Who has crohn's and ileostomy? Can you tell me about it?

My husband has crohn's and will be having an ileostomy soon (2 weeks). He has had resections before but this is his first stoma. His disease has mainly been of peri rectal crohns and with plenty in the large intestine. Just curious about your stories and what you have been through. I feel like I hear plenty of stories of UC and stoma's or colon cancer and stoma's, but not too much about crohns and stoma. So please tell me your story, your ups and downs, how your stoma has affected your life- positive and negative. (and please if you have other diagnosis's I am more than happy to hear your story too, we need all the help we can get! I dont want to make it sound like I am uninterested or don't care about your UC, or colon cancer or other diagnosis's- sorry if it sounds like that, not meant to!)
Thanks, have a great day!

Thank you! That's so great to hear! I'm so happy for you! I do have a few questions. What kind of procedures have you had done for blockages at the stoma? What caused it? What fixed it? How did you know? If you dont want to answer you don't have to- but has sex changed for you at all? Thanks again! It's so good to hear positive stories!

Stefanie and 80's... when your operations were proposed to you did you go through a period of, geesh almost like mourning? I was told it has come to the point that this is going to be my life from now on and to be honest I am hurting inside emotionally like I have never about myself before. I have suffered 30 years now with crohn's disease and multiple operations, meds etc. I am so weary of it all. I am afraid this will just be another way of suffering differently.
Not coping too well but I am trying, I promise I am.

I have had most of my ascending colon and parts of my small where they meet removed. The last small bowel follow through show things coming to a stop and then barely moving at the site of osmosis. But I also have strictures further up. The plan is, do it continue humira and hope for the best. My health is so crappy and I am out of shape, the thought of being laid open yet again scares me. The last major operation was in 2005 and that was almost like a lifetime ago in terms of my strength and resolve.

I believe I had a blockage only once, 5 weeks postoperative. It hasn't been confirmed as the couldn't see it on the X-ray, or by the time they took it it has resolved. My surgeon said that's not uncommon in the weeks following surgery, I guess my bowels just rearranged themselves.
I think what you can do before the op is get to meet your stoma nurse and ask her all the questions you have on your mind. Also keep in touch with her post op, she'll help you find the right appliance and combinations to stop the leaks ( they will happen in the beginning). And stop skin irritations in their tracks.
And I second 80's, for me everyday now is a mini miracle, I am in awe of what I can do now to what I gave up in the last 10 yrs. you only fully aware of it once you are better as I was so focused on my Crohn's before. I didn't really mourn my colon, he was giving me so much pain and grief, whenever I went to the loo before my op, it ended up looking like a small animal got slaughtered and that scared the h***out of me. And not to have that was a godsend for my mind.

I decided on surgery after I started having all kinds of extra intestinal complications -- I had a skin condition with painful boils all over my butt, had erythema nodusum (big red bumps) all over my legs, an eye thing that made it so painful to be in light that I wore sunglasses and a baseball hat inside (and my eyes still hurt), and worst of all, I got a 104.6 fever while I was on pred and cimzia, and it wouldn't come down. Also with the double digit number of bathroom trips per day for a few years.... and constant fatigue.

By the time I got to surgery, I thought "I'm done." I'm done trying diets, done putting these poison drugs in my body, just done. I was really ready, so much so that I almost didn't trust it I was so clear (a lot of folks here said they'd felt that way too, and that helped).

My doc wasn't positive that surgery would take care of all the extraintestinal symptoms, as my immune system had just gone haywire. But I haven't had any of those symptoms since, and it's been a year and a half. I agree with others, surgery felt like a miracle, like I got my life back; I'm healthier now than I ever expected to be again.

I have had a lot of complications, but they are nothing compared to being sick all the time. I had lost perspective, had no idea just how sick I was.

When I asked my gi if he thought surgery was a good idea, he said he thought it was a good idea two years ago....

I am one of those folks in the indeterminate diagnosis camp....I probably have Crohn's, but it is possible that I have UC. I never had inflammation anywhere but my colon and rectum. Gi said it was 85% that surgery was a cure.... so far so good.

Bluegrass, what kind of complications did you encounter?

Thank you for responding with positives about it all. I am fairly certain I am still going to be taking Humira once the surgery is over. I have other auto immune conditions that need to be held in check. When I developed psoriasis it spread so fast that within 3 to 4 months I had 75% coverage of my body. about 18 months ago for financial reasons I came off it and immediately the crohns and psoriasis came raging back. Unfortunately by the time I began the humira again the damage to my belly had been done. It's like once a stricture has happened, even though the medication is given to control inflammation my intestine is already damaged to the point that things do not move through it properly anymore.

