Where Is My Happy Husband?

husband with colitis

Introduction to Mrs. Huds:

I’m Mrs. Huds and my husband of 8 years has been diagnosed with UC for at least the last 4. Our 5 year old only knows a sick daddy.

What Led Me to Believe Something Was Wrong?

His tummy was ALWAYS hard. For most people, that’s a good thing. It was weird because he looked about six or seven months pregnant, but his tummy was hard as a rock. Well one day we were in the bathroom talking while he was “handling his business”. You have to understand, I grew up in a house with treetop boys (if you’re wondering about “treetop brothers” you must read her comment below!) and one real bathroom, so this is not unusual for me. Ok, so I happened to look (I don’t know why) and the bowl was full of bright red. I freaked. I told him that wasn’t normal. He said it was normal for him. I told him that in no alternate version of ANY reality was that normal.

He went to the doctor and they scoped him for the first time. I don’t really know why nothing happened with that. We moved away and he never said anything until we were in the bathroom again, this time I was showering and happened to look. He got scoped again and was diagnosed in 2008 with UC. They put him on Llialda and a ton of omega 3 and prednisone and to make matters worse, while he was in the hospital, he contacted C-diff. It wouldn’t go away no matter what the docs threw at it. This was all in 2008.

We, then spent the next year in and out of the hospital. He goes into the hospital at least twice a year. He has been on remicade. Has low bone density. Now he’s getting IvIg, which I don’t think is working. He has been referred to the doctors at Vanderbilt and there are so many different doctors, who I am not too sure are all talking to each other. He’s going to get scoped Friday to see if the IvIg is working. If it’s not, they are talking about removing his large intestine, but keep telling him he’s too young.

As a result of his sickness, he has lost his job. He has lost himself. He has lost his patience. He is losing hope, and now I feel helpless. I’m the only one working and taking care of him and a small child. So I’m kind of getting tired. The last time he was in the hospital, he passed out in an elevator 2 hours from home. All because he keeps saying:

“I’m fine. I’m ok. I’m doing the best I can.”

I’ve encouraged him to talk to a professional because I know he’s having a hard time coping with his life right now. He is surviving right now on watered down Powerade and yogurt. For almost two or three years, if it’s not one thing, it’s another. The last blow was his being diagnosed with some sort of Pemphigus in his mouth. This is causing his tissues to separate leaving him unable to eat. This has been going on for so long that I’m sure I’ve left something out. During the work week, the only thing that gives me hope is that he wakes up everyday to turn off his alarm. He has gotten so weak that I’m really afraid. Sorry it’s so long. I’m using Swype on my tablet, so sorry for the “Swypos”.

written by Mrs. Huds

submitted in the “Somebody I Know Has UC Venting Area”





55 Responses to Where Is My Happy Husband?

  1. Laura September 7, 2012 at 6:59 pm #

    I FEEL YOU PAIN! My love has had the worst problem all year. He was diagnosed last December and went from finding out with no symptoms to a severe case!!!! Lost 50 pounds in 3 months. The best thing you can do is get an allergy and stool test. I myself thought I was feeding him the right foods, yogurt, eggs, turkey to all find out he was allergic to all! We changed his diet cut all foods he was allergic to and significant change over the past 3 weeks. He was hospital bound the day we found out the results. The GI doctors don’t ask for these test, thank GOD our crazy Internal Medicine doctor is a naturppoathic doctor as well really suggested we get these test done. We had to pay out of pocket because insurance didn’t cover. But it was the BEST $800 we spent!!!!!! See when they are sick they have no good bacteria in their gut so when they are eating foods that they are allergic to they have nothing to fight against it so it just makes them sicker. I thought I was doing good for my BF just to find out I was killing him the whole time. (lol) It’s a joke now, but 3 weeks ago I was really beating myself up. Now…..he’s had 2 remicade treatments that didn’t work and is going for his 3rd on Monday, we are hoping that with his diet in check to his specific needs that this treatment pushes this flare into remission. Jeremy was going 50 – 60 times a day and now is going maybe 5-6? Which is awesome!!! He is now peeing standing up which he hasn’t done almost ALL year, and for a man that’s big!!!!! We also have him on 200 billion units of probiotics VEGAN, Glutemaloemine, and GI protect. He drinks alot of vegan shakes and we are gluten, turkey, soy, all diary, peanut and SOY FREE. As a partner it’s been difficult to adjust to this lifestyle but thank goodness to modern technology whole foods has made it easy to buy and we just learn different ways to cook. ;-). Hey what do you have to loose at this point? He’s also started turmeric as well and a spoon full of rawmunka honey everyday which is suppose to help ulcers. Girl, I wish you the best, it’s hard to see your love one deteriorate, and I don’t care what anyone says, this disease/drugs messes with their emotions, feelings and all around aura! I feel for anyone struggling with this disease. Best of Luck!!!!!

