I Want My Son Back

mom of colitis patientMeet Jamie:

Hi I’m the mother of a 24 year old son with UC.  He was diagnosed at age 17 but has had stomach issues from birth. Milk allergies, constipation , diarrhea, stomach aches and colic for about 4 months. My son is a wonderful young man, father of a 4 year old. I HATE U.C.!! I see my son in pain all the time but he keeps pushing through. Right now we are sharing a hospital room he is in severe pain trying to be tough but now I know when he has pain the more he hurts the quieter he gets and the faster he shakes his leg. My heart is in my throat I can’t cry it upsets him. I am so angry why him?

My Son’s Colitis Story:

November 12,2012 my son had emergency surgery for severe ulcerative colitis that would not even respond to 60mg prednisone oral or IV. Sleeping 20 hrs a day, losing weight , and not eating. His doctor admitted him in the hospital and he had a 5 hour surgery to remove his colon and rectum. The doctor made a W pouch and a loop ileostomy. Doctor said he had a perforated bowel and it wouldn’t of lasted another week.

He came back from surgery in extreme pain, no mother wants to see her child like this.  Severe pain but was released to go home after 3 days only to return 12 hrs later vomiting and pain off the charts. After a day of tests we hear there is a small bowel obstruction. They took the drain out of his nose that was draining his stomach and he gets clear fluids.  Still a lot of pain, depression, exhaustion and nausea.  My heart is broken for him I can’t leave him here.  I’m scared.

I feel guilty, why him? My grandson is crying for his daddy but we don’t want him to see his daddy this way. Please God heal my son. I hope there are folks who read this will tell me that everything is going to be ok and this is normal. I want my son back, my grandson wants his daddy back, his 6 siblings want there brother back!

hospital bed

the hospital bed

  • Have you or a loved one went through this surgery?
  • Is having complications like this normal?
  • How will surgery 2 be and when will it be?
  • How long before he feels great ?
  • Why can’t I find any information about the W pouch ?
  • How do parents cope, is there chat rooms where you can vent.?
  • How will he be in 5,10,or 20 years? The doctor says he will be cured will he?

written by Jamie

submitted in the family/friends of UC’ers section of the site




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w pouch

12 Responses to I Want My Son Back

  1. Adam
    Adam November 23, 2012 at 7:53 pm #

    Hi Mother Jamie,

    I am so sorry to hear that your son is having a tuff time with recovering from the surgery. I can only imagine how difficult it must be to watch him going through this.

    But there is some good news, there are many stories you can read which go into detailed accounts of what the whole surgery & post surgery process can be like from fellow UC’ers who have been through that exact same situation. It seems from some research I’ve done that the W Pouch is very similar or maybe identical (just a different name) as the J Pouch surgery. (J-pouchers, please correct me if I am wrong here)

    And, Baker, actually submitted a story that I posted just a few hours ago with an incredibly detailed account of the surgery and recovery process he has just gone through (and still is in the middle of). You should for sure read his story if you have not already, it’s posted right here:

    https://www.ihaveuc.com/j-pouch-surgery-1-the-good-the-bad-and-the-ugly/

    Also, there is an entire section of the website dedicated to stories from other people who have gone through surgery. You can find those here:

    https://www.ihaveuc.com/category/colon-surgery/

    I hope those links help you out with some answers to your questions, and I wish your son and the rest of your family some easier times moving forward once his full recovery is complete.

    -Adam

  2. joanna November 23, 2012 at 8:08 pm #

    oh jamie. i am so sorry your son is so sick right now. i feel like my mom could’ve written a similar post last year when i had a long hospital stay. he is very blessed to have a mother like you and i know he is going to come out of this a stronger person. this disease really takes a toll on your mind and personality and i remember being very distant, depressed, and angry in the hospital. my eyes just looked totally vacant.

    i will keep him in my prayers.

    • Mother Jamie
      Mother Jamie November 24, 2012 at 12:13 pm #

      Thank you for your support during this extremly rough time we are going through. We are home now but he is still having a really hard time it seems we can’t get things regular the bag is filling up really fast or not at all. He has had bad muscle cramping in his hands and legs a lot of gas pain, hiccups and is just exhausted. I had to go buy a recliner for him to sit in he can’t get comfortable in bed. I have to wake his to drink so he won’t become dehydrated an he gets so mad, he has been able to eat a little bit ad a time but feels bloated. Wow this disease is just all around horrible I can’t wait for some positive to come out of this all. Thank you for your support and letting me vent my frustrations here. I hope every thing is going well for you folks who have been through all of this.

