My wife and I were married exactly one month ago today. We live in Houston, TX. Aprroximately 6 months ago, she started experiencing pains in her stomach. She was having a tough time at work, and some of the things that go along with planning a wedding were adding to her stress level and everyone assumed it was an ulcer, and tried to treat it. Over the summer, her mom, who has been fighting terminal cancer for 10 years, was hospitalized with an agressive new influx of her disease. Surgeries and months in the hospital followed, and the stress level for my then fiance was through the roof. During this time, my wife was hospitalized 2 times herself. Everyone still just assumed it was her ulcers and just really bad due to the stress level. After the second hospital stay, we took her in for some GI testing. She did all the usual, swallowing the camera pill, Barium in her system, etc. They came back and said they thought she had Celiac's disease. Well when those treatments did nothing, they then decided that she must have Crohn's disease. So for basically the last 3 months, we have been dealing with this as Crohn's disease. She has been put on medications (so many she has to carry a bag especially for all the pills she has to take all day) and is doing what she can to cope. She is in pain basically every single day. Every 7-10 days, she will spend an evening in a 24 hour emergency clinic getting fluids and trying different things to help her discomfort level, but nothing ever seems to have any lasting effect. She has also been hospitalized 2 times during the last 3 months. Her mother is doing much better now, and now that the wedding and all the stresses associated, we had hoped that maybe her Crohn's would lighten a little. So far nothing. I worry so much about her. She has lost weight dramatically. She never eats anything. Maybe a little cereal with nothing on it every few days, maybe a milk shake every once in a while, but other than that nothing. I know she has to be terribly malnourished, and extremely dehydrated. The doctors and hospitals just seem to bandage her up enough to get her to her next hospital visit. With all the medications she takes, addiction frightens me the most. On top of all the medications, she takes Ambien (sleeping pills) almost nightly just to get some sleep. I have read many of the other threads on here, and just thought I would post our story as well. Does anyone have any advice on what you or someone you know have done to help? Or doctors in the US who have a profound knowledge of the disease and can help? Basically her doctors have told her that there will be months of discomfort and experimentation to figure out the right medications and dosages, and with the technologically advanced medical system we have in todays world, I find it hard to believe that this is the best they can offer. How much more time does it usually take to get a treatment right? Should we expect more months of this, or even years before they get something to help level her out? Any advice would be great. All we can do right now is pray, and I try and do everything I can for her, I just hate seeing my beautiful wife withering away because it is such a chore just for her to get out of bed in the morning. I want her to have the quality of life I had envisioned for her as my wife. Also, has anyone ever been pregnant with Crohn's on here? We want to start a family in a few years, but I worry that she will not be able to. How is pregnancy for someone with Crohn's? Luckily, there is a new specialist in Houston for Crohn's, who specializes in Crohn's with pregnant women that she is going to see on Tuesday and maybe we can get some promising info from her. But there is nothing like feedback from others who have been through the same thing. Thanks for reading and thanks in advance for any comments and suggestions.
Wife with Crohn's.....Any Advice?
- Thread starter ccolley68
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fenway1971
Sports Crohnie
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Welcome to the forum. Nice of you to seek advice for your wife. Belated congrats on your marriage!
As you will discover, this disease is tricky and what treatments work for some, don't work for others.
What meds is she on currently for CD? I started on ASA drugs only to learn I was allergic to them. Then tried steroids and now on 6-mp.
I saw she eats cereal and milkshakes. Many crohnies find they can't tolerate milk. Perhaps oatmeal instead of cereal?
you'll find good advice and experiences here to share with her.
As you will discover, this disease is tricky and what treatments work for some, don't work for others.
What meds is she on currently for CD? I started on ASA drugs only to learn I was allergic to them. Then tried steroids and now on 6-mp.
I saw she eats cereal and milkshakes. Many crohnies find they can't tolerate milk. Perhaps oatmeal instead of cereal?
you'll find good advice and experiences here to share with her.
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If you have definately been given the diagnosis of Crohns they usually start you on Prednisone - a powerful steroid to reduce the inflammation - this usually works within hours and will give her some much needed relief...then depending on where the disease is and how much they may try an immuno suppressant drug like Remicade - so sorry she is suffering so and you will find many on this forum who have been through the same or similar...I personally had to go through about 4 GI's before I found the right doc. for me and who would listen and take me seriously and try different treatment options...I would also suggest she try some Boost or Ensure to get some sort of nutrients into her but without knowing her meds I can't suggest medications - Welcome to the forum and I would go back to the doctor and keep bugging them until they find some medication that helps her! Some times it is trial and error with meds and diet but eventually she will get some relief if she keeps after them ...I am on Cimzia - one of the newer immuno suppressant drugs and it is not working as much as I would like so back to the doc. I go next week ...Good luck and keep us informed on her progress..as for pregnancy I have read that most women can get pregnant but you would want to get into some type of remission first and get her weight up first ...
I know some of the ones she takes are Pentasa, Zofran, Phenergan, and about a half dozen others. I will snoop through her medicine bag tonight and get the official count.