    • Mrs Huds September 7, 2012 at 7:09 pm #

      Wow! I almost cried that you get it. Thank you. Adam, you are awesome for getting this up so quickly. I knew there were other people out there like me. For the record, I have two brothers, not treetop brothers. If anyone finds out what those are, let me know.

  2. Adam
    Adam September 7, 2012 at 7:03 pm #

    Dear Mrs Huds,

    I’m sure it must be incredibly hard sitting on the sidelines or bathroom lines watching all of this going on for so long. It’s not going to last forever, it really isn’t.

    As you might know, I myself treat my UC with diet and the SCD diet in specific. It’s worked wonders for me along with keeping my stress levels much farther down compared to how i lived 3 plus years ago. If your husband is open to new ideas on the treatment side of things, it’s an option that might be worth looking into for you two.

    No matter what, there are options for him, and I definitely believe that between the hard work of scientists right now, there are going to be even more options for UC’ers who are looking for alternatives to whatever they have tried to control the UC in the past.

    Thank you so much for sharing your story, for being there for your husband and for caring so much for him, and for being the inspiration for the new “UC Family Members Venting Area” on the site.

    -Adam

    • Mrs Huds September 7, 2012 at 7:24 pm #

      Adam, we just got back today from Vanderbilt and they are TAKING IT OUT! Finally. I saw the scope. The doc looked like she lost her best friend. Meanwhile, hubby and I are doing the happy dance. They looked at us like we were crazy. I guarantee, we’re having a coming out party. It will be a small gathering of our closest friends, methotrexate, syringes, imuran, IvIg, half of the stockpile of tp in our house, llialda, remicade. Candles, matches, (wait we might need to keep those for a different party). Next year hopefully we can celebrate his return with a family vacation somewhere far away from a can. We can try the scd after he comes home next week. Apparently it’s pretty urgent that he has this surgery. Again, happy dance over here.

      • Steve September 7, 2012 at 8:51 pm #

        Wishing you and Mr. Huds luck with the surgery and a speedy recovery!! I’m surprised the idea is bringing a happy dance but I’ll join ya(I’m thinking treetop brothers was a typo?) If it really is something, it went right over my head…

      • Adam
        Adam September 7, 2012 at 11:55 pm #

        Congrats to you guys, the reality is that people who have surgery who I’ve met are almost always 10,000 times happier with their decisions. I’m sure you guys will be happy as ever real soon. There’s a story coming up really soon from a UC’er who’s finishing up surgery and she’s super excited with her decision just like you guys will be. Goodnight treetoppers:)

  3. Cathy September 9, 2012 at 1:39 pm #

    I understand the ‘happy dance’. My daughter was thrilled to let her colon go. Good riddance, good bye! She was so excited for both her surgeries. She has her life back now. I have a happy, healthy child back. Life is good!

    • Mrs Huds September 9, 2012 at 1:57 pm #

      Cathy, I’m glad your daughter got her life back. I’m starting to get afraid. That scar is huge. Isn’t there a less invasive way to get it out? Did your daughter experience any drawbacks? Complications? How old is your Daughter?

