I am looking for any shred of hope. I was diagnosed with Crohns when I was 32 years old. Everything about it was untypical. I did not have diarrhea. No bloody stools. The only symptom that I ever had was abdominal pain/spasms and constipation. When I was finally diagnosed (years later, after every test in the world) I was in complete denial because I never had any real Crohns symptoms or complications. After giving in and finally trying methotrexate, my pain went away in 4 weeks (the exact amount of time I was told that it would kick in) so I finally accepted that I might have Crohns. I haven't had any problems or flares since starting methotrexate over 6 years ago. I wish my story ended there. In March of 2014 my 14 year old son started having bloody stools. After colonoscopy/biopsies he was diagnosed with UC. I was obviously afraid it could be Crohns because I had it, but his paternal grandfather suffered with severe UC and none of the biopsies showed Crohns, so I thought maybe it was possible it was UC. All of the typical UC meds were tried and failed. He was receiving the highest possible dose of Remicade infusions every 4 weeks. For 8 months he was in constant pain, continued to have large amounts of blood in every stool, having 20+ stools per day, was losing weight, had no energy, suffered migraines from the Remicade, was in and out of the hospital, had multiple scopes, etc. His small bowel and ileum were never affected and none of the biopsies ever showed granulomas so they were pretty positive it was UC. I asked his docs if we could try methotrexate (prior to starting Remicade because Remicade scared me) because it worked so well for me, but they said methotrexate is not a good treatment for UC, and takes too long to kick in and just simply was not a good option, that Remicade was stronger and the better option. In December total colectomy w/ j-pouch was suggested. A cure. How wonderful? No more pain, no more sleepless nights in the bathroom, no more meds, no more hospital stays or missing school. No more IV's. No more migraines. No more tests/procedures. The thought of a cure was so exciting and promising. He had his first surgery in December. After pathology checked the entire colon and still found no Crohns we were ecstatic. The 3rd surgery was completed in May. He accepted his new scars and handled all 3 surgeries so well, all he wanted was to feel better. Over the last few months since the surgery, he failed to gain weight, he was losing weight. He had no appetite and would eat very minimal amounts of food. I kept taking him to his appointments and expressing concern to his MD's. They started him on Imodium, hoping that slowing down his number of stools would help with weight gain. He continued to have 10-15 BM's per day. On Sunday he began having abdominal pain and nausea. I took him to the ER and he was admitted and scheduled for an endo/pouchoscopy to see if he had pouchitis. Ok, pouchitis, we could handle that. On Tues he had the pouchoscopy, when they brought out the pictures of his pouch I was devastated to see ulcers. I wasn't prepared for what the doc said next..."this might be Crohns". They kept saying it might still be pouchitis, that sometimes there could be ulcers with pouchitis and that we wouldn't know until the biopsies came back. He also has inflammation in his stomach. On Weds he had a MRE to see if the small bowel was affected. We were told if the small bowel was affected that it was definitely Crohns. On Thurs the biopsies came back...the pathologist said he found granulomas...classic Crohns finding. The MRE determined the small bowel is still not affected (thank God). The pathologist said that the stomach biopsies looked like "the start of granulomas". He is down to 86 pounds and obviously malnourished. A feeding tube was put in and he is receiving enteral feedings. Of course my sons biggest fear at this point is permanent ileostomy. He is 15 years old. But my biggest fear is WILL HE BE OK? If Remicade and all of the other multiple medications didn't work for him before, what is going to happen now? What if no medication works? I need someone, anyone, to please tell me that my son is going to be ok. I know no one has a crystal ball, but I just need some ounce of hope. I have seen many stories on here of this happening to other people but they are all from a few years ago. Is there anyone out there currently with a j-pouch and Crohns doing well? Anyone? Right now there is no real plan. We are waiting to hear back from Dr. Shen at Cleveland Clinic to see if he will see my son. He is currently on Flagyl, tube feeds and had his 1st methotrexate shot on Friday. (yes...he is NOW on methotrexate...3 surgeries later). I appreciate any advice from anyone who is going thru this. Thank you.
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I'm sorry for all this worry you have to endure and for what your son is dealing with. I have two boys 13 and 14 and I worry quite often about them as UC is in my family.
I have an acquaintance who I met in person last summer through this site's Facebook page. She was dx'ed with crohns after her j pouch surgery when before the surgery it all pointed to UC. She is on Humira and doing very well. I guess it's been about two years for her now....maybe longer but she hasn't had any issues. There are others as well. The worrisome thing is it seems this is happening more and more. Not sure what's going on but I believe it's more complicated than just saying someone's UC was misdiagnosed.