Oh yes, that will make a difference. I had laparoscopic also. The pain of surgery is nothing compared to crohns pain and the best thing is they give you pain meds!

Thank you for sharing. Glad you are doing well.

I am just copy/pasting from my Facebook, I hope that is ok!
I have had a handful of people ask me about my most recent experience in my battle with Crohn’s disease. I have shared an “overview” of my situation with the Facebook world and friends but only the really nitty gritty stuff with family and a VERY FEW close friends who might as well be family. As I get further out from my surgery I feel like sharing the experience – the ups, downs, triumphs and failures – will help me as I continue to heal physically and mentally, but maybe it will help someone else who has experienced something similar or someone who may be considering a similar surgery. Grab a cup of tea, a beer, a snack – whatever you need because I tend to get wordy and winded and you could be here for awhile. Also, please note that some people may find the content upsetting as there are vivid descriptions of actual surgeries, parental discretion is advised J.



In August of 2011 I spent my first overnights at BAMC in San Antonio and it was pretty much downhill from there. I was in and out of the hospital about every 6 weeks staying anywhere from 3 to 6 days for complications of my Crohn’s disease. At this point I had been on nearly every medication that is approved in the treatment of Crohn’s disease and a couple that weren’t – shhhh!



My stay in October brought me in contact with the surgical team and I was referred to a colorectal surgeon. I had an initial consultation with her and we decided that surgery was definitely an option for me and it was a matter of figuring out when she could fit me in her schedule. I landed back in the hospital in early December at which time my gastroenterologist scheduled me for a colonoscopy and the surgeon attended to see what she had to work with – which wasn’t much people. I entered the hospital on December 6 and I believe I was discharged on the 11th? When I was discharged I had a surgery date of December 15.



The surgery I had is called a total proctocolectomy with end ileostomy. In regular people words that means that everything from my rectum up to my small intestine was removed/sewn up and then the end of my small intestine was brought through my abdominal wall to create a stoma – affectionately named Stella.



So, I went in for surgery at O dark thirty on December 15 and when I came out I thought all was right with the world. I was hooked up to a PCA – patient controlled access? Pain pump of morphine, I push the button it gives me medicine. Additionally I had a pain ball – I had NEVER heard of or seen one. Basically these 2 teeny tiny catheters were laid just under my skin on my ribs and they released a continuous flow of some pain medication, I don’t even remember what it was. The night of my surgery I asked to get up and walk – I made it to the door of my room and turned around to head back to the bed. The nurses were amazed that I made it to standing; I was set on healing and getting back to my life!



The next day I took a shower – as much as someone who is attached to an IV, a pain pump and a pain ball can take a shower LOL! I was allowed to eat and I had coffee, we thought everything was going very well. After a couple days I became very nauseous and started having severe heartburn like symptoms. My team feared that I was having a back up in my small intestine and inserted an NG tube to drain fluid from my stomach. At this stage either my mom or Raymond was spending the night in the hospital with me – on this specific night Raymond was with me and he noticed the color of the fluid coming out of the tube was changing, and not a GOOD changing. He immediately notified my team that there seemed to be blood coming from the tube – I must have had 8 people in my tiny room fumbling tubes, canisters, medicine, etc. I was moved to a more intensive care floor where I had a dedicated nursing team just to myself.



On December 20 I had emergency surgery; the piece of the small intestine that was used to create the stoma twisted causing an obstruction. My surgeon did a small resection and created a new stoma. I came out of surgery with an NG (naso-gastro) tube – it served to release pressure of any air that was in my stomach as well as pump out any fluid that was hanging around.



On December 21 I spiked a high temperature with an elevated heart rate and bleeding and I moved to CCU (critical care unit). Additionally I had excessive swelling in my right arm and hand. I went down for an ultrasound and x-ray. There was no clot in lungs or arm. My surgeon believed my medi- port could be infected causing the high fever. They drew blood from my port and my peripheral IV to grow cultures and determine source of infection. I also had a blood transfusion.



On December 22 they removed the NG tube after much *****ing and complaining from me (well, as much as you can ***** and complain with a tube up your nose and down your throat!). I had an upper gi to see if there was an ulcer and identify source of infection. While they had me all dosed up for that procedure my surgeon worked it out to have me wheeled over to the minor procedures area and she took out my port. Until that point the blood cultures hadn’t produced anything and she didn’t want to wait any longer. My heart rate stayed good as long as fever stayed down with Tylenol. The swelling was decreasing. During a CT scan (one of at least 12 I had I swear!) they found a blood clot in the portal vein of my liver. Because I love needles so much they started me on lovenox shots every 12 hours.



