colon appendix and small bowel that left me with a colostomy which I still have 20 years later. I too have rectal discharge on a regular bases that varies from clear fluids to down right ugly blood. When I bleed I may have to discharge the bloody mucus several times a day, and when its really bad I had to take iron tablets. I tried various treatments, including Remicade and none of them have worked very well. Remicade went against me after the third infustion.
What has worked for me has been the Mesalamine Salofalk enemas to keep the rectal area inflammation down. I take one every second or third day, but in a flare I will take one daily at bed time.
I found controling stress and diet helps a lot in taming the flares. For the past year and a half I have had very good results by taking a teaspoon of turmeric found in the seasoning section of the grocery store and mix it into a glass of cold water, and taking it on an empty stomach between breakfast and lunch. For me this has provided the best remmission I ever have had.
Its a very fine line between feeling well or poor, finding the right balance took some time, years of trial and error.
 
Thank you for this information. I appreciate it.

Like yourself, son has found stress and diet to be big contributing factors
 
crohnsinct said:
Do you know what they are?
Click to expand...
Fistulas (pre-colectomy) have all been located in the rectum. Some terminated externally in the anal area, most did not. Surgeon feels that current symptoms could definitely point to active disease (nausea, vomiting, increased bloody mucosal discharge, general lethargy and unwellness, ongoing abdominal pain aside). MRI imaging in May showed inflammation in the rectal stump. Gastro believes nausea/vomiting is all related to pain with rectal discharge simply being reversion. The endoscopy will be the definitive answer as to what is really happening.

I am starting to wonder if this is gastroparesis. Son has wondered also. I guess we can suggest it as a DDX if we draw a blank with the next 2 investigations/procedures. I know most Drs detest you telling them their business, but when you are drawing blanks, it is natural to search for potential answers elsewhere huh ?
 
Sorry but that is way too low! True that technically the literature says 2-5 but it has been time and time again proven that, this level is way too low for many people. To put it in perspective there are papers, docs who are presenting at conferences etc that say a level of 8-12 is ideal. I would be willing to bet he just needs more drug and a higher trough level to get anywhere near full remission in that rectum. Especially since the rectum is one of the hardest places to heal so it might just need more drug. I am not a doc...just a mom...this is just my opinion and incidentally the opinion of 2 pediatric GI's that daughters have seen.
 
Thanks for that. He has been "overdosed" as well....
Gastro happy with that, but not prepared to go further now than the 8 week cycle ?
That didn't work which is why they have thrown in the 6MP to the mix, which also hasn't worked. I will bear what you have said in mind.

Im just confused, low on resilience and wanting some answers and a plan that results in forward progress for my son
 
I hear ya sista!

He is on an every 8 week schedule? There is definitely a lot of room to improve his therapy. Our current GI told us that only 10% of patients on Remicade are able to stay at an 8 week interval and still respond to dosing. I think your son might improve his response by just being infused a little more often.

When you say he was overdosed are you saying his Remicade levels were higher and he still didn't respond? How high were they and for how long?

it makes sense that once they removed the colon they went conservative on dosing. That is actually our plan with my daughter even if we left the rectum. BUT the rectum is notoriously hard to bring in line and has also been my daughter's problem area so we have been told that drug dosing may not change much.

Hang in there mama and keep asking the questions and keep them thinking! You are doing a great job!
 
You may want to investigate with your doctor the Mesalamine Salofalk enema treatment in tandem with the Remicade. The enema treatment worked well to knock down inflammation and promote healing in the rectal area.
 
Just read all this... re the remicade levels. My son was tested a couple of years ago?? and his level came back at ~12. I'd heard that 5-8 was a good level and had asked his GI if we could move his infusion schedule out to 7 weeks instead 6 weeks (given he was above the 5-8 level). His GI said he was quite happy with 12 and that he has patients with trough levels as high as 20. And he did not want to extend my son's schedule to every 7 weeks.

Also, my son started at every 8 weeks. After the first full 8 week cycle, levels were tested and he was at close to 0 and he was moved to every 6 weeks. It's not been approx. 5-6 years and GI hasn't changed his schedule.

I'm so sorry you and your son have been struggling so hard and for so long. I would also question your son's current remicade levels and infusion schedule. Clearly what's being done now is not working 100%, what harm would there be in increasing his dose or frequency?
 
Son schedule is 5mg/kg (was 10mg prior to surgery). 2 week intervals for 4 doses, monthly intervals for 4 doses, 6 weekly for 2 doses. Next dose is at 8 weeks.

Thanks so much for your positive reinforcement. Seriously appreciated !
 
Isnt this interesting ? What part of the world are you posting from ? Maybe because this is New Zealand, everything here is upside down and back to front. One would have thought protocol for this would be worldwide ????
 
I've never heard of scheduling like that?? Normally, I hear of loading doses at the beginning... it's been so many years, I've forgotten exactly but I think it was 1st dose, next one 2 weeks later(??), next one a month later and then onto 8 week cycle. (Someone else may come along and correct me because it has been a long time!) It was at his first 8 week infusion that he was tested just before infusion to see what his levels were. As they were close to 0, he was put on a 6 week cycle right away.

It almost sounds like your son has had a long loading dose period?? Perhaps the 3.7 'number' is because levels/units are measured differently in NZ??

But, I think it's a valid question to ask his GI. If he is still having problems, why is his medication being reduced?
 
Hi there, the loading doses in Canada and U.S. are first loading dose, two weeks later is 2nd loading dose, and 4 weeks after that is 3rd loading dose, and then 8 weeks after that. My son never made it to 8 weeks and was put on 4 weeks right away, and then increased dose from 5 mg to 10 mg ever 4 weeks.
 
Yep that’s the loading dose Ds had ^^^^^
Never made it to the full 8 week dosing
They switched him to 7.5 mg/kg every 6 weeks

Really don’t understand the dosing /schedule your son has .
 
We were given a verbal explanation of the "overdose" loading schedule which has not been detailed in any correspondence which I have just reviewed. Sorry cant help anyone nor myself out there. Many questions to be asked for sure.
 
Crohns can be very frustrating! Every turn leads to more questions! :oops: It can take time to find the right treatment plan. But, I am sorry it's taking so long for your son. :(

Perhaps because of the presentation of your son's disease, his GI tried the 'overdosing' schedule as an attempt to get as much remicade into his body as possible and kickstart it's impact. But, I think the question remains that as he's not in remission yet, why reduce his dosage now? I'm not a doctor but I would think, given the aggressive start, your son should stay on a 'typical' but higher dose. There are many kids here who are having infusions every 4 weeks and/or dosages as high as 10 mg/kg. You said his levels were tested at every infusion, do you have the other levels? Was his remicade level ever higher than 3.17?

My son has never used 6MP so I don't have any experience but, perhaps it takes more than 4 months to have an impact? I know some meds can take up to 6 months to reach therapeutic levels.

Has your son's GI discussed a new treatment plan? It may be that your son's GI is planning to switch him to a different biologic??
 

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