Can crohns and ulcerative colitis be pain free?

DebE13 · Post by **DebE13** » Tue Aug 25, 2015 8:44 am

I had posted earlier that my son has had D since the end of July. Nothing has improved and he said he is "going" about 8-10 times a day. Too familiar...... His stool study came back negative for everything tested so something else is going on. His GI was on vacation last week so the colonoscopy was scheduled for September 11th which seems an awful long time to wait. I got a call yesterday saying the doctor is back and moved the colonoscopy to tomorrow. He is having his liver biopsy this morning and we had an office visit with the GI earlier this morning. It sure has been a whirlwind the past few weeks. I'm happy he is getting it all done before he moves away to college this weekend. Not eating for two days is going to be hard.

So my question is...... They suspect crohns or ulcerative colitis. The UC ties in with his PSC but he has no pains, cramping, discomfort, etc. Everything he descibes sound more like MC. I guess we will find out early next week but can crohns and UC present themselves without the typical pains? Is it common for MC to present itself to multiple members in a family?

As a side note, the nurse commented that MC is more of a nuisance than anything. I know she was making a comparison to the other types of colitis which have more uncomfortable symtoms but I wish the medical community wouldn't refer to it so lightly. Of course, I kept my comments to myself while thinking how debilitating and socially isolating MC has been and has utterly changed my life. It may not be that way for many MCers who have adapted and adjusted their attitudes but I still frequently fall in that hole of just barely managing the whole thing. I'm sure on a different day I would try to have a more upbeat attitude but I'm feeling like I'm running a marathon with ball and chain tethered to both ankles. At the same time, I also know a poor attitude will only make a bad situation worse.

Post by **tex** » Tue Aug 25, 2015 9:27 am

Deb,

I'm pretty sure that early on, painless Crohn's or UC is possible, because the inner layer of the intestines (the mucosa) does not have any nerve endings. The submucosal layers do contain nerves, so if any lesions develop, there should be no significant pain until the lesions reach the depth of the submucosal layers.

I believe we have several members here who have mentioned that their mother had MC. Even though she was never diagnosed, when I look back at my own mother's health issues now, it's obvious that she had either celiac disease or MC or both, because she had the same symptoms that I later developed, right down to the symptoms of magnesium deficiency. But back then, no one knew any better.

Tex

DebE13 · Post by **DebE13** » Tue Aug 25, 2015 9:35 am

Makes sense. I believe my mother is the same. She won't go to the doctor and won't change her diet. She suffers from the same D issues as the rest of us. I know she struggles with sending treats home. I don't eat them anymore but have brought them home for the rest of the family but now don't want my son to eat them either. We all know anything cooked by grandma is the best possible treat ever. My mom and dad are the best. They know I can't have the typical treats so they now send home steaks or meat "treats" along with fresh veggies from the garden or farmers market.

Joefnh · Post by **Joefnh** » Tue Aug 25, 2015 6:45 pm

Deb in the early part of Crohns many do not know they have it until eithier digestive problems arose or pain starts up. I had Crohns for about 3 years before I felt any real pain, the probability is that I had Crohns for longer than the diagnosis as the symptoms were pretty mild. In the early stages it's easy to mistake Crohns for minor digestive issues.

There is a blood test that is now widely excepted to be better than 90% accurate at sensing the presence of either Crohn's or ulcerative colitis. You may want to ask your doctor if they have run the a test by Prometheus labs called the "Prometheus IBD sgi Diagnostic"

Here is a link to some info about this simple blood test

http://www.prometheuslabs.com/Resources ... 5-0113.pdf

I hope your son can use diet and any medications that may be necessary to avoid any long term issues. There has been several recent findings that Crohns can be controlled or at least mitigated by dietary changes.

http://pulse.seattlechildrens.org/alter ... me-crohns/

Best of wishes to you and your son Deb

DebE13 · Post by **DebE13** » Wed Aug 26, 2015 11:58 am

Thanks for the info Joe. Very interesting. I will ask about the blood test today. We are in the waiting room right now. Poor kid hasn't eaten since 8pm on Monday due to yesterday's liver biopsy. I give him credit- I would be complaining up a storm. He just rolls with it all.

Looking at the second link,mit is also very interesting. The diet seems similar in concept to an MC diet but wouldn't all the fruits and vegetables cause irritation? I will have to look into this further. I suppose the better idea would be to wait for the dx first.

Can a person have multiple bowel diseases? Mc and UC or crohns?

Gabes-Apg · Post by **Gabes-Apg** » Wed Aug 26, 2015 12:02 pm

Yes,
Joe has both MC and Crohns.

DebE13 · Post by **DebE13** » Wed Aug 26, 2015 12:39 pm

That must be a juggling match to manage.

He is dx with ulcerative colitis. The whole tract is inflammed and looks very angry. His GI showed us pictures of the yellow pus-like splotches. He will start Lialda in the morning and wait for the pathology report to come back. I'm not sure what they will want to try for long-term management. I'd appreciate any medications I can suggest for tge try-first list. Although, I also don't know if having PSC will make a difference in what the plan will be. They said it could take a couple of weeks for the D to stop. Hopefully it will be sooner than later.

We are also waiting for the results of the liver biopsy which will confirm the autoimmune hepatitis. They said they would treat that with entocort. Can entocort be used effectively with ulcerative colitis?

Jeesh, the cocktail of meds he will be taking will be absurd. Big sigh.

Post by **tex** » Wed Aug 26, 2015 5:35 pm

Deb,

I'm sorry that this adds another level of complexity to his lifestyle. Uceris usually works better for UC, but if the inflammation has already spread into the ileum, the Entocort would probably be the best choice.

