Crohn's Diagnosis After Colectomy: Seeking Advice and Support

RIP me - I had my colon removed on the 18th of June after the most severe flare ever that caused toxic megacolon/bowel death.
I have an end ileostomy now that I've made my peace with.

BUT
I was told the subtotal colectomy would cure me. NO MORE STEROIDS, which have been the bane of my life for four years. They believed I had UC or Crohn's colitis, and the colectomy meant I wouldn't need azathioprine or Vedo or prednisone or mesalamine anymore. Woohoo!

So, I've been feeling sick. And fatigued. And I have chronic diarrhea/super high ostomy output. They sent me for an MRE.

I have Crohn's. It's in my small intestines too.
Has this happened to anyone else?
Also, now what?
How do you manage your ostomy output?

I failed biologic therapies. Vedolizumab, infliximab, and Rinvoq all failed.

Man, what a bummer (pun intended).

Hello Kay

Yes, this can happen; others with knowledge of this will be along soon.

I'm sorry this is happening to you. I'm hoping some of our Crohn's people will be along soon with help.

Kaytea92,

Crohn's unfortunately can be in the small intestine too. Last year I had a small bowel resection caused by fistulizing Crohn's. But it was the first time in 30 years that I required any medication or surgery, so I consider myself lucky. My current GI doctor has me on Remicade infusions every 2 months. Your doctor may want you to do the same. Better than being on steroids. My output from mouth to stoma takes about 3-4 hours now. Your body will adjust to no longer having a large intestine, as part of its job was to absorb water.

There are foods you can eat to thicken it up and slow it down. Starchy foods like white bread, pasta, white rice, mashed potatoes, crackers, and pretzels can help absorb excess fluid and add bulk to the output. Marshmallows help also. Just remember to chew your food up very, very well, and staying hydrated is also very important. Gatorade, Powerade, and Pedialyte or the equivalent will help keep you hydrated. Hope this helps.

Bain

Hello and welcome to the site. I don't know much about Crohn's or UCC, but there are lots of others here who I'm sure will jump in. Sorry to hear of what you are going through. It sounds like you were not properly prepared for the outcome of your surgery, and that sucks. But, you've come to the right place. This is a great resource and a good place for venting frustration as well, so don't hesitate. I hope you get some good advice and coping tools.

Terry

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Sorry to hear about your Crohn’s.  I know how you feel.  When I had my major attack in 2016 the pain was stem to stern.  I had a canker the size of a quarter on my tongue and my anus felt like it had been blow torched and I developed a recto/vaginal fistula so my poor vulva was burnt beyond recognition.  When the doctor did a scope he could not get near my small bowel because everything was such a mess.  Remicade didn’t work and Humira was the next thing and it worked.  Hopefully they’ll find something that works for you.  My sister wanted to know if the prednisone made me hungry which it didn’t as I always starving - it did help the pain and with the antibiotics I did feel better.  Haven’t had to take it since 2016.  I got my ostomy because of two failed fistula repairs and it’s been a relief.

I had a colectomy and ileostomy years ago. Did great until 2010 and was diagnosed with Crohn's. I have tried Humira, Enbrel, and an infusion that starts with R but can't remember the name right now. Now I am on Skyrizi. No steroids for me. My symptoms are mild now, so I live with it. Your output from the ileostomy will settle down as you add more foods to your diet. Go light on fiber, but it does “tighten up” the stool. Be patient and gentle with yourself.

Hi, Kaytea, I have had my 1st surgery 25 years ago it was an ileostomy and was told that a reversal would take place after 6 months. Well, after 3 weeks at home I was back in the hospital and after all the test they gave me it showed that the UC came right back and it was pretty bad cause I was averaging 1 to 2 hospitalization a month. So back on meds and they moved the reversal up after 4 months hoping that would help. I manage pretty well for about 4 years still sick but was able to go back to work until all hell broke loose and my internal J-pouch prolapsed and I couldn't eat anything at all. All the surgeons and DR.s in NJ told me go home and get your affairs in order. My husband did not except this and researched where The number 1 J-pouch specialist was and we found him at the Cleveland Clinic . So we went to him and He told me that I was dying of malnutrition and I need to go on TPN so I can gain weight to be able to have a temporary ileostomy and hopefully after 3 surgeries in 3 years I would be able to have a reversal again. It took  almost a year on TPN to where they felt I could have the first surgery back in March of 2012. T he next day the surgon came in my room and told me I couldn't have the other surgeries because I wouldn't make it through the surgery that the damage was to bad and to try to live the best life I could with the diversion pouch.

Well, my story is way too long to post it all but, I am allergic to all the new Biologic out there now so I am stuck with Prednisone and I just broke my left hip and the right one is in a lot of pain so I have ended up in a wheelchair.

I am trying to deal with my Ostomy output almost everyday. I wear an High out put bag from Convetect and a new wafer for the stoma because its now prolapsed too. 

I am trying to find the perfect supplies to help meet my needs now.

It seems like as we get older things change all the time.

When I read your story it sounded like my own. I feel for what your going through, but I will tell you that you will get through this and figure out your body. What you can eat and what you can't. I hope and pray for you that you have a good support system around you and if your alone than talk to us. We need each other to get through this life, so please ask me anything you want and I will tried to give you my experience and advice the best way I know.

Hang in there, and I pray for God's blessings on you !!!!

Littletoot`

Hi there, little toot.

Lady, you are a true warrior and have my deepest respect and prayers.

Similar. Diagnosed with colitis, 25 years well controlled with sulfasalazine, prednisone terrible for me. Not as effective as 5ASA. Then after preventative surgery and JPouch for a few years, I was diagnosed with probable Crohn's. Was being overmedicated (Methotrexate, Flagyl, etc.) so contracted shingles when on Remicade that was working but had to go off to build back my immune system. Then on Humira and it worked but still being overmedicated and had to go off to again rebuild my immune system. So bad with I believe CMV virus I am now on my third biologic, Stelara, and again working well.

One problem is apparently returning to a particular biologic it is not as effective once it is interrupted. All three were good for me until my immune system was compromised by Methotrexate, etc. Took four weeks of isolation in the hospital and a high intravenous dose of prednisone to recover and go on Stelara.

My rheumatologist has me back on sulfasalazine for RA I believe. I have three kinds. Stelara should help with the intestinal arthritis. All good and no pain. The key is getting diagnosed early.

Government here pays for my biologics.

Little Toot,

I iterate Bilbo Baggins ..... 'You are an amazing lady' - and so I guess is your husband and support team - bless you all.

I will also iterate for all those reading this thread that, in my own humble experience, it is a case of learning what works best for us - and yes, our body process does change over time and circumstance, but knowing thyself and being patient and managing not only diet but trying for a good timing for regular eating and sleeping is important and can be 'underestimated' ....... for we do have the power to help ourselves, even when our circumstances become particularly challenging.

Sending best thoughts .....

BW

from Wales UK

Jayne

Your story has moved me to tears! You are so strong!