Can I ask you guys a question, and you can or cant answer, depending on how you want? How do you cope with the disease, after the initial period? I mean, once you have been diagnosed, and they have treatments sort of settled, how is your day to day life? Are you regular enough to hold down a regular 9-5 job? Can you eat at restaurants? Sex? How does your daily life now compare to before the disease? Is it normal, or are you always on the lookout for a flare up? How often do they come? I have so many questions and concerns, I cant hardly get them all ou tof my head right now.
Can I ask you guys a question, and you can or cant answer, depending on how you want? How do you cope with the disease, after the initial period? I mean, once you have been diagnosed, and they have treatments sort of settled, how is your day to day life? Are you regular enough to hold down a regular 9-5 job? Can you eat at restaurants? Sex? How does your daily life now compare to before the disease? Is it normal, or are you always on the lookout for a flare up? How often do they come? I have so many questions and concerns, I cant hardly get them all ou tof my head right now.
CrohnieCarolyn said:
I have not heard of Prednisone. I will have to go through her medications to see. She went to see if she was eligible for Remicade, but she failed her testing for it. She has been a sickly girl her whole life. She was born with E-Coli, which has made her immune system poor, and has kidney diseases and Asthma and many other things. I will also have to look into Cimzia, may not work for you, but at this point, I am willing to try anything. Thanks.
fenway1971
Sports Crohnie
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ccolley68 said:
I'm familiar with Pentasa (ASA drug) but not the others.
Read this forum and you'll find answers to your many questions. For me, day-to-day life is back to normal after my most recent flare. I find I have to manage stress better, be disciplined about what I eat and always take my meds. That was a big change for someone like me who always thought I was invincible. It takes a long while to accept that this disease is chronic. Some cope better than others. With a concerned, interested husband by her side, I'm sure she'll do just fine.
Welcome! What a great caring hubby you are! One of the best things you have done for your wife, aside from just being there and being you, is logging on to this site. You will learn so much and get great support from everyone here.
At the beginning, and during a flare crohns is tough to get used to - major lifestyle changes and such a shock to the system. I hope she has started some pred, that could give some quick fire relief.
Eating, I know it's hard, I have had to promise my hubby I will eat one solid meal every day, but to my shame I cheat and skip if he is at work...
Definitely look into Ensure, it's very soothing and will help keep her nutrients up. Also, at the risk of making the meds bag even bigger, hit the heLth store for supplements - loads of threads on here to get some pointers...
As for daily life... It will get better,it's just a bit of a long journey.
Sex.... Well done for mentioning it - it's important and you are newly weds for godsakes! Speaking as a woman here, crohns has made me feel less attrCtive Ttimes if you get my drift... Having my husband help clean me up or look after me can pit a dampened on things, but... We still manage to have a loving relationship. Honesty is rEally important here, just today I reminded my husbNd that I still think he's a hunk, but that I felt like crap so rumpy lumpy definitely wasnt on the cards! He remembrs to remind me that he thinks I am gorgeous too - which is awesome because I k ow for a fact I look like poo!
Keep being you - you sound like awonderful caring husband, and you guys will get through this.
Keep us posted.
Lishyloo x
At the beginning, and during a flare crohns is tough to get used to - major lifestyle changes and such a shock to the system. I hope she has started some pred, that could give some quick fire relief.
Eating, I know it's hard, I have had to promise my hubby I will eat one solid meal every day, but to my shame I cheat and skip if he is at work...
Definitely look into Ensure, it's very soothing and will help keep her nutrients up. Also, at the risk of making the meds bag even bigger, hit the heLth store for supplements - loads of threads on here to get some pointers...
As for daily life... It will get better,it's just a bit of a long journey.
Sex.... Well done for mentioning it - it's important and you are newly weds for godsakes! Speaking as a woman here, crohns has made me feel less attrCtive Ttimes if you get my drift... Having my husband help clean me up or look after me can pit a dampened on things, but... We still manage to have a loving relationship. Honesty is rEally important here, just today I reminded my husbNd that I still think he's a hunk, but that I felt like crap so rumpy lumpy definitely wasnt on the cards! He remembrs to remind me that he thinks I am gorgeous too - which is awesome because I k ow for a fact I look like poo!
Keep being you - you sound like awonderful caring husband, and you guys will get through this.
Keep us posted.
Lishyloo x
Welcome CColley! We just jump at the chance to help a caring spouse! You are involved in this practically as much as she is in some ways. It can take an emotional toll on a spouse. My guy is a "fixer" and he gets really frustrated when I start getting sick because he wants to help but knows he probably can't. Just be there for her as much as you can, she will appreciate that the most. I'm sorry she has/is going through so much stress. Stress is a BIG deal with Crohn's, so having less of it is nothing but a good thing. I'm hoping her mom stays in a good place as she tries to get her disease under control. Poor girl, I feel for her! Too much all at once!
