Is there anything I can do to help my husband?

I would also suggest you get copies of ALL the testing results for your records.

q

Update! : But first thank you to everyone for all the advice and kind words. Everything has been very helpful, I know very little about Colitis and my husband is having a rough time. It means a lot to me for everyone to have given me so much advice and info already. Thanks again! But heres the update : Even thought this morning was awful to say the least, today has turned out to be overall positive. After Josh's CT scan he was able to get some much needed rest, while he was resting I was able to talk to one of his nurses. I told her all about what happen before and she was very upset about how his other nurses handled everything and even told me to write a letter and give it to the supervisor! But After a long wait a new doctor came to see Josh to discuss the CT Scan results and to do another exam. His official diagnosis is Pancolitis, his whole colon is pretty badly inflamed. The doctor said he wanted to do another blood test and also said Josh's iron was very low. He put him on methylprednisolone which he will be getting through his Iv and put him on bowel rest and said he is going to keep him on the Iv for fluids for a while, he also gave some ointment to help with all his irritation on his anus. Josh asked of course when he could go home and the doctor said to plan on staying at least another week. The doctor is transferring him to a different floor and I am just going to take 2 weeks off work to stay with him around the clock (My brother owns the company I work for). This may not be the news we were hoping for but at least now we have some info and he is now being treated! Also the doctor he seen tonight is going to start seeing him, we were both pretty impressed with the doctor. Josh is starting to feel a little better already and is finally able to get some much needed rest, but still embarrassed. This has honestly been an emotionally draining day for him. I am trying to read him encouraging comments and what not but he is so ashamed over what happen this morning he isn't listening to much. I have tried to explain it wasn't a big deal and wasn't his fault but he still feels awful about it and keeps saying how sorry he is. It is really heartbreaking to see him so upset and sick especially at the same time. Any tips on anything I could do to help would be great? Also is there anything else I should ask his doctor or anything I should be concerned about? Thank you all once again for all the helpful tips and advice!

Glad that its working out. I wish you both good luck. Keep stress at bay as much as you can, its one of the contributing factors. Now that you are frequenting here, read signatures of others and see what supplements they are taking. May be you should consider talking to Josh about these supplements once he is home.

Glad to hear today is going better you guys really deserve better days and they will continue. Im surprised they have not started him on prednisone? That inflamation needs to get under control like yesterday!

hi there I am glad that Josh is finally getting better care. I hope it continues. Take care of yourself too:)

So glad things have gotten better and I'm really glad you said something to someone about the nurses dispicable behavior. And I would write that letter too. Hope things continue to improve and your husband keeps feeling better. He may not want to stay in the hospital but with as bad as he got its what is best for him. Keep us posted.

I just read thru all the posts and all I can say is wow! What an ordeal Josh is going thru. The poor guy :( If he has internet, please, please tell him to come talk to us! We have all been where he is now and we can totally relate to everything he is going thru. He should never be embarrassed over this - this is not his fault and it takes a while to remember this, but EVERYONE poops! :) He should not feel bad for something he can't control. It is VERY disheartening to have accidents as an adult, but hey these things happen!

I am so pleased to see that you are coming on the forum on behalf of your husband. It's awesome to see the kind of support you are giving him. Support is what we need especially in trying times.

Thanks again for all the encouraging words, but unfortunately I have a not so great update: The bottom line is Josh has Toxic Megacolon, if he dose not show improvement "soon" he will have to have surgery. He is now at a much bigger and better hospital. He is in a lot of pain. I am on here trying to calm my own self down and not show him how upset I am. Here are the events of the day: Sorry if any of it is To much information!!!

