Is there anything I can do to help my husband?

Ok Ill start from the beginning. My husband is 22 years old and has had Ulcreative Colitis since he was 18, he was diagnosed after we had been dating for about 2 months. So I have been there from the start. At first he didn't take his condition very well at all and was very embarrassed to talk about it to anyone. He has been hospitalized once right after he was diagnosed but then starting taking Asacol. And up until about 3 months ago everything seemed to be under control, since then things have started to get pretty bad for him. He is constantly having flare ups and has started Rowasa Enemas, Which he is very unhappy about. He is having a lot of pain and has only taken 3, he was hurting so bad after the first one (from what he said it hurts to even get the tip inside his butt) he asked me to "help" him. In the past 3 months he has also lost about 30 lbs and he was pretty thin to start with. He has also had quit a few "accidents". Today was probably one of the worst. He thought he was finally starting to feel better and begged me to take him to the mall to get a new video game, 1/2 way to the store he had an accident. He was so humiliated. I feel awful but I don't know what else I can do for him. Is there anything that could maybe help his situation? or anything I could be doing differently to help?

His old gi doctor passed away a little bit ago and he was seeing another one but was very un happy with that doctor so now, He is waiting another 2 weeks to see a new one, but I talked to him last night and if the bleeding keeps getting worse he is going to the ER sooner. He is really hoping to avoid the prednisone, he was on that the first time he had a bad flare and the side effects drove him crazy. And as far as his diet he was eating more healthy before he starting to feel so bad, now he is hardly eating anything at all. & Thanks so much for the advice :)

As CadillacLover has already said, we ALL have been through this. He is in serious flare, enemas are not going to get flare under control. He needs Prednisone. Once flare is under control, enemas are used for maintenance purpose. And frankly, at this moment, you can not do anything to help your husband but to give him emotional support. Please make him realize that you are ok with his condition (this is very important) Can you get Prednisone prescription over the phone from the doctor? If yes, get it. Try to convince the doctor that you need it or do go to ER. Its not worth suffering this pain.

Now, learn a lesson from this incident. Keep a stock of Bentyl and Prednisone at home. If not at home, have prescription in the pharmacy so that you can have it as and when you need it. This is NOT the best advice as you should not use Prednisone without doctor's advice but most of us here are so used to this that we just 'learn' when we need Prednisone. Bentyl will help him avoid accidents. Oh yes, this is what you can do, buy him Lomotil or something similar that stops diarrhea (talk to pharmacist). This will at least avoid accidents, if he wants to go anywhere. When I am in flare, I sit at home all the day due to urgency and fear of accidents but when I do have to leave my place, I pop in 2 x20mg Bentyl and that stops bowel movement almost completely.

With food, many folks avoid some foods. Personally, I do not. I gave up on alcohol when I started Azathioprine but I eat everything in moderation. He MUST eat even if he is in flare and has abdominal cramps.

Finally, read up on this forum. There is tons and tons of information available here. When I was new, I read up almost all possible threads and learned a LOT of stuff that helped me in the long run. And still, if you have any question, we are just a click away.

Good Luck.

Keep us up to date. No reason to be nervous, dont need extra stress as stress is a key factor in bringing flare ups in the first place. He should get on this forum himself and start understanding his condition and paying attention. Seriously his colon could have to be removed if he doesnt take care of himself. Oh yea dont drink ANY alcohol while flaring!

Hi bmb12, Welcome to Healing Well.

I agree with what has been said. He definitely needs to get in to see a GI asap. It sounds like he has really bad inflammation in the rectum if it hurts to insert the tip of the enema. He may do better with a hydrocortisone enema, he may also have something else going on that is causing some extra pain, like a fissure. Those can also be helped by cortifoam or suppositories.

It sounds like you're very supportive of him and that is truly wonderful. I don't think there is anything more important than being there for him and being understanding of his condition. As for diet, I think avoiding artificial sweetners helps the majority of us. Is he taking vitamins? Most UCers are deficient in vitamin D, it would probably be good to get him started on a supplement.

It's too bad he can't get into the new GI for 2 weeks. Perhaps you could call and get him on the cancellation list? He may need a course of prednisone or maybe he could change to a different mesalamine medication is Asacol is no longer helping him.. I was in the same boat, Asacol stopped managing my UC. I tried to calm things with prednisone but I couldn't taper off without having symptoms return. After much denial, I started 6mp and I have been feeling better since. I still have ups and down (bad days and good days) but so far, the downs have been manageable.

Another thing, if he is stressed, he may benefit from speaking with someone and possibly treating the anxiety and stress.