OK - lots of questions. I would wonder if they at any time put her on Prednisone (or a prednisone taper - you taper, slowly reducing the amount of that medication you take over time - usually several months - ask her she should remember that one as it tends to be different from regular meds). If she has not done a pred taper, I guess I'd wonder what the doc is doing. It tends to be the go to medication when someone is newly diagnosed and in a reasonably bad flare, which it sounds like she is. This is considered a rescue drug, not a maintenance drug - meaning you are on it for a short time to reduce your symptoms -but they tend to put you on something else less toxic for maintaining keeping the disease quiet. (as a side note - anytime she is place on Prednisone she should be sure to take ample amounts of Calcium and Vit D supplements as well as doing weight bearing exercises to help protect herself from bone loss).
I did not tolerate Asacol (sister drug to Pentasa - Pentasa opens up in the small bowel - Asacol opens up in the colon to release the drug). I didn't figure it out for several years - but it made me worse not better. Just information there.
From what I'm reading - it appears that dehydration is a big problem as well as nutrition. She *has* to drink fluids - especially being on all those medications. Please stress to her the importance of keeping herself super hydrated. According to what meds she is on - it can affect her kidneys and maybe her liver if she doesn't keep herself well hydrated. I see you say she has kidney disease - even more important - and important for her docs to be aware of this (as they should be). As far as nutrition - super important as well! If she is having inflammation - her body will need good nutrition when trying to heal these areas. Without it, she may have a harder time getting her disease quiet. As the peeps mentioned above - Ensure or Boost (make sure whatever she has is lactose free if possible - some Crohnies have trouble digesting lactose and this can cause diarrhea) are good choices because they are low residue (gives your gut a bit of a break so it doesn't have to work so hard) and they have lots of vitamins in them which she is probably missing if she isn't eating well. There are *always* caveats with Crohnies - some people can tolerate these drinks, others cannot - they may get heartburn etc. She just has to try them and see what "feels" right for her. We tend to recommend a daily food diary when you start out so you can figure out what foods are your friends and what aren't. As the disease gets quieter, she may be able to add things back in over time - but bland is good as well as low fiber, until she can get the disease better managed. She needs to keep her weight up as well. It doesn't take long to drop 20 pounds when you are sick with this disease - so fatten her up!!! :O) For a lot of us ladies this concept is difficult because we all have weight hang ups. I have learned over the years that it is much better to go into a flare with a little meat on your bones than vice versa. Still hate the weight though - double edged sword I guess.
Sorry - this is a long post!! OK - as far as pregnancies - I have had two children. One before I was diagnosed (but was already sick). I felt better while pregnant with her than I had in YEARS. With the second one I ended up having to take steroids about 2/3 of the second pregnancy because I flared sort of at the beginning. My doc did the presentation on this at our local IBD conference and she said the quieter your disease is before you get pregnant (remission is highly desired) the less likely you are to have a flare when you are pregnant. So that, my friend, is your goal. Quiet disease usually makes for quiet pregnancy. If she does flare - I'm proof they can get her through it.
And of course you can't get preggers without sex!! This is going to probably vary according to how she is feeling physically and what part of her anatomy is affected. Crohn's can affect you from your mouth to your anus (if you are shy - well say adios to that because we are going to tell you everything here LOL!), so if she has involvement in her bum area - may be a bit painful to have sex until she can get it under better control. I know that when I have inflammation in my descending colon (where most of my disease is) sex can be painful sometimes. I'd just do a bit of communicating in the process to make sure she isn't hurting - just care you know? It goes a long way so she won't get in avoidance mode.
*Please* poke around on the site with some searches. There is a LOT of useful info on here to get you started. You will figure out that what some people CAN eat, others cannot. What drugs work for some people totally don't work for others. So - it is going to be a bit of journey for her to figure things out. But we are here to help - just keep asking questions!! Good luck and welcome again!
OK - lots of questions. I would wonder if they at any time put her on Prednisone (or a prednisone taper - you taper, slowly reducing the amount of that medication you take over time - usually several months - ask her she should remember that one as it tends to be different from regular meds). If she has not done a pred taper, I guess I'd wonder what the doc is doing. It tends to be the go to medication when someone is newly diagnosed and in a reasonably bad flare, which it sounds like she is. This is considered a rescue drug, not a maintenance drug - meaning you are on it for a short time to reduce your symptoms -but they tend to put you on something else less toxic for maintaining keeping the disease quiet. (as a side note - anytime she is place on Prednisone she should be sure to take ample amounts of Calcium and Vit D supplements as well as doing weight bearing exercises to help protect herself from bone loss).
I did not tolerate Asacol (sister drug to Pentasa - Pentasa opens up in the small bowel - Asacol opens up in the colon to release the drug). I didn't figure it out for several years - but it made me worse not better. Just information there.