At at this point I suppose it doesn't matter what it's labeled as long as you can find a treatment for him that works. You mentioned he was on Remicade.....has he ever been on Humira? He will be in excellent hands at the CC.
Many people do fine with Crohn's and J-pouches. The pouch failure rate is higher with Crohn's, but it's usually better to address what you're actually facing rather than the worst thing that might happen. Crohn's can sometimes be very mild indeed, especially if it's being treated attentively.
Just because of ulcers, it doesn't mean it's crohn's of the pouch, I suggest you to find a good patologist and send him the biopsy. Crohns and colitis are different entities but many times endoscopist and gastroenterologist use deliberately one word instead of the other.
Ulcers can and are a sign of pouchitis, not only crohn's.
In my opinion, your son doesn't have fistula nor granuloma, and they should check the deepness of the disease (and many other features) to surely say that's crohn's, Saying this from ulcers in the pouch, is in my opinion very dumb.
Problem, is that your son has a problem with his pouch, so he's risking the ileostomy no matter if it's crohn's or pouchitis. I'd suggest to try the entire course of pouchitis therapies (first treatment I suggest and should be done, is at least 15 days metronidazole in conjuction with ciprofloxacine) plus VSL3, and see what's happening.
Please don't be scared by a word, Crohn's is a condition, people can live good with Crohn's of the pouch if treated (you will think about this if antibiotics fail, there is a steroid called budesonide which is not sistemic and go straight to the pouch to remove inflammation: this is the second line treatment if antibiotics fail and can be used instead of biologics.
If budesonide plus antibiotics fail, they will be able to opt for Humira, Cimzia or Methotrexate, or Azatioprina (I'd try biologics first because they are well tolerated, and I think you must not be so scared by them, it's a drug like others...), but you will think to this stage following the first course of treatments.
In the meanwhile, the kid should eat a clean diet (no junk food, snacks, at all), no fiber, no gluten (there are gluten free products for celiacs, you can take plenty of rice), absolutely NO dairy, banana should substitute sweets and snacks (they are a snack in their own), plenty of meats and fish (hoping your son is not vegetarian). The diet is in my opinion a general rule not to be followed strictly, but fibers and fermenting foods should in my opinion be eliminated at all.
Also, psycological aspects are important, encorauge the son to go to school, outside home, use tricks to use outside bathrooms. The disease must not own your son, even if I know it's not easy, but, you see, the worst scenario is a ileostomy but I think ileostomy is not the end of the world, I agree it's not good for a son, but there are worst tragedy which all of us know...
Thank you both for the positive feedback. I am not coping well, so to hear anything positive is really good for me right now. So she still has her j-pouch? No, he never tried Humira. From what I remember they said it was better to try Remicade first, something to do with antibodies.... but if methotrexate fails that is definitely at the top of my list to try next, unless CC convinces me otherwise. Very anxious to have a consultation there.
Ask to doctor Shen if it's right to start Methotrexate. In my opinion, NOT.
You should, at least see if it's crohn's by a biopsy check (made by an EXPERT and not the first pathologist they find, who will be influenced by the endoscopist doubt and will be tempted not to contradict).
Apart this, Rafton (Budesonide) is a well tolerated, effective treatment for both Crohns and Pouchitis, and it should be attempted BEFORE biologics and antisuppressant, to induce remission. Moreover he didn't prescribed vsl-3 but vsl-3 are known to greatly help the pouch.
The treatment have to be:
2 antibiotics for between 15 and 30 days (metronidazole, and ciprofloxacine)
1 topical local steroid (Budesonide) for 3 - 6 months, starting from highest dosage (9mg)
vsl 3 two times a day, for the entire course of treatment and then.
THIS SHOULD BE DONE TO STAY BETTER no matter the diagnosis which is just a word. As a matter of fact the treatment is THE SAME for pouchitis and crohns.
Adjuvant is the diet I mentioned.
I am sure that budesonide can adjust this bout of inflammation, but just the antibiotics can. The son must help with a clean diet (plenty of bananas!) positive thinking which must translate to daily activity, school, happiness, sport, think that it's not the end of the world.
You could encourage him to become volunteer for help of paraplegic people (sorry for the english I'm foreign), then istantly this so called horrible disease will become a joke...
lkh... The pathologist did confirm granulomas in his pouch and possibly the start of granulomas in his stomach. I requested that the slides be sent to CC for a second opinion. Im just curious, why do you say NO to methotrexate? They already gave him his first dose in the hospital. And he is on metronidazole.