  4. Cathy September 9, 2012 at 2:41 pm #

    My daughter (just turned 20) wasn’t a candidate for laproscopic surgery. The scar didn’t hurt and wasn’t an issue. She loves her scar. The most pain she had from surgery was gas pain. I believe the gas pain is worse for laprosccopic surgery, so I’m happy she couldn’t go that route. She has had no complications- knock on wood and thank God. Her first surgery was in January. That was the colectomy with ileostomy. The worst pain lasted less than a week. She was in the hospital 5 days, and didn’t take any painkillers once she got home. The ostomy nurses came to the house a few times until she got the hang of the bag. I had to help her with is the first week, but by the 2nd week she had the hang of it. She felt so good and so healthy, she didn’t even mind the bag or her stoma. She gave her stoma a name, and we laughed at the funny noises he made. If she wanted to stifle the noise of the stoma, she would just cover it with her hand. Once she was completely off Prednisone, in May, she had surgery to construct, and connect the jpouch. She was in the hospital for 11 days. She had bad gas pains again. When she came home the gas pain continued, but she didn’t need pain killers. She felt wiped out, but returned to work after 3 weeks. All has been good since then. She poops 2 or 3 times a day, take zero medication, has energy, and no pain. She is back in college and working part time. All she went through with surgery was nothing compared to her life (or lack of) with UC

  5. Cathy September 9, 2012 at 2:48 pm #

    I wish your husband the same happiness and health my daughter has regained. There is a big bright light at the end of tunnel- just got to get through the tunnel!!!

  6. Bev September 9, 2012 at 5:32 pm #

    Such another sad story. There are so many. I know how this disease can eff up your life and the ones around you too.

    I am so happy that you are happy. Go for it! Get the damned thing out!!

    Cheers, and all the best,
    Bev:)

    • Steve September 9, 2012 at 7:58 pm #

      Bev…I have a question for you on Allison’s story then. I’m telling you because you were not under “Bev” when you wrote there so I don’t know if you will see it. Hope you are well today! Steve

  7. Blake September 9, 2012 at 11:09 pm #

    Hey Mrs. Huds. First of all, I want to thank you for sticking by your husband through all this crap! I’m sure he appreciates it, I know I appreciate my wife for doing the same thing. Sounds like if you hadn’t stepped in, he’d still be in misery. I had my colong removed in December of 2011. Here is a story I wrote after if you want to read Update: One Month After Colon Removal. I don’t know if you guys have decided what type of surgery your getting, J Pouch, or permanent ileostomy. I had a J Pouch done in 3 steps. I actually just finished the 3rd step about 3 weeks ago. I wore my ostomy bag for about 9 months and I actually enjoyed it. It’s so much better than UC and I think your husband will like it once he gets over the initial shock of having to wear one. Let me know if you have any questions and good luck to you and the family!

    • Mrs Huds September 10, 2012 at 3:24 am #

      Blake I read your story a while ago and I went back and reread it. You are still a great inspiration. I’m glad there is still a light at the end of the tunnel. After he lost his job, he got depressed and not so pleasant. I think the worst thing the doctors have done was give us the weekend to have second thoughts and look at pictures. Yours were great, but they scared me. My Husband went from at least 165 down to 130+ in short order, he doesn’t have any more left to lose. I’m thinking of everything that will fatten him up. Now I’m getting a little scared, but we go to the doctor today to scheule his surgery. I’ll reply with what they have to say. I’ll be glad when we can enjoy our lives as a family. I’m planning a vacation or two. I’m so proud that his will is stronger than this disease and any of these stupid co-illnesses. I was so elated to hear that you and your wife were able to make the beast with two backs. I do have several questions. How do I ask them without putting them here. BTW, don’t thank me for sticking this out. If you ever got to meet the man I married, you’d understand. He’s one of the nicest, most cynical, loving, historically obsessed, patient, devoted men I’ve ever met. It’s easy to stay when he’s so easy to love.

  8. Blake September 10, 2012 at 8:39 pm #

    I’m an inspiration, Wow! Thanks! You made my day! In reality, I’m just a dude who went through the same stuff as your husband and got my colon removed. I’m glad people do get inspired by my story though, makes me happy. I just want people to know there isn’t that much to be scared of. You get your life back and you’re done with UC after this surgery. Of course, each person has different results, most are overwhelmingly good. I wrote Adam and asked him to either send me your email address or he will send you mine. I would do it right now but my full name is in my email and I don’t want any stalkers. Haha! Hopefully I will talk to you soon!