From what I'm reading - it appears that dehydration is a big problem as well as nutrition. She *has* to drink fluids - especially being on all those medications. Please stress to her the importance of keeping herself super hydrated. According to what meds she is on - it can affect her kidneys and maybe her liver if she doesn't keep herself well hydrated. I see you say she has kidney disease - even more important - and important for her docs to be aware of this (as they should be). As far as nutrition - super important as well! If she is having inflammation - her body will need good nutrition when trying to heal these areas. Without it, she may have a harder time getting her disease quiet. As the peeps mentioned above - Ensure or Boost (make sure whatever she has is lactose free if possible - some Crohnies have trouble digesting lactose and this can cause diarrhea) are good choices because they are low residue (gives your gut a bit of a break so it doesn't have to work so hard) and they have lots of vitamins in them which she is probably missing if she isn't eating well. There are *always* caveats with Crohnies - some people can tolerate these drinks, others cannot - they may get heartburn etc. She just has to try them and see what "feels" right for her. We tend to recommend a daily food diary when you start out so you can figure out what foods are your friends and what aren't. As the disease gets quieter, she may be able to add things back in over time - but bland is good as well as low fiber, until she can get the disease better managed. She needs to keep her weight up as well. It doesn't take long to drop 20 pounds when you are sick with this disease - so fatten her up!!! :O) For a lot of us ladies this concept is difficult because we all have weight hang ups. I have learned over the years that it is much better to go into a flare with a little meat on your bones than vice versa. Still hate the weight though - double edged sword I guess.
Sorry - this is a long post!! OK - as far as pregnancies - I have had two children. One before I was diagnosed (but was already sick). I felt better while pregnant with her than I had in YEARS. With the second one I ended up having to take steroids about 2/3 of the second pregnancy because I flared sort of at the beginning. My doc did the presentation on this at our local IBD conference and she said the quieter your disease is before you get pregnant (remission is highly desired) the less likely you are to have a flare when you are pregnant. So that, my friend, is your goal. Quiet disease usually makes for quiet pregnancy. If she does flare - I'm proof they can get her through it.
And of course you can't get preggers without sex!! This is going to probably vary according to how she is feeling physically and what part of her anatomy is affected. Crohn's can affect you from your mouth to your anus (if you are shy - well say adios to that because we are going to tell you everything here LOL!), so if she has involvement in her bum area - may be a bit painful to have sex until she can get it under better control. I know that when I have inflammation in my descending colon (where most of my disease is) sex can be painful sometimes. I'd just do a bit of communicating in the process to make sure she isn't hurting - just care you know? It goes a long way so she won't get in avoidance mode.
*Please* poke around on the site with some searches. There is a LOT of useful info on here to get you started. You will figure out that what some people CAN eat, others cannot. What drugs work for some people totally don't work for others. So - it is going to be a bit of journey for her to figure things out. But we are here to help - just keep asking questions!! Good luck and welcome again!
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Welcome to the forum. So far you have had excellant advice. Not much I can add to it. Well, maybe.
Support- Sounds like your on the right track. Your wife will need a strong support group at her side. You need to be involved in every part of her treatments. Go with her to Doctor appointments and learn to ask questions. No question is a dumb one. Write down any questions you have before going to appointments and tests. If you don't understand what the doctors are telling you let them know. You guys are new to this so for now its a learning experiance. As time goes on you will become an expert at handling CD.
Sex. Be patient. She will let you know when things are okay. Always tell her how much she means to you. There may be a time when she feels like you can't love her because of the CD. Be her rock, be a safe place for her to lean on and never brush her off.
Babies. I can't help you there cause my wife told me no more babies so I can't get pregant. Just kidding. I keep trying anyway. LOL
Yes there is life with CD. Both of you have to learn to adjust certain things in your life WHEN there is a flare-up. But inbetween them, live. Do all the things you cannot do while she is in a flare-up. My wife and I love to ride motorcycle so every chance we get we ride. Same with camping, hiking, everything. She will learn to find the bathrooms right off the bat everytime she goes into a new place.
Flare-ups. Flare-ups can happen at anytime, BUT it depends on the person. I went many years without having any major flare-ups and out of the blue it hit me about 3 mths ago. We all have CD in the back of our minds when we are in remission but you try not to dwell on it too much. CD is a daily thing for us it just depends on how you want to deal with it.
Prednizone is a great drug for slowing thing down. It does have long term side effects and that is why it has to be tapered down over time.
I work a 10 hour day 4 days a week and every chance at overtime that I can get. I do this because there are days that I just plain don't feel good ( mainly the big D) and I miss work. My employers are very good about it as long as I don't abuse it.
Last, write down any questions you want to ask on the forums. Someone is always here to help you.
Good luck and have a very long and happy marriage. My wife and I have 31 yrs invested in each other. Best years of my life.
Support- Sounds like your on the right track. Your wife will need a strong support group at her side. You need to be involved in every part of her treatments. Go with her to Doctor appointments and learn to ask questions. No question is a dumb one. Write down any questions you have before going to appointments and tests. If you don't understand what the doctors are telling you let them know. You guys are new to this so for now its a learning experiance. As time goes on you will become an expert at handling CD.
Sex. Be patient. She will let you know when things are okay. Always tell her how much she means to you. There may be a time when she feels like you can't love her because of the CD. Be her rock, be a safe place for her to lean on and never brush her off.
