My spouse suffers severly from Crohns

[missmackenzie1]

This is my first time posting on a forum and I am hoping to get some feed back as to what we should do.

My boyfriend Justin is 26 years old and was diagnosed 3 years ago with Crohns. The kicker is that he also has MS so he is not able to take most of the treatments for Crohns due to him having MS. Every few months he has to take steroids as they are the only thing that help. The last week things have got much worse that I have ever seen before. He goes to the bathroom about 10-25 times a day, always diarrhea and LOTS of blood. He has started throwing up everything he eats and drinks and cannot keep anything down ( the puking just started a few days ago) He has sever cramps and can barley move at times.

We went to the emergency the other day because his nurse was not returning our voicemails and the ER was not helpful at all. They gave him fluids and sent him on his way. could not tell us why he was throwing up. He has a colonoscopy booked for this upcoming Thursday by his GI thanks god so the ER just told him to wait until his scope.

To me his Crohns seems sever because is have never heard of the symptoms being this bad. He is only 26 years old and I feel so bad for him. I can only imagine how he feels. Every time we see his GI he just shakes his head and says there is nothing to do but steroids but at the same time he already has onset osteoporosis due to the large amount of steroids he has had to take over the years.

His MS is in remission and has been for about 6 years thank goodness because I don't know how much more we would be able to handle. I guess we just feel hopeless..... any suggestions to help ease his pain or manage the symptoms better. And does Crohsn usually cause throwing up and not being able to hold any food or liquids down? We think it might be an ulcer?.....

Thanks for your thoughts and fed back

 

[GutlessWonder86]

As a female Crohn's patient since the age of 12, I honestly think that your bf should find another GI because there are other options out there besides steroids to treat Crohn's such as Entocort, Imuran, 6MP, Humira, Remicade, etc.

Crohn's can cause abdominal pain, nausea/vomiting if there is a partial obstruction, low grade fever, join pain, liver issues due to certain medications to treat IBD, blood in the stool, the big "D" or "C", and fatigue. Check out this site for spousal support group to get more information.

Symptoms will vary in each patient. Steroids can cause serious side effects if on them for a long time such as glaucoma, osteoporosis. If he's in pain, he has that right to ask for pain medication until the flareup is under control. If the GI refuses, ask your BF's primary MD.

His GI needs to be updated on the newer treatments. Steroids is a thing of the past because of it's long term side effects.

 

[CrohnsChicago]

Hello and welcome to the forum,

Crohn's is a lot to deal with on it's own. I can only imagine how stressful it must be to also be diagnosed with MS. I am glad to hear his MS is in remission though as it makes things a little easier on him.

Bleeding is a common symptom for many with crohn's. The severity of bleeding depends on each person and the severity of the disease. It is very good that he has a scope coming up. The scope will hopefully give you more answers and will help to find the source of the bleeding.

And, yes, crohn's can cause vomiting. Crohn's is not limited to the intestines. It can affect any part of your digestive tract from your mouth to your anus. The following site can help you understand more about crohn's disease and the different types of crohn's diagnoses there are:

Types of Crohn's Disease (<<Click on the link)

Soruce: http://www.uofmmedicalcenter.org/healthlibrary/Article/82153


I'm very curious since it is not mentioned in your post, what crohn's medications besides steroids has your boyfriend tried over the past three years and is that the only thing he currently takes?

I'm not sure what medication he can and cannot take for crohn's that won't interfere with his MS treatment plan, hopefully the two of his doctors are in communication with each other. If it seems like things aren't getting better, it may be beneficial for your boyfriend to get a second opinion from a different doctor on the matter.

As far as supporting your boyfriend, I think it is awesome that you would come to a site like this and ask for help. It shows how much you really do care for him. Just letting him know you are there for him and maybe offering support where needed (picking up meds, doing house chores he doesn't have the energy to do, taking him to doctor visits and just being a listening ear) can be enough. I know it's hard to understand the extent of his pain and discomfort if you are not experiencing it yourself so even things as simple as the above mentioned mean a lot to someone dealing with a disease that often leaves you feeling isolated from the world and very alone.

 

[missmackenzie1]

He has tried to take imitrex and Imuran as well as a few other medications. They all effect his liver to harshly, once he has been on htem for a few weeks the doctors pull him off because they are worried and plus with him having multiple sclerosis a lot of the medications that are used to treat crohns would cause his MS to flare up so the doctors would not prescribe them. We have seen about 3 GI's and the one we have now is very knowledgeable and is the head GI of the University of Alberta. He has been offered Tysabri but he tested positive for the JCV virus so he does not want to risk taking tysabri which I don't blame him. His GI has also suggested a colostomy bag but my b/f refuses to do that. He was offered pain medications but he is worried about masking the pain. HE is just really scared that he is going to perforate his bowl. I think if it is not any better and he is still throwing up then we will go to the hospital in the morning. The only reason why he doesn't want to go is because of the way they treated him when we went a few days ago. It was horrible service , I hate the healthcare system here. Everyone is too busy to give him the attention and care he needs.

 

[CrohnsChicago]

That really sounds like a terrible situation to be in. Given the fact that he does have MS and treatments seem to either be ineffective and/or he cannot take them without interfering with his MS, it would make sense that his doctors would suggest surgery. It is one the options they usually save for very severe cases and when medications do not work.

I would see if you can get his doctors to discuss the risks/benefits of having/not having surgery further. It's really hard to say what he should or shouldn't do because he does have MS which makes things much more complicated than if he simply had crohn's.

I'm terribly sorry he is in this situation. I know surgery is scary but if all options have been explored and he can't find a doctor who is willing to maybe try an alternative treatment plan on him it's really hard to say what else there is to do in his situation. Since his current GI is the head doc of a university, they should be aware of any clinical trials available to your boyfriend as an alternative to surgery. I say have his doctor go through ALL of the options available to your boyfriend and do some extra research on his own to try and come to a potential solution if he is committed to not having surgery.

But if he has been to many doctors and surgery is continually suggested and his crohn's and bleeding is severe and he is not getting effective/proper treatment even with steroids (BTW has he ever done steroid infusions?), it may eventually come to a point where he winds up in the emergency room and wakes up with a portion of his digestive tract removed in an effort to prevent life-threatening complications. So the bigger question would be does he want to have a choice in the matter or does he just want to wake up one day and find that the decision was made for him?.....

Just get the scope done first and see what the results say. That's the best advice I could offer. it will help him decide what his next step should be.

Best.
CrohnsChicago

 

[missmackenzie1]

Thanks for the support and recommendations. He is feeling much better this morning after a good night sleep. He has not thrown up yet which is a good sign but he hasn't ate yet either, hopefully after some breakfast he will still feel fine. I was up all night doing some research and I have made an extensive list of items and questions to discuss with his GI after the scope on Thursday. I was never able to make it to any of his previous scopes as it was hard to take time off work but I am glad I am going to this one and I am going to make sure to be thorough with his doctor and get as much information from him as I can. I think we will discuss a resection to see if this would be an option. We know that he has 2 area's that are really inflamed. One area near the bottom of his colon (this is why he bleed so much) and another area in the large intestine right where is bends. hopefully a resection would be a good option. I am also going to ask him about 6MP but I know the biologics aren't safe for him because they have previous caused liver information and he has had pancreatitis before because of these medications so we will see. Heres to hoping Thursday goes well