    • Adam
      Adam September 10, 2012 at 9:18 pm #

      Come on Blake, you are not only an inspiration, but a way cool dude. Just got done with dishes, so I’ll get the reply over to you soon senor!
      Thanks for looking out and lending a hand/knowledge to others here! Now when the hell we gonna have a pullup challenge?

      • Blake September 11, 2012 at 1:42 pm #

        Adam, great talking with you last night! You’re as cool as I thought you were, haha. Count me in for a pull up challenge. I’ll have to figure out how to send you a video first, so that may take a bit. I’m not as technically skillfull as yourself. In the meanwhile, better get some practice pull ups in bud!

      • shelly in maine September 11, 2012 at 5:23 pm #

        Not sure lifting those toilet paper rolls is gonna quite cut it!! Remember Blake was back in the gym right after surgery?! :-)

        • Adam
          Adam September 11, 2012 at 8:56 pm #

          OK OK, how about those 16 packs of toilet paper, those are pretty heavy!!

    • shelly in maine September 11, 2012 at 5:34 pm #

      I millionth that whole inspiration thing Blake. It seems you have been an amazing inspiration for those having surgery and those of us who are still hanging on to our innards, but are much less afraid because of people like you, Curtis, Trent, Vinny, etc, etc!
      Thanks for continuing to share and inspire.
      Guess we’ll be waiting for yours and Adam’s pull up video competition! Maybe he could get fancy and splice them together?! :-)
      Best, Shelly

      • Blake September 11, 2012 at 9:41 pm #

        Thanks Shelly! I’m about to write a whole wrap up on all my surgeries and life with an ostomy bag here soon, so keep an eye out. Keep an eye out for me killing it in the pull up contest as well!

        Blake

  9. Mrs Huds September 10, 2012 at 9:45 pm #

    Does this surgery take care of the aches and pains and possibly the foolishness in his mouth? We are scheduled for Wednesday, but his hemoglobin levels are in the can, so he’s being admitted a day early for a transfusion. His surgery is going to be the two step laproscopic version. Doc said he should be done in two months and back to normal by Christmas! He said hubby won’t remember what it’s like to feel normal. Who knew?! Blake, yes. You are an inspiration. Surely I’m not the first to tell you? I’ll let you all know how he’s doing after surgery.

    • Blake September 11, 2012 at 1:54 pm #

      Mrs Huds, I’m not quite sure what is going on with his mouth. I had something very similar when I was a little boy happen to me. They labeled it Stephen Johnson Syndrome. My mouth was literally falling apart and I would drool all day long. As far as I know, this had nothing to do with UC. I didn’t get diagnosed with UC till much later in life. I’m glad that you and your husband chose this route, I think you’ll be pleased. It will be tough in the beginning, it is for everyone, but it was worth it for me. As far as the Pemphigus, I hope they get that under control. I read up on it and it’s an autoimmune disease they treat with Prednisone so it’s a good thing he’ll be in the hospital to deal with all this. Adam sent you my email address, feel free to bomb me with questions about surgery and stuff. I may not know every answere and everyone’s case is a little different, but I’ll try and help where I can. Good luck to you and your husband!

  10. shelly in maine September 11, 2012 at 5:40 pm #

    Mrs. Huds,
    Good luck with everything…we’ll be waiting for your updates.
    Best and well wishes, Shelly

    • Mrs Huds September 11, 2012 at 10:36 pm #

      You guys are so great! I mean wow. This support is phenomenal. I will keep you all posted.

  11. Mrs Huds September 14, 2012 at 6:12 pm #

    Quick update from the hospital room. Surgery was Wednesday, it went beautifully. He’s in some pain, but it’s the “I’ve just been cut open and I’m healing back” kind. As it turns out, his large intestine was trying to evacuate and that was what was causing the pain. It wanted out a much as we wanted it out. He comes home Monday. Woo hoo. Will keep you posted…

    • shelly in maine September 15, 2012 at 6:50 am #

      :-) AWESOME…continued speedy recovery!
      Best, Shelly

  12. Blake September 15, 2012 at 10:17 pm #

    Good to hear! Keep us posted.