*Josh started having a lot less bowel movements yesterday after he started vomiting. We thought this was a good thing, apparently not. The last one he had was about 4 p.m. yesterday. He seemed to be feeling a little better last night and even felt up to playing a game of Chess with me. He fell asleep around 9 pm last night but woke up around 4:30 am in extreme pain. His biggest complaint was that he felt like he "Needed" to have a bowel movement but couldn't. He went and tried for almost an hour but his pain just kept getting worse and worse. He pulled his gown up and asked me if his belly looked bloated, and it did. He then told me it hurt to even touch it. I thought it best to get one of the nurses and pressed his call button. 10 minutes later the nurse came in and asked what was wrong. Josh told her and she left. A few minutes later she came back and said she had talked to his doctor and the doctor wanted him to have an enema and told Josh she would be back in a few moments to give him one. She came back in and asked me to leave the room, Josh grabbed my hand and asked me to PLEASE stay, the nurse told him that was against policy and I would have to leave. I left the room and with in 5 minutes heard horrific screams. Josh was begging her to stop the enema. I went back into the room only to hear her trying to tell him to "just relax, its not that bad", I couldn't even think straight I was so mad, there he was in unbearable pain and she just keep trying to get him to take more of the enema, the bag was already over 1/2 way empty! I told her right then to stop the enema and to stop it now! Josh was screaming even more at this point and it was obvious he was in extreme pain. As soon as she pulled the tube out I told her to get him some papers because I was transferring him now! That was the smartest thing I have done during this awful nightmare. Poor Josh was still hurting so bad he couldn't even move from the bed so I went and got him a bedpan to use and when he eliminated the waste it was just blood and water no stool at all. I was concerned but just figured it was from the fact that he was on bowel rest. I ended up being able to have him transferred to a bigger hospital about 9 am this morning. As soon as we got there they done blood test and x-rays and a physical exam. They noticed his blood pressure was low and his fever was now at 103.7. And with in maybe an hour and 1/2 the told us that he had toxic Megacolon. They were really fast and started him on an Iv fast and then put a NGT tube in to help with the "decompression". They also got him to do some rolling exercises to help with "decompression". He is now currently taking a few different medications here is the list : Zofron, Remicade, Prednisone (Which the new doctors couldn't not believe he wasn't on before...Cadillac lover you were right!) and a antibiotic I cant remember the name of but I know he is on one, its just not on his list?. He was also put on complete bowel rest and bed rest. He isn't to move out of bed no matter what, unless one of the nurses give the "Ok". They also are doing blood work every 2 hours and he has a catheter in so they can keep an eye on his urine. He is doing alright at the moment just very uncomfortable, and very nervous, he is trying to get some rest but is unable to really get any. Hopefully he will show improvement soon and wont have to have surgery. That is his biggest fear. I hate to bother everyone on here but I am extremely upset and feel like I have nobody else to talk with about it all. His mother is currently on a cruise and wont be home for another few days and Josh is still so embarrassed I hate to tell anyone else details that knows him personally. Thank you to everyone for all the encouraging words and suggestions. It has been a blessing. I know my husband will really appreciate all the advice and is enjoying hearing all the supportive words(I read it all to him earlier). Any more suggestions on what I could do to help him? Anything we need to bring up with his doctors? Thank you all again so very much!!!

I am so sorry about what your husband is going through :( Sending hugs and positive thoughts to both of you! You are clearly a very loving, supportive spouse, and he is lucky to have you in his corner!

I don't know where to begin after reading these posts! I can't believe what he's been going through! It's downright crazy! Oh, I can imagine how he's feeling.

I had gotten to a bad point as well in 2008, in the hospital for a week. Had to get a blood transfusion, they kept me sedated on morphine to help with the spasms, put me on antibiotics and steroids as well, while on IV. Yes, I lost weight also, went down to 95 pounds.

I hope they can get this calmed down right away. I know it's difficult but to do your best in comforting him, in trying to keep calm also because it must be making it more stressful for his colon as well. And to explain the truth.

The hospital here on ON, let's family members stay overnight with you if you want, but only 1 person for as many nights as they can accommodate, respecting other patients in mind. And sometimes, it's just in a "at least" comfortable big chair.

And demand professionalism minus the "comments"from them! That's what they are there for also, to do their job.

I wish the best to your husband, and to you for staying with him through this. Stay strong!

bmb12....

Oh boy. I am not sure where to start. I have read your post today and my heart has just sunk a little farther with each addition. I know how hard it is watch a loved one going through something so terrible and you not feeling that you know enough of what to do to help them. With me it was my son, with you it is your husband. What comes through so clearly in your posts is, even though you may not know it, you are doing EXACTLY what is needed. The fact that you changed hospitals is heroic and you should be so proud of yourself!

It seems like you really are in the right hospital now and Josh is in good hands. Hopefully they can get the inflammation to settle down. Have they spoken to you about methotrexate? If the IV pred does not do the job that is usually the next option.

I am also here to give you a different perspective on surgery. I know it is a terrifying thought, especially since this has all come on so fast. My son Dillon, also became very sick and even thought we had already thought somewhat about surgery, the decision was taken out of our hands and over a very sort period of time he had his colon removed. It was very scary at the time, but I cannot tell you the profound relief to have him wake up and see the health return to him as if by magic....everyday following surgery he just became healthier and healthier. It was a long recovery and Dillon had a few surgeries, but he has now had a working J pouch (where they make an internal "pouch" out of the small intestine, connect it to the anus, and you pretty much poop normally) for about 2 years and he is doing SO WELL. He is healthy in every way, on no meds and living life exactly like a young person should. I am sure that your doctors will start to talk to you about the possibility of surgery and I just want you both to know that it is not the end of the world.....

You both are in our thoughts. How truly fortunate your husband is to have you by his side!

All my best,
Cathy

I'm glad your husband is getting more professional help for his problem. His ordeal sounds very rough and I'm hoping the worst of it is well behind him.

I understand you may wish to complain to the first hospital your husband was in. My experience with hospitals and health care programs in the U.S. of A. is that these organizations have a patient advocate office. The few times I got the run-around from my health care provider I contacted the patient advocate. You may have to listen to some nonsense first, but with patience and clearly stating your issue and problem you can get results. For example, I have been able to get co-payment refunds and prompt appointments for pressing medical concerns.

Best of luck.