Newly Diagnosed Crohn's

Hi,

I had a bad summer when I was about 13. I was in constant pain all summer vacation. I didn't tell my dad because my mom was dying and I didn't want to give him anything more to worry about. Then it stopped.

I'm now 56 and was diagnosed with UC three years ago. Have been on mesalamine ever since. It doesn't do much for me. More recently the pain is getting worse and the doc is now using the word Crohn's. He doesn't like the steroids so he put me on azathioprine last October. This med caused an inflamed pancreas and a hospital stay. The pain with that was excruciating. He decided he wanted to try Humira next but also wanted to wait to give me time to heal from the previous problem first.

On New Year's day I got appendicitis. I was operated on same day. Afterwards the surgeon told me it was very bad and asked me why I waited so long to come to the hospital. My answer was that I'm in pain all the time so I didn't know something new was happening. Two weeks later I was admitted again with bad pain on the right side. It turns out I had developed a hematoma. Both my gastro doc and the surgeon had a conference and decided to wait until March to put me on the Humira to make sure I had no further complications from the appendectomy.

To make a long story short, the pain is getting so bad I have used most of my saved up vacation time because I can't sit up straight for any length of time. I just want to lay down and moan. I have no energy and am experiencing difficulty concentrating when I am at work. My whole body hurts and my hands are cold all the time. I've begun to have nausia and am eating less. Because of this I've lost 30 pounds in the last six months.

I'm hoping the Humira will help.

Hello and welcome to the forum.

I am sorry to hear you are having such a tough time of things at the moment Whilst steroids are not great I think it has been remiss of your doc not to have been giving you something to get the inflammation under control for you - at the end of the day they are not the one having to live with the pain and any maintainence med you are then given has an uphill battle to try and settle the tum. When you are able to eat what are you having? Where exactly is the pain and is it like a constant ache or a sharp stabbing pain? Do you know whether any of your vitamin levels have been tested recently? With regards to the Humira I have not been on this myself but do check out our sub forum for this to get some info about it: http://www.crohnsforum.com/forumdisplay.php?f=59.

Wishing you all the best and please keep us updated on how you get on.

AB
xx

Hello,

I don't have a bio done yet but I'm a retired RN with Crohn's that is quiet and has been for about 5 years. As my GI guy said, "They do flame out." I'm 70.
Your doc "doesn't like steroids?" What? And yes, pancreatic pain is bad. I take it that you have had the tests necessary for a formal Crohn's diagnosis and your surgeon found it upon operating on you.
You have a boat load of anxiety which is normal, but it would be "nice" to have that treated so you can relax and don't know what you are taking for pain. Of course I wonder what type of work you do.
Going to wait to see if I can FIND a response here if you can put one on also. I functioned as a PA for many years to an oncologist so I'm not an average nurse straight out of school.
You're making me nervous, Mike, so I hope you have a wife there that you can drive nuts of maybe help you get your ducks in a row because you don't have your information correct. Perhaps it was difficult to put down and you DO, but a 30 pound weight loss is not the best. And I hope that you do not drink.
I wonder if you are otherwise in good health too and don't smoke. You can easily be tuned up, do not worry over that. First things first. I will think of you and look forward to hearing from you. I think I could help you or someone else on here certainly could. And yes, doctors drive me insane, but ask any nurse. Hang on, you're young. RNConnie

And do listen to Angry Bird!

Hello,

I read your history above. I am a gastroenterologist in NYC who specializes in the treatment of Crohn's Disease. The first question is, what type of IBD do you have? If it is UC, Humira is not a great option. It was approved by the FDA for UC, but the results were not overwhelming. I agree with Angrybird that steroids would be reasonable if you have UC. Steroids should be avoided if it is Crohn's as it promotes perforation and fistulization. I always tell my Crohn's patients that 9 out of ten times, you will get a Crohn's patient better with steroids at the cost of a ton of side-effects; however, nine out of 10 patients with complications were on steroids. Antibiotics would be a good option if this is Crohn's. I would have a good GI pathologist who is experienced with IBD review the path from all of your previous colon biopsies and appendectomy as this could help sort out your diagnosis and get you on the road to recovery.

Adam Steinlauf, M.D.

Adams11 said:

Antibiotics would be a good option if this is Crohn's.

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Could you elaborate on this Dr11? Why antibiotics? A short course or long term use? For me personally I've never taken antibiotics for Crohn's disease.

Steroids should be avoided if it is Crohn's

Why? Dr11
Cos of perforation and fistulas?
Prednisolone saved my life nearly 3 years ago, otherwise I wouldn't be here.
Tons of people on this forum have used steroids to help with inflammation, so I just don't get it!
Why would our gastros prescribe it if it causes perforation and fistulas? Totally in a tail spin now!

Hi All, and thanks for all the fast responses.

Ok, to answer some of the questions posted above.