Please read Nathan's (NJ) posts in this thread. His UC diagnosis was very similar to your son's.

Son just diagnosed with ulcerative colitis

I'm sure he wouldn't mind you emailing him for consultation if you feel that might help.

Tex

Sheila · Post by **Sheila** » Wed Aug 26, 2015 5:47 pm

Deb, I'm glad your son will be getting his colonoscopy sooner rather than later. MC definitely can run in families. My mother was diagnosed with MC while in her early 80s. I found this site back when Judy Malinowski was running it and found out about Enterolab. My mother did the Enterolab tests and was told to stop gluten. She refused to do it. Although she took Entocort, it didn't work for long because she kept eating gluten. She died at 92 with chronic watery diarrhea and several bouts of dermatitis herpetiformis.
After she died, I was diagnosed with MC and, after genetic tests, with celiac. Now my youngest son, who had food allergies as an I infant as well as asthma, has all the signs of MC. He finally stopped eating gluten a few months ago but is resisting seeing my GI and getting a colonoscopy. He undoubtedly is carrying the same celiac genes.

I hope your son does well and gets a good diagnosis.

Sheila W

Joefnh · Post by **Joefnh** » Wed Aug 26, 2015 8:03 pm

Deb the entocort will provide the quickest most direct relief for the UC right now, and even some oral prednisone might be used short term.. As Gabes mentioned I do have Crohns, MC (CC) and I did until recent bowel resection surgery, had diverticulitis.

Overall when your son is this flared up its important to calm that down quickly and then work on finding out what elements in his diet can be adjusted that may help. I do know that the SCD type of diet does seem to be helpful to me. The Lialda will most likely be helpful in the long run and I would imagine that over time that once the dietary issues are fully understood that he might be able reduce the need for the meds.

One important factor is to make sure that the inflammation and the ulcerations are well controlled. When those are active it equals damage that does over time accumulate, which can lead to further problems.

Of note with my recent surgery this summer I was very fortunate to have the Professor of Colorectal Surgery at the teaching hospital I was at take my case. What was interesting in that he has had fairly active UC for about 20 years. We had a few chances to compare notes as it were and he fully agrees that diet is key and at times one of the main ways to calm down UC or Crohns.

All in all Deb while this diagnosis is no fun at all, it can be readily dealt with and in no time your son should be feeling better. I know initially it's scary and the meds can seem daunting, just keep in mind for many the medications can be reduced significantly once things settle down and the dietary issues if any are addressed.

Best of wishes to you and your family

Post by **tex** » Thu Aug 27, 2015 7:35 am

Deb,

If you don't mind reading articles written for GI specialists, here's a brand new article about the diagnosis and treatment of UC from Gastroenterology & Endoscopy News, fresh out this morning:

Ulcerative Colitis: Diagnosis and Treatment

Tex

DebE13 · Post by **DebE13** » Mon Aug 31, 2015 7:16 pm

Thank you all so much. I fowarded my son the information too. We just finished moving him to college this past weekend and he is glad to be back with his friends and have an apartment. We text daily and before I left I stocked his fridge with safe foods. He shared with me that urgency is now becoming an issue and he is concerned about walking to classes and what if he needs a bathroom when holding it isn't an option. We talked food and be said it happened after eating pizza so it was a good teaching opprtunity. Pizza= gluten in the crust, dairy in the cheese, greasy meats......one unhappy time in the bathroom.

He is starting to realize he needs to be observant and make the connections. Sucks. Hopefully the lialda will kick in. I Mentioned eating turkey and rice during a flare and keeping it simple. It broke my heart when he said he declined going out to eat with friends because if the whole food thing. Damn UC. At least his attitude remains positive and he seem less bothered by the limitation than I was.

Still waiting for the pathology to come back. Shoukd be interesting to see what they plan to do with the UC and autoimmune hepatitis. He already told me his weekly pill sorter will not nearly be big enough for everything he will be taking.

It's made me look at my own MC in a different way. Had I not struggled with MC and found this group, I would be totally clueless as to how to support him through this. After things settle down a bit I also want to have his thyroid tested. Both his dad and me have thyroid issue so I'd like to see where he's at.

Sheila · Post by **Sheila** » Mon Aug 31, 2015 7:35 pm

You're doing a great job, Deb. It's so hard to find the right balance when the consequences of a serious illness depend in great part on a young person. It is so hard to be different, especially among males. I hope he does well and his tests are favorable, and that you will heal as well.

I'm still waiting for my son to go to my GI doc, to get the colonoscopy with biopsies, get the Enterolab tests and on and on. He is gluten free for the past few months but still struggling. He had a hugely embarrassing accident a few weeks ago and I'm hopin that will give him the impetus he needs to just DO SOMETHING. It is so frustrating to know what needs to be done and be powerless to get it done. Adult children live their own lives.

Keep up the good work. Deb.

Sheila W

DebE13 · Post by **DebE13** » Tue Sep 01, 2015 11:36 am

Thanks Sheila,

It's been a learning experience. He texted me last night as I was getting into bed and attached a disturbing picture of blood clots he passed. It was the first time I didn't call the doctor even though I wanted to. I realized I can no longer answer the questions about how he feels and he has to learn how to make the after hours call. The on call doctor said it was a wait and see and that he could follow up with his GI in the morning. The nurse called me this morning because she couldn't reach my son and I learned the bloody stools are common with UC. I have a lot to learn.......

Post by **tex** » Tue Sep 01, 2015 11:55 am

Deb,

Yes, unfortunately the occasional bleeding is one of the big differences between MC and UC or Crohn's disease. That definitely confirms that he has UC. It will come and go with flares.

Tex