I was moved back to a regular room and for the next few days I slowly improved. I realized I wasn’t going to be home for Christmas. I was going to miss seeing that look in my sons’ eyes that you only see on Christmas morning. I wasn’t going to make Paula Deen’s French toast casserole, I wasn’t going to make Christmas dinner. The only thing I did do that remotely resembled what would have happened at home was to stay in my jammies all day. The family (including my mom) came up to the hospital with gifts and we all opened things and I got to see a version of that look that kids get on Christmas. Ugh that’s depressing – move on to me being discharged on December 27!



January 1 – I had enjoyed (or slept through) New Year’s Eve but woke up not feeling so hot. I was having feelings of gastric reflux which was very similar to the way I felt right before I went to the OR the second time for a twisted bowel. Decided to head to the ER just to be safe and of course, they admitted me. It was mostly just monitoring, etc. Released again on January 11. Are you feeling like I should have a dedicated room at this point – because I was!



On January 18 I went in for my weekly Wednesday follow up. I hadn’t been feeling well the day before and contemplated going to the ER, but I figured I had an appointment the next day – why clog up the ER? They took my vital signs when I arrived for my appointment and my heart rate was 163 beats per minute. Normal is 60-100 but the average is 76-80; so I was double the “average” beats per minute. To say my doctor was alarmed would be an understatement. I was severely dehydrated and she admitted me directly to the hospital from the clinic. My blood counts got all wonky because of the dehydration and I started having some pain in my lower abdomen so they sent me for (another) CT scan. The CT showed a small abscess and a small bowel obstruction. They took me to the OR and removed mesh that was supporting my ostomy (it is common to have the mesh as support to prevent hernias in the future) and some scar tissue that had formed. After the surgery, whole pills that had been ingested for at least one week started popping out of my stoma. The intestine was not absorbing the pills and the blockage was not allowing them to pass through. I was set up with intravenous nutrition to make sure I was taking in enough calories and had to keep track of everything I ate/drank so that the calories and protein could be counted.



A couple days later the stitches that were holding my insides together came loose and I basically “fell open”. I’ll spare the details but when I say “fell open” I mean it. I went back to the OR so the surgeon could place new stitches made of a different material (and so far so good, they are still there!). I was put on a 14day course of IV antibiotics, and in true Melissa fashion it was an ultra exclusive antibiotic that required special permission from some important person in the hospital before they could give it to me. Once I was all finished with those antibiotics and the doc was confident that I would continue eating/drinking and we got home health care all set up they let me go on February 7.



I eased back in to life at home – the first week I was here Raymond and the boys basically acted like I wasn’t here. I don’t mean they ignored me, not at all. But they weren’t expecting me to jump right back into mom mode and make dinner, help with homework or go to basketball practice. I did drive myself to my follow up appointment that Wednesday and boy was I exhausted when I got home!



The second week home things began to pick up; I started getting up to put the boys on the bus, cooking dinner and again driving myself to my doctor’s appointment. I even went by my work to check in. But, all good things must come to an end and at my appointment it was discovered that the abscess they had found on that CT scan during my last stay had decided to drain after all. Sooo, the doc had to lance it again b/c it had begun to close up and she packed it. NOT FUN. I had to go back that Friday to have her remove the packing, clean the wound and re-pack it. We’ll be playing that game for awhile and I am ready for it to be over – it hurts! Good thing they sent me home with all that Lortab.



Every day is a little better and every week I am able to do more and more. I get around fine at the house, the stairs continue to be a challenge but they are much more manageable. It is still difficult to bend over b/c of the wound and now the abscess so the boys have been keeping up with the dishes and helping get things out of the dryer.



I have been cleared to return to work with restrictions on March 19 and I feel like a little kid waiting for Santa to come. I am ready to get back to “normal” or what my new normal will be.

I was diagnosed with Crohns at age 11. Prednisone got me in remission soon, as well as asacol. After a number of years they stopped working and I ended up having a resection in about 99-2000. I was good for a while and was on Remicade. It stopped working after a year, did humira and it stabalized a little bit but eventually I had a lot of inflamation. I dealt with it for a while, lost some weight and tried every medicine for Crohns imaginable. After the trial drug MLN2000 didn't work there was really no other options and I decided to have a total proctocolectomy. Since there was a lot of inflamation in my rectum area I was not a good candidate for a J-pouch. The Crohns would more than likely come back in that area. Biopsies showed no active disease in my small intestine.
I ended up having the surgery and had complications from it including a perianal wound which is almost, but not healed all the way (from 2 years ago). This is not very common. They say about 6 weeks and it should heal.
My crohns also did come back just behind the stoma, but it was caught early so I am on Remicade right now and it is working fine.
The good thing about my ostomy is no more RUNNING to the bathroom or being in so much pain trying to hold it.

Katie's mommy so happy to hear she's doing so well now!