I can eat most foods...just don't feel like eating much. I now force myself to eat because I need to. Foods high in fiber like breakfast cereals cause pain so things like that are out.

The majority of the pain is from the the lower abdomen up to the lower rib cage, on a good day it's about a 3-4. On a bad one it's 6-7. Intermittent cramping has started the in last couple of months. They go up to an 9 and usually last from a few seconds to a minute or more and are always in different places in my gut. Lately the knuckles in my fingers and my knees are beginning to give me difficulty.

I have no idea of my vitamin levels but I take a multivitamin daily and have been for 25 years.

I have a colonoscopy every two years at the doctors recommendation. During the last one (about 7 months ago) they took many biopsy's and the doc says the entire colon is being attacked at the cellular level. I think that's why he's started using the Crohn's description.

The doctor is a gastroenterologist and is with a major hospital in the US midwest. I don't take any prescription pain medication. I take tylenol before bed every day but it is mostly ineffectual. I don't take it more often because of the warnings about liver damage. So i just kind of grit my teeth and drive on.

I no longer drink (two years) or smoke (one year).

Other meds I am taking are;
Vytorin for cholesterol
Nexium for acid reflux
Mesalamine (Asacol) for intestinal inflamation.

I am married and my wife takes very good care of me, but of course she's getting worried also.

I think you need to get onto your doc about getting some treatment for you tum, I am not sure how steroids will be with the recovery from your op but it may be that they are better than what you are currently experiencing which cannot be helping. They can also then arrange foe your vitamin levels to be checked.

Hi Mike:

You need to ask your GI to test your Vitamin D level tested ASAP. If you do have Crohns, I am certain you will find that your Vitamin D level is dangerously low and if that is the case, you need to start taking Vitamin D3 and Folic acid supplements. Please refer to the string below for a recent discussion surrounding the importance of Vitamin D:

http://www.crohnsforum.com/showthread.php?t=23826

Once you have the results of your Vitamin D test, please post it here.

All the best to you.

Lisa

Hi Mike.....the old nurse here. Boy, you have to get more information from your doctor. One thing I notice is that you have gritted your teeth for a while and male doctors will respond to that and not understand the degree to which you are in pain, even tho you think you tell them.
Good for you, smokes and alcohol gone. Hard, yard trip with the smokes and the resultant anxiety is powerful and can also lead to gut issues.
Get to know the doctor's nurse. Insist on getting your op reports, they're yours, you just sign for them, then you can sit at your computer and look stuff up so you are familiar with your disease because it sounds to me like the lining of some of your colon is inflammed. Crohn's involves all 3 layers of the colon. Having pain promotes pain, so of courser the tylenol is worthless. You're in the bigger leages now and something to consider is if you get into too much difficulty this weekend, go to the ER, they have access to your records and can give you some pain meds.
Illness is a family afair so your wife is going to have to learn also since at times you'll be "unavailable" shall we say. You can be made SO much better that it's astounding to me that you are in the shape your're in!
I'm sure you're depressed too. Don't let this go on much longer before you address EXACTLY what is wrong with you and WHERE it is wrong and WHY you can't take pain medications or an anti-anxiety med. People with pain do not get addicted like people who have a sore knee, if that's what you're afraid of.
Kiss Fiber good-bye. Say Hi to ice cream. And mashed potatoes. And creamed stuff, anything that "bends." To me you sound high strung, but your situation would make that the case certainly. And, you are a man. Can't help myself.
I hope that you are near a hospital with which your doctor is affiliated. I live in Michigan, you said something about the mid-west. I'm in the boonies, but we have really good "gut guys" here and believe me, a nurse isn't their idea of a good time, but my Irishman can deal with me just fine. I carry photos of my FILMS in my purse in case I get in a car wreck. Had 2 ft of colon removed a while ago and I'm as good as it gets now at 70.
So hope that I hear how you are doing. Tell your wife that it is in her best interest to know exactly what is wrong with you and to knock you out with pain meds. Told you I can't help myself, but a little humor helps and you are too young to be in this awful place. OK? OK. Let us know. RNConnie

Hi RNC,

Thanks for the info. I plan on making an appointment with my Gastroenterologist on Monday morning. It usually takes about two weeks to get in to see him. He does scopys every morning and reserves the afternoons for appointments. In two weeks it's March, and he said to see him then. I will let him know, in no uncertain terms, the extent of my problems. He will also hear that I will be required to take a business trip the second half of March and will not be available, so he needs to take care of this when I see him.

On the flip side I can and probably make an appointment to see my family practice doc. It's a lot easier to see him, usually within two days. I may even ask him for something stronger than tylenol to hold me over until I see the gastro.:wink:

Please keep us updated on how you get on hun.