The doc who performed the pouchoscopy is his GI doc who has been treating him since day one, he was hoping for a pouchitis diagnosis not Crohns.
Finding the granulomas is what's most convincing for a Crohn's diagnosis. The diagnosis doesn't signify any particular severity or disease course, but it does help choose treatments shown to be most effective in those circumstances. You're on the road to very knowledgable advice, and perhaps an easier course than you fear. Good luck!
Sorry op I missed the detail of granuloma.
Granulomas are known to settle also when there's a bruise (operatory) and metal grafs, so the granulomas can also be a consequence of the surgery.
In any case, it's not a great problem that he started the methotrexate, just it's quite useless if it's pouchitis (at least, it's not used);
And for me even if it's crohns' of the pouch it was better the entocort/budesonide. But if he started metho and will be good using this drug, well, he can continue it.
useful article for everyone who are said that colitis was transformed in crohns: http://www.ncbi.nlm.nih.gov/pubmed/9351572
Sorry but what you report the pathologist said is not clear to me.
How does he find granuloma in the stomach? The pouchoscopy can go over the pouch and latest part of ileum, not, the stomach. and the pathologist and endoscopist said (if I didn't translate wrong) no evidence of disease in the prepouch- ileum section. So, the three factor that could lead to Crohn's:
- fistula not present
- prepouch disease not present
- granuloma present
I think that just granuloma is not entirelly to be called crohn's. There are several features that should be checked, and I suggest to take the biopsy and to check by another pathologist. Article on ibd classification: http://www.naspghan.org/files/...assification2007.pdf
I forgot to add that his paternal grandfather was just re-diagnosed with Crohns 2 weeks ago. Just wishing I would have known that a few months ago 
Stress obviously plays a huge role with flare-ups, because I have been symptom free for 6 years and now I am having the same painful spasms that I was having when I was diagnosed.
I'm sorry. He had an endoscopy (showed stomach inflammation and possible granulomas), pouchoscopy (inflammation and ulcerations throughout the pouch, and one in the duodenum) and MRE (hyperenhancement of pouch and neorectum).
Ok! Sorry, I misunderstood. And well all those extra-pouch inflammation means definitely Crohns...
So you need to treat it. You can see in the following way: if the crohns was ruled in before surgery, your son probably already had permanent ileo; now he has a pouch and a duty: to stay well! I'm sure you will find the right treatment.. and above all translate all the positive thinking in right outcome, if you start the game thinking you lost and thinking to the worst scenario, then all the ordinary choices will be negative and this will negatively affect the life (vicious cyrcle)...
Did they rule out celiachy? If duodem is involved..
Thank you. I hate hate hate that he has gone thru those 2 extra painful surgeries and now might need a 4th, but if he can find a way to keep that j-pouch for awhile then I guess it was worth the struggle. As for Celiac, they did a blood test to rule that out twice.
Hi,
I am not going to weigh in on the pouch, UC, ganulomas or surgeries but talk about your son for a minute...first off, I am so sorry that he is going through all of this...unfair does not even begin to touch it.
I was a sick kid, since birth and had my first colostomy at 2...so I am a bit experienced in this (it has been 53yrs since my 1st surgery)...
Your son is a kid...a sick kid but a kid anyway. He is not a patient, an illness or a disease but an adolecent who needs to grow up feeling "normal" what ever that is these days.
This disease takes all the "normal" out of life...you can not eat normally, go to the bathroom normally or go out and play ball, have fun or party with friends so it is much harder for a parent to keep things normal (inside or outside of the hospital) for their child.
He needs his friends right now...lots of them but mostly his best friend if he has one, if not then his favorite cousin or someone that He can talk to and share his fears, worries and terrors with...you are a dad, not a teenager, so you "Would not understand".
If he has no one that close to him then he needs a dog (cat, bird...). Friends and animals are the best way to heal because he will one day heal and be fine but his mind needs to grow and heal too...
So does his education...do Not neglect it. I had a tutor in the hospital, kept my grades up and even went way beyond what the other kids in school were learning (private tutors can be supplied by the hospital or school).
Doctors and hospitals forget that kids are kids so they treat them like patients which is not a good thing...bring them down to his level...make then speak directly to Him...it is his body, his disease, his pain....why should he be ignored? Let him ask questions (even silly ones) and make the doctor answer them. Do not allow medical staff to speak over his head.
Organize movie night at home with his friends...make arrangements for events in the hospital...brithdays, game night etc and invite his best friends to join...do not exclude them from his life...he needs them more than ever now.