Babies. I can't help you there cause my wife told me no more babies so I can't get pregant. Just kidding. I keep trying anyway. LOL
Yes there is life with CD. Both of you have to learn to adjust certain things in your life WHEN there is a flare-up. But inbetween them, live. Do all the things you cannot do while she is in a flare-up. My wife and I love to ride motorcycle so every chance we get we ride. Same with camping, hiking, everything. She will learn to find the bathrooms right off the bat everytime she goes into a new place.
Flare-ups. Flare-ups can happen at anytime, BUT it depends on the person. I went many years without having any major flare-ups and out of the blue it hit me about 3 mths ago. We all have CD in the back of our minds when we are in remission but you try not to dwell on it too much. CD is a daily thing for us it just depends on how you want to deal with it.
Prednizone is a great drug for slowing thing down. It does have long term side effects and that is why it has to be tapered down over time.
I work a 10 hour day 4 days a week and every chance at overtime that I can get. I do this because there are days that I just plain don't feel good ( mainly the big D) and I miss work. My employers are very good about it as long as I don't abuse it.
Last, write down any questions you want to ask on the forums. Someone is always here to help you.
Good luck and have a very long and happy marriage. My wife and I have 31 yrs invested in each other. Best years of my life.
farm
Captain Insaneo
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Welcome. I'll answer your question as they relate to me.ccolley68 said:
After the intial dx and treatment I lived my life just like nothing had ever happened, except for the frequent bathrooms trips. My day to day life right now (not in remission) is trying at times but it's livable. I work 40 + hours per week but I'm in an office with bathroom very close by. I'm one of those who hasn't figured out what if anything bothers me yet so I eat anything I want. My fav is hot mexican food. Sex, I can do it
I am always on the lookout for a flare and on the days I feel good I'm leery that it is a fluke. My flares are years apart, but they last for a couple years each time.
mwb3779
Kitchenhawk
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I'm sorry you and your wife have to deal with this. My dx took 6 doctors to finally get someone to check for Crohn's as it is lower on the list than others. Having a "little" bag for all the meds has been a life saver for me. I use a pill box too, to help keep track of when to take them. A food/ med/ how you feel diary is a must. It helps to recognize trends with either food and the after effects or how and when to use the meds. I'm working on a little spreadsheet to enter the info on to graph and track the foods/ meds. It will make it more visual for me and my doctors. I can email my dr every week to keep him updated much sooner than my dr appts. I am also active right now. Pred has all kinds of side effects. She will know if she's taking it. It also has a terrible taste. (Its disgusting, honestly its hard to forget).
My cousin who also had Crohn's suggested to get pregnant. I've never been pregnant myself.... (hopefully it will never come to a point when I can be)... With her last 2 kids she was in the middle of a flare and getting pregnant stopped her flares completely. So that may be something to think about.
At this point, I would not be too worried about her getting addicted to sleeping pills. Most drs should start out slow with those. Mine did. Started at a half tab of Ambein CR and now I'm at a full tab. The prednisone is a weird drug because it has both good and bad side effects. I hate the insomnia but I'm glad its doing its thing. At least I hope it is. I'm better than when I first was dx' d.
Currently I'm not working because some of the bad days are really bad. I am however going to start school again. The last job I had was very stressful and is probably what caused my Crohn's to rear its ugly head in such a big way!!
Take care of her and be there for her when she needs you. Its important to have a good support group. I am so glad I just happened upon this site (through a google search for some med that was mentioned in a forum), have her get on here and join too. It is a good thing to have people you can talk too, especially ones that know what she's going through. Its great that you are on here also. There are many spouses on here too. Also great support. Good luck to you and your new bride, wishing you many happy years and a large family.
My cousin who also had Crohn's suggested to get pregnant. I've never been pregnant myself.... (hopefully it will never come to a point when I can be)... With her last 2 kids she was in the middle of a flare and getting pregnant stopped her flares completely. So that may be something to think about.
At this point, I would not be too worried about her getting addicted to sleeping pills. Most drs should start out slow with those. Mine did. Started at a half tab of Ambein CR and now I'm at a full tab. The prednisone is a weird drug because it has both good and bad side effects. I hate the insomnia but I'm glad its doing its thing. At least I hope it is. I'm better than when I first was dx' d.
Currently I'm not working because some of the bad days are really bad. I am however going to start school again. The last job I had was very stressful and is probably what caused my Crohn's to rear its ugly head in such a big way!!
Take care of her and be there for her when she needs you. Its important to have a good support group. I am so glad I just happened upon this site (through a google search for some med that was mentioned in a forum), have her get on here and join too. It is a good thing to have people you can talk too, especially ones that know what she's going through. Its great that you are on here also. There are many spouses on here too. Also great support. Good luck to you and your new bride, wishing you many happy years and a large family.
imisspopcorn
Punctuation Impaired
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ccolley68 said:
...I'll give it to you from a woman's prespective....When you are flaring and in pain with a lot of diarrhea, sex doesn't sound that appealing. There is soooo much fatigue with this disease, that can be a big libido killer. Also the thought of pressure on your stomach when you are in pain is not appealing. I was always worried I would have a accident when I was having diarrhea. And saying to my husband, " Gee can you wait one minute while I go to the bathroom" can be a real mood killer...Once she is feeling better, things will improve. Just be patient. Also I had 2 healthy children after my diagnosis. The pregnancy was great for my Crohn's symptoms.