    Blake

  13. Mrs Huds September 18, 2012 at 6:56 pm #

    New update… Almost a week out and he’s still in the hospital. His ileostomy is putting out too much fluid. He’s emptying out around 400 mLs of fluid an hour. They gave him Lomotil to slow out down, but that doesn’t seem to be working. He is able to get up out of bed without assistance. He experienced a little set back when they removed his stoma rod. All in all, so far so good. We are both agreed that he’s safer there than here without someone who can help in an emergency. Is it normal to be this sleepy? He’s sleepy, I’m sleepy. The kid is sleepy.

    • Adam
      Adam September 18, 2012 at 9:05 pm #

      Dear Mrs Huds,
      Thanks for keeping us posted on how he’s doing. Overall, sounds like he’s doing well and much better off than before which is excellent.
      Keep us posted, and somehow we’ll all throw him a big internet party when he’s out and back home.
      Take care,

      -Adam

    • shelly in maine September 19, 2012 at 3:43 am #

      3 steps forward and only 1 back?! Sounds like you’re still heading in the right direction! No sleep for the weary…irony I guess-that is the epway in the hospital. Keep the positives. :-) Best, Shelly

  14. Blake September 18, 2012 at 9:05 pm #

    I had the same thing with my output after my 2nd surgery. They kept me an extra day and metamucil and lomotil did the trick. Of course it’s normal to be sleepy. You can’t sleep in hospitals because their is always someone in your room trying to take your blood, take your vitals, make you take medicine, or there is always something beeping. I could never go to sleep in there. Hospitals are meant for rest, but they never let you rest when you’re there. Go figure.

  15. Mrs Huds September 27, 2012 at 7:08 pm #

    Ok you guys,we are three weeks out from his first of two surgeries and the newest development is he’s developing blisters all over. They are under his ostomy bag and when they burst, the liquid gets under his seal and makes it leak. He had three leaks today and it’s shaking his confidence. I have tried crusting and that isn’t really working. We are giving our washer and dryer a serious workout. He is healing well and his only complaint is he’s having spasms in his back. Does anyone have any experience with this? Should we try a new bag? Put paste on the blisters (which, by the way, burns)? I don’t know what to do. Help!

  16. Blake September 27, 2012 at 9:14 pm #

    I had blisters, I would itch them, then they would leak which would unstick the adhesive. The trick I found that worked best was when I changed my bag, get the skin clean, put the skip prep on, then put the powder on, let it dry (I always stood in front of a fan), then repeat and repeat some more adding layers. I helps to get a good thick crust or barrier. Yes, that skin prep stuff burns when it goes on your red blistered skin. Hopefully you have an at home nurse that can come help with this if you’re not sure what to do. I didn’t have back spasms, but did have a lot of back pain (I had lower back pain after each surgery). Due to surgery, laying around 24/7 and walking with your upper body slanted forward after surgery, this is what I believed caused my back pain. It went away after a couple weeks for me. Take walks, stand against a wall and try and make your back as flat as you can… ask the nurse about that one too. I did remember laying flat on my back on the hard ground or carpet for temporary relief. I would suggest getting a belt. The kind I liked were called Nu Hope belts. Basically, a support belt that had a hole for the bag to go through, this will help keep the bag on. I don’t know what kind of medical coverage you have, but I ordered all my ostomy supplies through Edgepark and insurance paid 100 percent of it. If your husband has a stoma that is flush with his skin or doesn’t stick out very far, you may want to look into convex bags. I got the Sur-fit Natura Durahesive Pre-cut Wafer with Convex-IT 4-1/2″ x 4-1/2″ Opening 1″. This was a two piece bag system with the waters and bags come seperately (bags were called Convatec SUR-FIT┬« Natura┬« Two-Piece Drainable Pouch with Filter). Of course, you would have to measure his stoma and order the correct size. I liked the two piece system because you could put the wafter on first and you can actually see your stoma going through it and ensure a real good fit. Then you attach the bag after that, and you could change just the bag if you wanted to without taking off the water. You do have to make sure that bag is snapped on securely though because there were a couple times where I didn’t and ended up shitting my shirt. Haha, you don’t hear that phrase every day. Good luck, let me know if you got more questions.

  17. Mrs Huds September 27, 2012 at 10:15 pm #

    What does the skin prep look like?