You are in good hands, things will get better and he will survive...make sure that he lives while surviiving.
You are a great dad...
Sharon
My GI counsels those going for a J pouch that about 50% will have *some* complication during the lifetime of their pouch. He said that they no longer tell people a J pouch is a "cure." Older pouches are coming to him with "new" IBD issues. I had 20 years post op with no issues. I do now, at 24 years. I now have a blurrier diagnosis.
When I had the surgery, it was still fairly new, and long term complications were unknown.
I'm sorry his issues started so soon, however as everyone is saying above, it's not the end of the world. My daughter has indeterminate colitis (everyone thought it surely was UC, but skip lesions in her large bowel make them think Crohn's). She still has her large bowel, and is doing excellently on Humira and methotrexate. There are always new meds and new combinations coming out. Plus, many do do better with an ileostomy. I know I could live with one again if I had to.
My entire family fights autoimmune issues every day... Daughter along with her colitis has arthritis, I'm on Humira and another steroid taper for my stupid fistula, and hubby has psoriatic arthritis and failed Enbrel and is now on Humira too. We need a family pack! I feel your pain, hang in there.
When I had the surgery, it was still fairly new, and long term complications were unknown.
I'm sorry his issues started so soon, however as everyone is saying above, it's not the end of the world. My daughter has indeterminate colitis (everyone thought it surely was UC, but skip lesions in her large bowel make them think Crohn's). She still has her large bowel, and is doing excellently on Humira and methotrexate. There are always new meds and new combinations coming out. Plus, many do do better with an ileostomy. I know I could live with one again if I had to.
My entire family fights autoimmune issues every day... Daughter along with her colitis has arthritis, I'm on Humira and another steroid taper for my stupid fistula, and hubby has psoriatic arthritis and failed Enbrel and is now on Humira too. We need a family pack! I feel your pain, hang in there.
Sharon, I loved your post! Really massive dosage of truth in your words...
Thank you Sharon and Rachel. I am actually his mom (I didn't realize my avatar was a guy lol). He did really well with school last year, even with 3 surgeries and new ileostomy, it was his first year of high school so I was very worried, but he was committed to passing and did a great job staying on track. He is due to start 10th grade in one week. He has the NJ in, which he can't hide like the ileostomy, and he has been going back and forth with what he wants to do. He was looking forward to going back to school all summer and now he keeps saying that he might want to do cyber school until the NJ is out because he doesn't like how it looks. His older sister and I had him convinced that he would be fine with it, because he has been in this school district since Kindergarten and everyone knows him, and he agreed to try it. Then I took him to the mall today to get school clothes and the stares that he got from the teenagers were completely heartbreaking. I could see the embarrassment on his face. So now I don't know what he will do. He is in denial about how long the NJ will be in. He is 5'5" and only 86 pounds. He got the NJ about a week ago and still hasn't gained any weight. I think he will have it for at least 4-5 months...and maybe Im in denial...maybe longer. We bought some flesh colored bandaids today to cover up the white tape that they have taped to his face, to try to conceal it a little bit better. He seems to like that better.
He is still hanging out with his friends, but he doesn't talk about his illness with them. I wish he could find a friend who is going thru this too but he refuses to get on the support group sites. He's very withdrawn and I can tell he is getting depressed, as expected.
Sorry to go on and on. I am just scared out of my mind that he won't start gaining weight or responding to treatment. I have never ever been this scared in my entire life. I have been thru a lot in my life and usually handle everything thrown my way very well but this broke me. I am truly broken.
You probably already know that there is a stronger familial association with Crohn's than UC, and while this change in diagnosis is no doubt a huge disappointment, it is not too surprising.
One thing you may want to focus on is the fact that the original UC diagnosis allowed your son to avoid the ileostomy, at least for now. It may not be a top priority for you (for good reason), but body image is a big deal for teens. The colon had to go regardless, so don't think the surgeries were for nothing. Now that Crohn's is more clearly the diagnosis, more treatment options are available. They don't just remove the pouch if there is Crohn's. The goal is to preserve all small bowel.
I do know what it is like to have multiple family members with IBD. Besides myself, my husband and both sons have UC. One son has pancolitis, like me. My husband and other son have milder forms of left sided colitis. So far, I am the only one to require colectomy. I feel very blessed that the others responded so well to meds. But, I know the future is uncertain.