We all learn to adapt to this disease over time, everyone is different. Please ask as many questions as you need to. Do you think your wife would want to join the forum?
Welcome to the forum, it is refreshing to see you take a proactive interest in your wife health. You will find heaps of support from it I know I have already in the short time I have been a member.
I too can totally relate to being in the just married phase, I only got married in May and by Aug was crippled by the disease. I can't even remember what happened to Sept as I don't think I made it out of bed except to see the doc. Once I was diagnosed and was put on Pred (steriods) things started to look up they are awesome! I tapered on Pred for 8 to 10 weeks and was put on 6MP to help me get into remission not that Im there yet. I can't say Im back to normal yet and not sure if I will ever be but life is starting to improve and getting back to normal including the sex!! I must say it is an important part of a relationship and one that I did stress about when extremely ill. I felt bad that I wasn't well enough to do it but my husband told me not to worry and that he totally understood and actually didn't feel like it when he could see how much pain I was in. That side of our relationship has started to improve but like imisspopcorn said this disease really drains you and your libido and sometimes after everything that we go thru the last thing we feel like is sex. So be patient and understanding communication is the most important key make sure the lines are always open between yourself and wife as it will only put more stress on the relationship if you both can't express how you feel about everything from sex to the disease itself. I must admit I was at my lowest point when I lost so much weight all you could see was my skin on bone.. attractive! But now that Im starting to feel better and have put the weight back on things are getting better in all departments. Just be there for your wife and tell her how much you love her no matter what happens. I know I could not have gotten thru the last 4 months without my loving wonderful hubby.
Life will get better but it will take time, there will be trial and error with drugs, working out what foods she can tolerate and yes you can live a normal life once your heading in the right direction. Im only at the begining of this new experience but hell Im not giving up without a fight or letting this disease rule my life and how I live. I still struggle to go out to dinner as I find the food too rich and end up on the toilet straight after eating, Im lucky at home as my husband cooks and makes sure Im eating a well balanced diet that I can tolerate. I also work fulltime 8 hours a day 5 days a week... Yah!! I did have time off when I was extremely ill tho.
Please stay positive and keep pushing for answers and the right drugs to help your wife get on top of this disease. I also found when my family was positive and rallied around me it helped me stay positive/focused on getting better and not letting depression creep in.
Good luck and keep us up to date with how she is doing and remember we are here to answer any questions or to just lend an ear!
I too can totally relate to being in the just married phase, I only got married in May and by Aug was crippled by the disease. I can't even remember what happened to Sept as I don't think I made it out of bed except to see the doc. Once I was diagnosed and was put on Pred (steriods) things started to look up they are awesome! I tapered on Pred for 8 to 10 weeks and was put on 6MP to help me get into remission not that Im there yet. I can't say Im back to normal yet and not sure if I will ever be but life is starting to improve and getting back to normal including the sex!!
I must say it is an important part of a relationship and one that I did stress about when extremely ill. I felt bad that I wasn't well enough to do it but my husband told me not to worry and that he totally understood and actually didn't feel like it when he could see how much pain I was in. That side of our relationship has started to improve but like imisspopcorn said this disease really drains you and your libido and sometimes after everything that we go thru the last thing we feel like is sex. So be patient and understanding communication is the most important key make sure the lines are always open between yourself and wife as it will only put more stress on the relationship if you both can't express how you feel about everything from sex to the disease itself. I must admit I was at my lowest point when I lost so much weight all you could see was my skin on bone.. attractive! But now that Im starting to feel better and have put the weight back on things are getting better in all departments. Just be there for your wife and tell her how much you love her no matter what happens. I know I could not have gotten thru the last 4 months without my loving wonderful hubby.Life will get better but it will take time, there will be trial and error with drugs, working out what foods she can tolerate and yes you can live a normal life once your heading in the right direction. Im only at the begining of this new experience but hell Im not giving up without a fight or letting this disease rule my life and how I live. I still struggle to go out to dinner as I find the food too rich and end up on the toilet straight after eating, Im lucky at home as my husband cooks and makes sure Im eating a well balanced diet that I can tolerate. I also work fulltime 8 hours a day 5 days a week... Yah!! I did have time off when I was extremely ill tho.
Please stay positive and keep pushing for answers and the right drugs to help your wife get on top of this disease. I also found when my family was positive and rallied around me it helped me stay positive/focused on getting better and not letting depression creep in.
Good luck and keep us up to date with how she is doing and remember we are here to answer any questions or to just lend an ear!