  18. Blake September 28, 2012 at 9:58 am #

    It’s a liquid, usually comes in little packets like a moist towelette. I’m guessing you don’t have any. Did they give you an at home nurse? This link will take you to an exapmle of skin prep.

    http://www.caremedicalsource.com/Shop/Smith-and-Nephew-No-Sting-Skin-Prep?CAWELAID=1138361556&gclid=CKnP057f2LICFYZaMgodOSAAlw

    Are you able to order ostomy supplies?

  19. Mrs Huds October 2, 2012 at 12:40 am #

    Update:
    Last crisis averted, after four leaks in one night. THANK YOU THANK YOU BLAKE!

    OK really this time we are three weeks out from his first surgery (I guess that second week was extra long). He seems to be doing better. I’m encouraging him to lay down and rest. I ordered him some ostomy supplies (thanks again Blake). I got a belt for back support and few other things. He’s itching like crazy and I guess that’s normal. I think he may be slowly gaining weight? Right now hubby is tolerating full plates of food. I AM OVER THE MOON! Most days, his outlook is pretty good. In about two weeks he goes back to the doctor to assess his progress and schedule his take down. I’ve learned the hard way, that you have to be pretty quick about changing bags out. He let me name is bag, “the Burgen bag”, because, like its namesake, it’s full of… We are trying to take care of his ostomy needs while our little one is sleeping. So far so good.

    His home health nurse said the last time I changed him I did a good job. Woohoo! She comes tomorrow and if all his well, she can change and evaluate his area.

    I never thought I’d find myself saying this, but his stoma is actually pretty. It really does look like a rose. Is it too soon to think about how to heal his skin once his take down occurs? I don’t want him to look like he has been through the wringer.

    Here’s hoping this update finds you all well, or at least comfortable. Thanks so much for the support! I’ll check in soon.

  20. shelly in maine October 2, 2012 at 3:18 am #

    Great to hear…thanks for your updates.
    Continued healing….Shelly :-)

  21. Blake October 4, 2012 at 7:57 pm #

    Hey Mrs Huds! Sounds like things are getting a little better, glad to hear. Just takes some getting used to. I’m glad you have an at home nurse to help you, they are very good at what they do and I hope your getting acquainted with all the different ostomy products. It can be overwhelming because there are so damn many things to choose from and who knows which ones are better than the others. You just find out what works and what doesn’t. Glad I could be of some assistance.

  22. Mrs Huds October 25, 2012 at 3:15 am #

    Ok you guys! I can’t believe it’s been six weeks already. Hubby had his take down yesterday. I was shocked that it only took the doctor thirty minutes to do the surgery and he says it went perfectly. My hubby will be Home Friday or Saturday. He’s already been up walking and said it wasn’t as bad as he thought it would be. Right before he went back in the hospital, he started putting out loads of liquid. So much so, that he was dehydrated at check in. Him being stubborn kept, saying he was drinking water. I didn’t know whether to knock him out or cry. I guess he thought that if he drank water then he’d be fine. At any rate, life is about to get a whole lot more interesting. I’m sorry it’s been so long since updating. I finally got the hang of the whole ostomy bag thing and now that’s gone. Sadly, I think I’ll miss the Burgin bag. I’m not sure if I should grab him some adults diapers before he comes home? Well off I go to research. Thanks all of you for being so supportive.

    • Blake October 25, 2012 at 7:42 pm #

      Great to hear! Man, that was really fast. About the diapers, I got some, but diapers suck to wear and are embarrasing as hell. I suggest (this was my wife’s idea and I was against it at first), get him pads with wings. Like pads you can stick in your underwear that women use when they have the period. There much more comfortable and work well. I first used ones that were very skinny and they sucked. Then my wife got the ones with wings and were longer and wider. I’ll stick one in my undies before bed just in case I leak some. Never thought I’d have a use for women’s pads, but they’re great, and cheaper than adult diapers and you can’t tell your wearing anything. Just a warning, the first few weeks are probably going to really suck. I’m probably over 9 weeks now and feel great! So glad I got the J Pouch. Good luck!