Well heres an update while he is asleep. We got to the ER and they decided to admit him. He was very dehydrated and they seemed very concerned about when I told them how much weight he has lost. Also before they could get him to a room he had another accident in the middle of the ER. As of now they have done a blood test, stool test, and they examined him, tomorrow morning they are planing to do a "scope" (not exactly sure what the doctor meant when he said that, he is coming back in a bit). When examining him, he doctor seemed to think it was odd he was in so much pain just from being touched on his anus, He was almost in tears before anything even went in. But the doctor is also not giving us much info at this point. He just started him on an Iv for fluids and pain meds and told him not to eat or drink anything. Dose anyone have any info on what could be going on? I am starting to worry, I knew it was getting serious but I was shocked to see they admitted him and the doctor seemed so concerned. But for now I am happy that he is at least getting some rest and I was able to stay and help him. Any tips on anything I could be doing to help him more? He seems to be really upset about everything and is very embarrassed, He isn't even wanting to answer the doctors questions!

Maybe he has a bad hemmie? Just a thought...when I had one that got really bad I couldn't use the enemas...heck I could barely sit or walk for that matter. My doctor said I could have had it treated so if it ever does it again I know to call her and she can refer me to someone who deals with that.

Don't worry. I don't see anything abnormal. I have been through everything you have mentioned. When I am in flare, my bottom / anus gets so irritated that I can't even sit properly, so I use local anesthetic, 2% Xylocaine cream and it does the trick. It pretty soothes the tissue and anesthetises, relieving me of the pain.

Before the 'scope' thing starts, ask doctor what is he gonna do exactly. If you don't understand a single word, ask again. Don't let it happen without you understanding it completely. It sounds like your husband is not in mood/condition to do this job. As Mr. Natural said, you are doing absolutely phenomenal job, hats off to you. Your husband is a lucky guy. I am in the same boat with Mr. Natural when it comes to our better half's responses.

Before you leave the hospital, make sure to get the prescriptions I told you previously. Talk to the doctor if there is any way he could avoid enemas. Its possible, if he gives him oral Prednisone but its finally doctor's decision after the 'scope', for where actually the inflammation is. Yes, ask this question as well, if they perform colonoscopy, where is the inflammation and how much. If they are taking any biopsies. If the inflammation is more than 10 cm from the rectum, most likely they won't give him enema (as it doesn't work beyond that due to the distance.)

BTW, do you know pain meds he is on? Is it IV pain med or he took a tablet or something. Please ask the nurse and report us, I am very curious what they give here in the ER. (When I was in the ER for my kidney stone, I was given Morphine and then I learned why junkies like it so much :)

Ok, Heres another update. The first doctor requested that a specialist come and have a second look and give some advice. The specialist came in and done another exam and this time used some kinda of anascope(?) or something like that, (which my poor husband found extremely painful and was actually in tears the whole 10 minutes of the exam.) And then decided that since everything appears so inflamed it would be better to do a sigmoidoscopy and a CT scan in the morning, instead of a full colonoscopy, but did say as soon as everything appears a little better he would defiantly need one done. I asked about the different medications and was told that it would all depend on how everything looked tomorrow but the specialist said his rectum seems very inflamed, so from everything I read I am guessing he will still be stuck with the enemas or at least some suppository's. After getting some fluids from the Iv and a little rest and a lot of pretty good pain medication, my husband is feeling a little better. But is still having accidents and a lot of blood, which his nurse has brought him in some adult diapers and now he is even more upset and embarrassed. He is also starting to seem very anxious about everything tomorrow and isn't able to get hardly any rest now, he is waking up ever 20 minutes at least. I tried to make him feel better, but I don't think much can help at the moment. I am open to any suggestions though? And Thanks y'all for the advice and encouragement. I don't know very much about his condition yet but I am trying really hard to learn more and to be as supportive as I can be. Any more advice or suggestions are greatly appreciated!

*And the pain med is Dilaudid - Which I have never heard of, but its given through the Iv and he seems to think it is working pretty well.

I'm sorry your husband is going through this. I know it's difficult and embarrassing. The most you can really do right now is be there for him and reassure him that you love him. I really hope he gets better soon and please update us on his results when he is finished with his testing.