- Joined
- Jan 7, 2009
- Messages
- 896
Hi ccolley,
First of all, Kudos to you for seeking out information to help you understand what your wife is going through. It's very important for her to have your support. I think you will find this forum extremely helpful and informative. There are lots of great people with tons of great information.
Since the others did such a great job of overloading you with info (sorry, I only took the time to scan the posts so I hope I don't repeat too much what has already been said), I just wanted to add my two cents about the sex question. I am a female who has had constant battles with rectovaginal fistulas. These are basically abnormal connections made by diseased tissue between the rectum and the vagina. As you can imagine, that has posed serious issues regarding sex, from both a physical and emotional standpoint. My husband and I are still able to have, all things considered, a pretty decent sex life. But I can not express enough how important it is that he is understanding and supportive.
There are things about this disease that can be downright humiliating (for women AND men as well). It is important for her to know that you love her and support her no matter what. There may be times when she will hide from sex, whether it be because she is going through something embarrassing, she is in pain, she is completely fatigued...a whole slew of reasons. It is vital that you recognize that this has nothing to do with her not being attracted to you. In fact, these are the times when she needs you the most.
My advice to you: Keep an open line of communication and encourage her to "tell you everything". Be understanding. Finally, (and I saved the best for last), be creative with your sex life...sometimes intercourse may be out of the question, but that doesn't mean you can't still have fun!
I hope you find all of the answers you are looking for. Remember that most people with Crohn's are able to lead a very fulfilling life. I wish you both the best of luck!
First of all, Kudos to you for seeking out information to help you understand what your wife is going through. It's very important for her to have your support. I think you will find this forum extremely helpful and informative. There are lots of great people with tons of great information.
Since the others did such a great job of overloading you with info (sorry, I only took the time to scan the posts so I hope I don't repeat too much what has already been said), I just wanted to add my two cents about the sex question. I am a female who has had constant battles with rectovaginal fistulas. These are basically abnormal connections made by diseased tissue between the rectum and the vagina. As you can imagine, that has posed serious issues regarding sex, from both a physical and emotional standpoint. My husband and I are still able to have, all things considered, a pretty decent sex life. But I can not express enough how important it is that he is understanding and supportive.
There are things about this disease that can be downright humiliating (for women AND men as well). It is important for her to know that you love her and support her no matter what. There may be times when she will hide from sex, whether it be because she is going through something embarrassing, she is in pain, she is completely fatigued...a whole slew of reasons. It is vital that you recognize that this has nothing to do with her not being attracted to you. In fact, these are the times when she needs you the most.
My advice to you: Keep an open line of communication and encourage her to "tell you everything". Be understanding. Finally, (and I saved the best for last), be creative with your sex life...sometimes intercourse may be out of the question, but that doesn't mean you can't still have fun!
I hope you find all of the answers you are looking for. Remember that most people with Crohn's are able to lead a very fulfilling life. I wish you both the best of luck!
- Joined
- Aug 9, 2009
- Messages
- 3,680
Welcome! Everyone else has said so much and I can't really add anything, but wanted to welcome you and say well done on being so supportive of your new bride! She is lucky to have someone like you by her side. I am on my own and find it all quite lonely at times and would be greatful to have someone like you!
I hope you can get things quieted down soon so you and she can enjoy being newlyweds!
She is lucky to have someone like you by her side. I am on my own and find it all quite lonely at times and would be greatful to have someone like you!I hope you can get things quieted down soon so you and she can enjoy being newlyweds!
Hey guys, thanks for all your responses and advice. Sorry its taken me a few days to get back, just been busy working and everything. First, she went back to see her new Crohn's specialist here in Houston yesterday, and I think it went well. She told her to stop taking all the meds she has been given since so far nothing seems to help, and also to assist her in seeing her when she is sick and being able to get a better analysis. She has instructed her that whenever she has a flare up, to call her (or her office), anytime of night and let them know what is going on, then to come into be treated by them so they can monitor. She actually stopped taking the meds on her own on Monday, basically for the same reasons the doctor said, because it wasn't doing anything. This was the best news I had heard, because I too was concerned that the medications were just making her worse emotionally and not helping her disease. Honestly, since she stopped taking the meds, these have been the best three days she has had in months. She has been sleeping, getting out during the day, happy and smiling the way I have been missing. She is still very cautious with food, and last night laying in bed watching TV, I could hear her stomach moving, but she was strong and it was all in all a good night. I really hope this doctor can help her out. She seems to be the first doctor we have seen so far that truly has a grip on what she is dealing with and the pain she is experiencing, so I am very hopeful. And I couldn't be more pleased with how she has been since she has given the meds a rest. I was so worried about her with all the pills and Ambiens and sleeplessness and concerns about addictions.
One other request I have. I would like to make her a little cookbook/menu that I will put together of stuff she can eat that she can pick from and I will prepare for her. What are some of the things that you guys eat or have eaten in the past that helps soothe your stomach, or just doesnt upset it? I got her some Ensure, and I just want her to eat and get some nutrients. It would make her days so much better if she wasn't so fatigued all the time.
Thanks again for all your kind words. I will keep up with yall as often as I can, but with the holidays looming, it may be scattered.