      • myrtle miller November 25, 2012 at 3:51 pm #

        Jamie
        It probably wouldn’t hurt to ask his doctor if treating his depression would help until he gets use to all of the changes in his life. And finding out what foods help with depression that he can have on his diet and making sure he gets them would also be a good idea. Hopefully your taking really good care of yourself too.

      • Beth Yeatts November 25, 2012 at 6:14 pm #

        I read your story from post by mr. Rodney Pike. I have suffered From gastrointestinal disease since May 2007 from that time until 2009 in a 24 month period i was hospitalized inpatient 27 times. I would go on Vacation and end up in the hospital halfway thru it. Needless to say the inconvenience of being away from home and not knowing was debilitating to say the least. When I was home and in the hospital I never wanted my children to visit me and see me so ill that I would beg God to take me. My brother comforted me, telling me everything would be ok the doctors will figure out whats wrong and fix it. He needed me. He committed Suicide last March. The times I have been hospitalized since then have ben the lonliest of my life.
        When on Vacation in Islemorada, I was admitted to Mariners Hospital in Tavenier. They diagnosed SMA Syndrome, they said the catscan was textbook, my doctors here never looked at it they went by xrays said they didnt see it and simply gave me a diagnosis of Gastro Paresiis. Simpler than SMA.
        I’m not convinced that is what it is either. I have been to UNC Chapel hill to see the Guru of Gastro Dr. Dross. Still no firm diagnosis. I still suffer bouts and have only been hospitalized twice this year. This brings me to be curious about UC because of the flucuation in weight the inability to make plans in advance to do anything, I am very careful with my diet. I have endoscopies every year often twice, my stomach lining is raw, colonoscopy every year, they are always removing something. If nothing else it has inspired me to do more reading and research on the disease your son suffers. I will pray for you and your family
        With Love and Peace
        Beth

  3. Angie
    Angie November 23, 2012 at 8:24 pm #

    What a WONDERFUL, COMPASSIONATE, LOVING mother you are!! I wish my mother was as caring as you! Don’t get me wrong…I know she loves me but sometimes I wish she was there more for me. This is a nasty disease we are fighting, there’s no doubt. We feel so lonely, isolated, and vulnerable. Being in your son’s shoes, I can honestly say as hopeless and desperate as you may feel toward helping him, we feel the same. Most of the time we don’t know who we are anymore. Physically and/or mentally. Unfortunately, stress, as I’ve noticed, takes the most significant toll on our health when we’re down and out. Keep on loving and caring for your son…even through the tough times…be strong for him. Never stop letting him know that you support him and will always be there to help him. It will mean more to him than he could ever express to you. God bless you both as you endure this struggle…and I hope your son’s surgery will help him on his way to a healthy life.

  4. Matthew D November 24, 2012 at 10:17 pm #

    Hi Mother Jamie! Ditto what Angie says about what a great mother you are! I had surgery at 19 back in 1987 after fighting UC for a year. After sugery, all the UC pain is gone, but you do have to heal from the surgery- two step procedure for me and the second was part was done 4 months later. Would have been soon I had been healthier- I was very thin after the first surgery. After the second surgery, he won’t have much pain and will gain more and more control the output. Hopefully all will go well, but these internal pouches can experience problems. Whether one has a w-pouch, j-pouch or s-pouch, problems can happen- but usually when they do it’s a hassle but not nearly as painful or threatening as UC. Safe to say he’s already been through the worst. Doctors will say that surgery for UC is a cure, but the sad truth is that after surgery you are more likely to get Crohn’s disease later on in life than someone who never had IBD to begin with. That happened to me, but I got 25 years of remission in between. I hope the w-pouch works out well. If it fails down the road there is always the option of a permanent ileostomy and that will enable him to have a normal life. My pouch failed 22 years ago and my ileostomy was created at 22- I’ve had a full and happy life ever since. One way or the other, he will be moving forward and happy. Hopefully sooner rather than later! God Bless. Matthew

  5. Mother Jamie
    Jamie November 25, 2012 at 12:37 am #

    Thank you Matthew, That is scary thought I have never heard of a case of UC turning into Chrons. I am already having a horrible time seeing him go through this W pouch surgery. He had his surgery on the 12th and we have left only to return 2 times since surgery for complications. First 12 hrs out and a small bowel obstruction now we were home for about 36 hrs and are back with a blockage and dehydration. Why did your J pouch fail? I am hoping that things have improved over the last few years. I wish I could find some one his age that has went through this. I can’t get him to use the support groups I wish there was a counselor he could talk to I need to ask his Dr about it. How long before your body quits having all the complications and gets well?