Heres another Update! Delataforce, I wish I would have read your post sooner. The sigmoidoscopy went awful. I don't think it could have gotten much worse. They gave him something (I cant recall the name at the moment) that was suppose to help relax him, it made him very groggy and slowed down his movements a lot. I was shocked but they allowed me to go into the room with Josh (my husband) for the procedure. The doctor came in and there was 2 nurses and an intern in the room. Once the doctor started to insert his finger Josh right away started to complain that he had to use the restroom. Before the doctor could even get his finger all the way back out Josh had a very bad accident on the table. I was extremely disappointed in how the nurses handled this situation. Instead of trying to clean Josh up (he was pretty groggy and wasn't able to move by himself) they started cleaning up the area around him, I guess they were just going to let him lay in the stool and blood?!?. I of course asked for a towel and started to clean him up, after getting him as clean as I could with him still being on the table I has to ask one of the nurses to help him stand. She proceed to help him stand and helped hold him up while I tried to get his legs and backside clean. Without any warning or anything he had yet another accident. This time I ended up with most of the mess on me. I tried to hide it from him but he noticed and was understandably very upset. So once I was cleaning him for the second time I noticed his anus looked very red and irritated and puffy much worst then it had been last night, I asked one the other nurses for something to use to help with that. She left to go get it and by now the bed was clean so the other nurse had him lay over the bed with his legs spread and she came to look to see how badly irritated he was. A few moments later I heard someone laughing. I turned around to see the nurse had left the door open when she went to get the cream! There were 2 teenage boys there that had a very good view of my husbands completely exposed backside! Josh noticed as well and started to get so upset he started vomiting and crying very hard. By this time the doctor came back in and said he didn't think the "scope" was such a good idea?!?! and said that he was just gonna send my husband for the CT Scan instead. The scan went much better and since then they have uped his pain medication, and he is currently getting some rest. We are now waiting to see the results of the scan. I am very very upset with how everything was handled. And after reading Deltafoce's post I feel the doctor should have known this was gonna happen! Josh was pretty much humiliated for no reason when it could have been avoided from the start! I am seriously considering switching him to a better place. Any suggestions on what I should do to help him medically and emotionally? He is now more upset then before by a lot. He cried himself to sleep. I feel so bad for him but am not sure if there is anything that can be done to help now. Thanks everyone for the suggestions again!

Oh how terrible for you both. And how awful of the nurses and doctors I can't believe the nurses acted like that. Depression is pretty common for people with chronic illness and your husband has had to go through a big trauma (as have you). He might need some counselling. He is so lucky to have you.
Please keep us updated. I hope it gets better from here.
All the best to you both.

I am so so sorry that you just ended up with the jerks. These folks are pathetic but don't yell at them, get your job done first. Forget those teenagers, they are {deleted} anyways. I totally understand the humiliation. I felt exactly the same way when I complained at work that I have abdominal pain (before official UC diagnosis) and I am just not able to work. I was close to crying and my boss said, how do you get abdominal pain? I thought only girls get it. So those who fail to understand our situation, I REALLY DON"T CARE about THEM. For the medical staff, I won't say that they acted very professionally but your complain won't be taken seriously either. So don't waste your energy. Your goal is get his flare under control, forget the rest.

You can not do anything to help him medically. You can only help him emotionally. If possible, read him out our posts. Let him know that he is not the only one or the first one that had an accident. It was the doctor who was stupid (yes, he really was) to administer him sigmoidoscopy without the drug or telling him what will happen. Nurses were unprofessional (no ethos of the profession) So forget everything that has happened. I really hope that he jokes about this later in his life (as I do) If you are too upset, tell them that you want to give a feedback, who you should talk or address to, 'just before' you leave ER or hospital (I don't know if he is still in the ER or admitted to the hospital) and write a very professional short letter. Ask for an investigation and you should be updated about the results by postal mail only.

@ sherbear46,
I see anger in your post which is very valid but you live in a country where there are dozen laws for a dime. The ER I went to is of that a renowned hospital in my rich neighborhood, rents the ER staff from a staffing company (including the doctor) and I was like yikes. You are not in a country where you can demand good healthcare as you are just a subject. Having lived all over the world, I have seen 3 major systems closely now, namely the Indian, Swedish and the US system and my conclusion is, the Indian doctors are arrogant and you are a nothing but a guinea pig. They will do anything to pocket more and more money out of your illness. Swedes, extremely professional, where you can demand the healthcare and they WILL provide you (usually even without demanding) You are a human here and everyone treats you very very professionally. Even though the nurses are paid only peanuts, the way they care about you is remarkable. The nurses in the gastroenterology department knew me personally (not that I was regular there) and used to ask about my health even when we bump into the each other in the corridor or in the cafeteria. The US, little civilized and more legalized version of the Indian system, yes you won't like it comparing the US to a 'developing country' like India but its the fact. If I face a bad experience in India, I would yell, make a scene. In worse case, even attack the doctor using mafia (if I have enough money to bribe police). In Sweden, this will NOT happen but if it happens, I will write a letter to concerned person and request them to blacklist that staff from treating me (and it works) In the US, I will keep quite as I am no Micheal Jackson and all laws are against me. Apologies for my rant but my point is, if you are not Micheal Jackson, nobody cares what happens to you. Everyone here wants you to be sick and want to make a buck out of your illness.