One other request I have. I would like to make her a little cookbook/menu that I will put together of stuff she can eat that she can pick from and I will prepare for her. What are some of the things that you guys eat or have eaten in the past that helps soothe your stomach, or just doesnt upset it? I got her some Ensure, and I just want her to eat and get some nutrients. It would make her days so much better if she wasn't so fatigued all the time.
Thanks again for all your kind words. I will keep up with yall as often as I can, but with the holidays looming, it may be scattered.
- Joined
- Nov 7, 2006
- Messages
- 2,161
Hi and welcome to the Forum!
I have read though this thread and I am so pleased that your wife is getting the help she so desperately needs to get back on track.
Best thing the doc could have asked her to do was to stop all meds and start from scratch.
Crohn's disease and the meds associated with helping it are mostly found by trial and error, although most gastro doctors will start with Prednisone to hit it hard and hopefully bring it into remission quickly. But then again it is up to each doctor and patient.
As far as foods she can eat...you could ask her doctor to refer you to a dietician.
Basically foods that go well with me when I am flaring are bananas, rice, apple juice, soups, ensure...the only cereal I can eat is Special K. All your bland foods.
When I am feeling good most foods I can eat except for too much fiber.
Never ever nuts and popcorn...and carbonated beverages are a no no.
I hope your wife continues to improve and the doctor clicks on the right meds soon.
Again, welcome to the forum.
Nancy~
I have read though this thread and I am so pleased that your wife is getting the help she so desperately needs to get back on track.
Best thing the doc could have asked her to do was to stop all meds and start from scratch.
Crohn's disease and the meds associated with helping it are mostly found by trial and error, although most gastro doctors will start with Prednisone to hit it hard and hopefully bring it into remission quickly. But then again it is up to each doctor and patient.
As far as foods she can eat...you could ask her doctor to refer you to a dietician.
Basically foods that go well with me when I am flaring are bananas, rice, apple juice, soups, ensure...the only cereal I can eat is Special K. All your bland foods.
When I am feeling good most foods I can eat except for too much fiber.
Never ever nuts and popcorn...and carbonated beverages are a no no.
I hope your wife continues to improve and the doctor clicks on the right meds soon.
Again, welcome to the forum.
Nancy~
- Joined
- Oct 9, 2009
- Messages
- 1,600
PIZZA!!!! Opps, wrong question. When I am really bad and want to rest my gut, my wife makes me drink hot jello. The warmth does help sooth things, I also eat a lot of scrambled eggs, no veggies or meat or dairy. I stay away from bread or bagels. Just seems to ball up in my gut and block the old intestines. I have days where I can eat potatoe soup and other days it kills me. Fish. Baked not fried. Chicken meals where the chicken is cut up into small pieces or shreaded.
I forgot to mention no caffeine and no smoking - this is what my GI doc told me day one. I had already figured out the caffeine thing years ago - but not the smoking. I'm pretty convinced the smoking is what bought me my first surgery as it was my worst flare ever when I started smoking.
- Joined
- Sep 5, 2009
- Messages
- 160
I agree with Pirate the hot jello is about the best when you are flaring it can be soothing to sip on. Also on potato soup but it can be too hard on really bad days also chicken broth is good. I also find that milk shakes do well for me they are also loaded with calories just not very nutritious ones. I stay away from all red meats no veggies unless they are well processed ie. canned. fruits that i can tolerate are peaches bananas, pears,any type of melons and strawberries. No apples for me they will surely send me running to the emergency room. An appointment with a nutritionist is a good place to start she will also have to keep a food diary. The ensure is great but expensive i can get two dollar off coupons from my local hospital. if your dr writes a prescription sometimes your insurance will cover it.or if you have a medical flex spending account at work it will cover it but again you may have to prove it is medically neccesary. Best of luck to you and your new bride remember to be there for her always and you need a support person other than her that you can talk to when you get overwhelmed.
Again everyone is different with what foods they can tolerate depending on where the affected area is and how severe it is. I actually am not too bad in general with food and seem to be able to tolerate most as long as its pretty bland diet. I stay away from fatty, greasy, deep fried food, anything spicy, wheat, most diary products, I drink soy milk with my supplement shakes. I eat most meats, vegies, fruit etc without much hassle so I suppose Im pretty lucky in that respect, the only time I have issue with food is when I had really bad nausea and vomiting then I couldn't tolerate anything. I only get the big D if I eat bad otherwise I generally have the big C instead! Ha..ha.. can't win either way. Pain in my abdo is only bad also if I don't eat bland. Its trial and error working out what foods she will be able to eat to suit her and how she reacts to each one, hence why the food diary is pretty important. The shakes are the best way to start to put weight back on and get the right stuff into you. Good luck you are doing an awesome job looking after her and are so sweet to be trying to work out recipes so you can cook for her.
imisspopcorn
Punctuation Impaired
- Joined
- Aug 3, 2009
- Messages
- 5,958
Applesauce with cinnamon and gingerale do the trick for me.