    • Matthew D November 25, 2012 at 11:15 am #

      UC doesn’t “turn into” Crohn’s exaqctly. It’s just that the cause of IBD is not known. There is a form of IBD called Crohns Colitis which can happen in the colon. It seems in my case I had that form, even though all along everyone thought it was UC. Even after surgery, the pathology report confirmed UC. But 25 years later I had a small bowel obstruction which I thought was simply due to something I ate which I shouldn’t have. But the blood work showed something else going on and ultimately I was scoped, which confirmed Chrohns in my terminal ileum, just inside the stoma. It happens, but the having the ileostomy actually makes the Crohn’s more manageable since I am not incontinent. My j-pouch failed most likely because of my disease. I had chronic pouchitis, and developed abscesses. I’m sure there were other problems as well, but I don’t recall now. I ultimately had 14 surgeries in about 3.5 years, ultimately going with the ileostomy. If the pouch fails, it can be very hard to tell if the problems were actually caused by the disease, but that’s always a possibility with IBD. My body stopped having problems after I had the ileostomy, but then about 23 years later after that surgery I was diagnosed with Crohns. Some people I know had lots of problems initially but then everything settled down. Seems different for everyone. Having the ileostomy surgery in my early 20s was not something I wanted, but I really wanted my life back. I have had a full and normal life with no regrets. There are LOTS of groups online one can go to learn and get questions answered. I like crohnsforum.org. Sara Ringer has a good blog on facebook- she is in her 20s I believe and had lots of trouble (her illness is quite stubborn) but still has the j-pouch. I’m sure your son will discover these kind of support groups in time. I hope things pick up for you all very soon!

  6. JamieIsLame
    JamieIsLame November 26, 2012 at 10:56 pm #

    Hi Jamie (nice name!)
    I, just like your son was diagnosed at 17.
    I haven’t had this surgery, but I know a few people who have.

    The usual reversal time is 3-9 months, until then they live with an ileostomy.

    The W pouch from my understanding is just another technique of the already popular J-Pouch surgery, if you want info on that, there’s many good medical articles just a google click away.

    the next month will be horrible getting used to the pouch, he’ll be good after that.
    then after the surgery he’s gonna be bad again for a while, but not long! people have said it’s around 2 week before their bowel gets back to normal.

    afterwards he should be cured! there’s nothing to say he wont be, but there’s a small chance of re-infection in the rectum or that the disease may actually be crohn’s, but that’s not something to worry about yet! just worry about getting him better :)

    Hope everything goes well!!
    – Jamie

  7. Andy November 28, 2012 at 10:35 am #

    I’ll be praying for you, your son and you all’s family Jamie. God heal this man and allow him to be the father, and man you want him to be. In Jesus’ mighty name, Amen. God bless y’all Jamie. I’ll continue to pray.

  8. Mother Jamie
    Jamie December 2, 2012 at 8:34 am #

    Thank you all. Well it has been and still is a long rough thing to go through. My son had his surgery on 11/8/12 and as of today he is still in the hospital with complications, partial obstructions, dehydration, lot of severe pain and he went from 195lbs in October to 148lbs today. He was not fat by no means he has lost all of his muscle tone and gets extremely tired walking for 10 min. The doctors are plainning to do the take down as soon as they can in the next couple weeks. Now he is on TPN with a pick line and on a full liquid diet. This. Has been so hard on him and our family his son has night mares and wants his daddy home. He has 6 siblings that are a mess. My daughter is getting sick with worry. His youngest brother has autisum and is picking his skin apart. I have missed 3 weeks of work to be with him and every muscle and joint in my body is hurting but not as bad as the heart break I feel. I don’t know how much longer I can watch my once happy family just fall to pieces. Please someone tell me it will get better and you have seen this kind of complications before. I still don’t know why this happened to him he has always been a good boy the best friend,daddy,brother and son. He dont drink do drugs smoke he works hard helps every one moving fixing cars repairing peoples homes and never asks for help in return. Just don’t seem fair to me.

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