  23. shelly in maine October 25, 2012 at 3:25 am #

    :-) :-) :-) keep it up! Both of you-kudos! Best, Shelly

  24. Lisa OH
    Lisa October 25, 2012 at 6:12 am #

    Wow, Mrs. Huds. You are a saint! Mr. Huds is lucky to have you, you take such good care of him. He’s been through so much and so have you. So glad that thing is OUT!! I was diagnosed Dec 2011, no meds worked, colon became toxic so colectomy Feb 2012 – 3 step Jpouch. It’s rough, and I feel for you both. But (pun intended), you are AT the light at the end of the tunnel. Woo hoo! Way to go!!

    • Mrs Huds November 7, 2012 at 7:35 pm #

      Shelly, Blake, Lisa thank you all. His butt is on fire, but he says he’s ok. Actually, “doing the best he can”. He’s trying to help around the house. He’s putting on a little weight and normally, I’d be ecstatic, but his butt burn is making him no fun at all. I thought we’d be able to drive away for a break, but it doesn’t seem like it. I’ve been watching him like a hawk to make sure he doesn’t have a fever. None so far. Any idea on how to beat the burn?

      • Blake November 7, 2012 at 8:08 pm #

        Use calmoseptine lotion after every bathroom trip. I would use diaper wipes to clean, toilet paper to dry and then put some calmoseptine lotion on it. I ended up getting a bidet a little while ago. It’s awesome. I still get the occasional butt burn, but it has gotten a lot better, especially since the bidet. Since he’s planning on having a J Pouch for life, you may want to look into one. Would be a good investment. Helps cut back on tp too. Sounds like he’s doing pretty good other than the butt burn, which is totally normal. So happy for you!

  25. Mrs. Huds December 18, 2012 at 3:07 am #

    Hey you guys. Sorry it’s been so long. I must say he’s better. Not great, but better. He’s eating more and more active, but he’s still going a lot. I think he’s afraid to go to sleep because of accidents. I told him that as long as the water bill is paid and the washer and dryer still work, who cares. He’s still a touch grouchy, but that’s better than before. We’re working on the whole gaining weight. The calmoseptine is giving him some relief, Thanks Blake! I have yet to get the bidet, not sure if that will be his Christmas gift or not. I’m so excited that our kid is interacting with him WAY more. She was out of school sick for a week and he took care of her! That’s major. Better yet, I got sick and he’s taking care of me too! In fact, he’s the only one not totally sick in our house. The gov approved his disability, so he’s not worrying everyday about running out and finding a new job. What a relief. I never knew my year would turn out like this. What a year! Thanks all of you for being such a great support! Blake I see so many people are still asking you for advice. Keep up the good work. Talk to all soon.

    • Lisa OH
      Lisa Kapp December 18, 2012 at 6:52 am #

      Mrs Huds,
      Glad Mr. Huds is up and at ’em a little more. Hang in there, sounds like he’s improving slowly but surely:)

    • Blake December 19, 2012 at 10:19 pm #

      Thats great to hear! Glad he’s doing so well. The accidents at night suck, I feel his pain. I have good news to report about that. I think it’s probably been 2 weeks since I had an night time leakage, so something is going right. So it takes time. I’m glad to hear he’s getting back to being more of a dad. I felt the same way. It’s nice to be the one helping out rather than the one that needs all the help. Yes, questions are flowing in, hard to keep up and I don’t have all the answers. Maybe you, Lisa and I will become experts on J Pouches in another couple months.

  26. Mrs. Huds December 18, 2012 at 3:12 am #

    Oh… we all took that road trip! It was great! We are planning another one. Not a thirteen hour one though. Maybe to the beach in the spring?

  27. Mrs Huds January 12, 2013 at 6:55 pm #

    Blake,
    Send the questions my way. We are ready. No more night time leaking. He’s feeling so much better.

  28. Laura T January 23, 2013 at 5:32 pm #

    OMG.

    I’m not sure whether to be happy to have found people in the same or worse situation, or cry some more!

    This weekend whilst changing the bed covers I just broke down and sobbed for ages. After 4 years of dealing with life since my husband was diagnosed UC I just don’t know how I can cope any more.

    I know it’s not me with the pain, the bleeding, the anaemia, the fear of not having a toilet in time……but it is me that works full time, cooks all meals for fear of what’s contained in anything ready made, copes with the guilt that I’ve fed him something that has caused the flair up to get worse, that deals with running the house,sorts out child care, listens to how bad he’s feeling continuously and deals with the total lack of intemesy since he has been on the cocktail of drugs perscribed.