It is OK that your son is feeling depressed and withdrawn, for now. He has a lot to process and has had to grow up a lot while his pals were out having fun. Validate his feelings as being appropriate, by acknowledging them. You know your son best, so you'll know when it is time to consider therapy. Everyone copes in their own way. Hopefully, his meds will kick in soon and he will have something to look forward to. Find joy in little things each day. Point out that Crohn's is a manageable disease. I was 15 when diagnosed with UC. I just tried to live as normal a life as I could. Sometimes it would knock me on my butt, but it made me more mature and appreciative of the many good things in life.
Take care and kudos to you for being a great mom!
Jan 
Ooops...didn't realise that you were the Mom...you make a really exceptional and compassionate dad!
Jan make some really good points...you know him best...
There are different types of depression (in my book...this is not official and I am Not a medical professional)...situational is the kind that appears when there is a painful or stressful situation (illness, surgeries, heartbreak...) and disappears when the situation changes...that is the "good kind" because once your son is healed things should improve rapidly (beware of PTSD...it hits out of nowhere, is triggered by the strangest things and takes time to get control over...keep a tight watch on him)
His mood like his health is going to be very variable. It will ebb and flow constantly and you will not always know why. He is an adolecent after all!
Keep him busy and active within limits...he is going to be embarassed and uncomfortable with the NG tube ...so if he wants to 'cut and run' from a public place because he feels uncomfortable then let him.
You are going to need a ton of courage to get through this...but you will and so will he...
Keep up the good fight
Sharon
Just a thought. If your son is going to be on tube feedings for a prolonged period, ask about a G-tube (gastostomy tube). It is a minor surgical procedure where they place the feeding tube through the abdomen into the stomach. No irritating NG tube, and nothing visible. It all depends on how long it will be needed. 86 pounds for a teen is not good. I got down to 89 with UC, but was able to gain once in remission.
Again, I totally get the body image thing and would never expect a kid to attend school with a feeding tube hanging out of his nose. It is hard enough to concentrate without the stupid stares and comments from other kids.
Jan
Agree with the G tube or G/J placed in the abdomen. Not a tough procedure at all, and he could hide it under his shirt. They also do those "buttons" in kids, for tube feeds, as well. Might be a consideration, since it's going to be months of feeds, not just weeks.
My son was at age 13 was on TPN for 6 months to help him gain weight. We connected a line in his arm to a 12 hour bag. This allowed him to go to school during this time. This was after his J pouch surgeries and he was failing to thrive. Ultimately, now age 15, he has ended up on humira, methotextrate and daily rifaximin and keeps a pretty "clean" diet. I think the diet does play a role in helping. We still work hard to help him gain weight in a healthy way but he is doing well, all things considered. I don't know if TPN is a possibility for your son and I also don't know the pros and cons of that versus the other methods. Wishing you strength and good luck.
Very much appreciate everyone's advice and input! Thank God for websites like this. I keep trying to tell myself that at least he didn't go straight to a perm ileo and maybe has a chance to keep the j-pouch, if even for awhile. I originally opted for TPN because I felt that option was better for cosmetic reasons but several docs advised against it because they said it can cause liver failure and that enteral feedings are the best option. I didn't want to risk any other medical problems so I took their advice. As for the g-tube, I think they will suggest it if they decide that he needs to be on tube feeds longer than expected, I just don't know if that's an option for him because they found inflammation and possible granulomas in his stomach so idk if surgery in that area would be indicated. But he hasn't gained one pound yet so I am getting very worried. Did you see an immediate improvement with TPN or did it take awhile?
I don't remember specifically regarding how fast the weight gain was on TPN. I think it helped weight gain, but in a gradual way. I know there are some risks associated with it. Cutting out dairy specifically helped reduce stomach aches so that also helped weight gain. We put acacia powder in capsules for fiber and that has helped bulk up stool also.
TPN is useful and has its place, but has more complications than using the gut. I know in our hospital, we shy away from it unless completely necessary. I would imagine they'd push to use tube feeds before TPN for multiple reasons (lines get infected, TPN is expensive, TPN can cause lab issues long term, TPN can cause liver disease and I ssues, etc.) unless the goal was to rest the gut, or if gastric feelings fail.
The gastric inflammation should not preclude a gastrostomy tube. Even if there was too much stomach inflammation for gastric feedings (unlikely), they can pass the tube through the stomach to the jejunum. Also, even if TPN becomes necessary, enteral feedings as tolerated will reduce the volume of TPN needed.
Your son is at a critical growth period (less so if he has already reached his adult height), so it is important to get his nutrition levels back quickly.
Fingers crossed for you that things turn around soon!
Jan