    1 year, 2 years, 3 years, 4 years and I now realise this will never end.

    Tomorrow is my 40th birthday. This morning he announced that although the flair up was getting better, since the pie I made on Sunday he’s been worse again and that he was going to request a new specialist.
    So I feel really bad – it’s down to my pie, am totally deflated because he was a bit better.
    I was looking forward to a nice birthday meal, but now I am just feeling guilty.

    I so want to have a nice, romantic meal and a bottle of champagne, laugh, enjoy life. But realistically that’s just not gunna happen. Wel’ll both be concerned about the menu, if I want champagne I’ll have to drink the whole bottle myself and instead of an item ate evening I’ll have to lay in bed listening to him suffering in the bathroom.

    I am sorry if you think this is selfish. I do, so you probably will too.

    But I can’t hold back my feelings any more and now I don’t know how to deal with that on top of everything else I del with. Any suggestions?

  29. Mrs. Huds January 24, 2013 at 1:55 am #

    Laura,
    Let me make something perfectly clear. That is not seIfish. It is perfectly normal to feel, well frankly, a lot. It’s exhausting to have to do everything. Also, it wasn’t the pie that started the flair. The flair was going to start regardless. Have you considered getting his colon removed? Also, have you looked into the SCD diet that Adam talks about on this site? Where are you? We certainly need to find you a Better GI team. There is no reason for this to go on so long. My hubby suffered and the last two years was because his colon was necrotic. What helped me was friends and his dad. My coworkers listened to me vent and took me out every once in a while. I don’t know if you have children? If you do, is there someone they can hang out with on playdates? It may be embarrassing at first or awkward, but you need at least a couple of hours time a week/weekend, just for you. I’m guessing there’s no time for you to exercise because you’re too busy doing everything else. I get it. For just once, you’d like to come home to a home cooked meal that everyone can eat and ENJOY. You’d love nothing more than for your mate to feel better long enough to even look at you like you’re the woman he couldn’t keep his hands off of, from the not so distant past. In the rare instances where you two do anything remotely intimate, something happens and you feel instantly guilty. I know this all too well. You think your days of being or feeling like a desirable human being are done? The days of having a good drink are done, because you have to be sober in case you have to rush him to the hospital or if one of the kids need you? I get it. This is what you do. On your birthday, you May have to take yourself out to eat. I’m so sorry. Can you do it during the time you’d normally be at work? You have to invest in yourself. I know there doesn’t seem to be an extra hour for you. Get your done. Hair done. Do one thing for you. I hope this helps. There are people at your work or church who can help you. If you’re anything like me, you’re afraid to have anyone come to your house because you’re afraid it smells of poo, or that you’re too tired to clean it properly. Laura, please don’t feel guilty or like your being selfish for wanting your normal life back. You are doing the best you know. You are doing an excellent job.

  30. Mrs. Huds January 24, 2013 at 2:03 am #

    Also, I totally forgot to say.. .. HAPPY BIRTHDAY!!!! Many happy returns of the day. When you start to feel like things aren’t going your way, remember, you made it this far. Today is a special day because today is your birthday.

    • Laura T January 24, 2013 at 3:15 am #

      Thank you so much for your messages it means a lot and good to know its normal!

      I will look through Adams diet. We’ve tried so many different things!

      I’m in the uk and have finally persuaded my husband to book a private appointment, which is in a couple of weeks. Fingers crossed we can get an improvement.

      The thought of a colostomy bag is a bit too much to cope with at the moment. I was an auxiliary nurse when I was 16 an had to change them. The vision of the wound and smell has stayed with me all these years!

      Really do appreciate you taking the time x

  31. Mrs. Huds January 24, 2013 at 5:09 am #

    No problem Laura. I how a poo bag could be the most difficult thing in the world to deal with at 16. Right now, this is life or death . Ostomy bags aren’t as difficult as poopy diapers to me. I hope your private appointment goes well. Please keep me posted. If you need to talk, let me know. I’m in the US, so I’m not sure how the phone thing will work, but email is a viable option. Have you also thought about planning your meals for the week? I’m just trying to think of small things that will help.

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