Mike2871 said:

Hi RNC,

Thanks for the info. I plan on making an appointment with my Gastroenterologist on Monday morning. It usually takes about two weeks to get in to see him. He does scopys every morning and reserves the afternoons for appointments. In two weeks it's March, and he said to see him then. I will let him know, in no uncertain terms, the extent of my problems. He will also hear that I will be required to take a business trip the second half of March and will not be available, so he needs to take care of this when I see him.

On the flip side I can and probably make an appointment to see my family practice doc. It's a lot easier to see him, usually within two days. I may even ask him for something stronger than tylenol to hold me over until I see the gastro.:wink:

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Hi Mike:

Sounds like a plan! In the meantime, you may want to consider taking some Vitamin D3 and Folic acid as it takes some time for the vitamins to get to a level where they can start relieving some of your worst symptoms.

Just a thought.

Lisa

Hi Lisa,

I've been doing some research on Vit D, B12, and Folic Acid since reading your comment. It sounds like good advice. I'll go to the store tomorrow if I'm feeling up to it.

Thanks,

Mike:wink:

Mike! This site just said that I had a "private message" from Uptight and Gritting teeth and I can't open it because of some unknown blockers. I was so hoping you told me where to stick it.
You have a plan and by god you walk in with a gentlemanly attitude and the squeaky wheel, you know. You deserve some pain meds, so hook up with your family doc. Tell him you're dying. Or something.
And you have to go "on the road." Well, then you have to get some help. Once you get into a rhythm here, you will automatically get a copy of your labs when you go into the office. Sign for them this week, that's a heads up for them too. Oh, this guy isn't going to be happy with milk toast. By getting your labs and copys of your scans and whatever, you will watch yourself improve. You can track it and know where you need some help. You're a business man, it's just business! And when you are your sickest, you have to be your strongest, but once you make that leap into Help me or I'll slap you mode, the road will smooth out. Every doctor you see will have some kind of report for you and your family doc should have copies of ALL of your history.
I have concern for you, only in that I want you to be properly cared for and have good nutrition so your head can function better. Meanwhile I'll try and find out how to get the hidden message, I'll unlock doors and hit levers.
It's hard to not want to smoke too when you are so anxious. Stopping was the hardest thing for me, but I started nursing when ashtrays were in the bedside stands. And doctor's smoked in the board room. Hang on! RNConnie

Hi RNC,

I would never tell you where to stick it. There are VERY few people I would do that to. Nope, just some info I didn't want to post in public.

Mike.

Hi All,

Just got back from the hospital.

This morning made an appointment with my GI. Like I suspected, they couldn't get me in until 6 March. Then tried to make an appointment with family practice and they also couldn't see me until 6 March. So I went to the emergency room. They put me on morphine and took about a gallon of blood and did another CAT scan. CAT results showed nothing so it's not a complication from the appendectomy. They did send me home with 20 count of percoset.

They talked to the GI and he agreed to move my appointment up to this Friday. He said he didn't want to start the Humira this close to emergency room visit. I'm keeping my fingers crossed to start Friday.

Sorry to hear you had to go to the ER but will be fingers crossed that this Friday can bring about the progress you need.

Mike
I too was DX later in life as you were. About a year after I retired I went to have my apendix removed and they found the crohns.(at age 62) Like you I had problums for a long time but just lived with it. Long story short, after 3 operations, a ostomy bag and reversal I'm still having a flair. I know what you mean when you say that its hard to do anything. All I want to do is lay around all the time also but we cannot do that if we can help it. The other day I went food shopping with my wife and the next day my legs hurt because I and so out of shape. Today I worked in the garden for over a hour not because I felt good but because I need to. I find that if I keep my head up things get better. I sure hope everything gets better for you soon.
You should try coming to the chatroom, there are alot of people there that help me go through this. Hope to see ya there.

Hi Angrybird and Jim (POPS) and everybody else here,

Thanks for the encouraging words. I've felt very alone on this subject for a long time and it helps to hear from others who are also experiencing IBD. I'm glad I "bumped" into this blog and gave it a try.

I know what you mean, Mike. When we are so frustrated and unsure about what we should do next, sharing with others in this forum who have been there or are helping a family member who is struggling is very comforting. IBD can make you feel so alone, but not anymore.

Please continue posting updates. You WILL get better.

Lisa

Has anybody experienced inescapable itching? It started last week. It's everywhere but worst on my belly.

It may be due to stronger pain killers try an antihistamine to see if that helps. I have just had op and on strong painkillers and got the almost all over. Hope this helps.

Hi All,

Ok, so I saw my GI today. He says he's ordering the Humira and it should arrive in about 2 - 3 days. I don't know why he didn't order it when I was in the ER the other day (they called him so he knew I was there.) Also I told him I needed more Percoset as I only have 5 left. He changed the subject and quickly left the room. After waiting for about 15 minutes a nurse came in and started talking about Humira. I asked her about the percoset and she told me the doctor doesn't do that. After pressing her about my pain and that I shouldn't have to endure this she said she would go talk to him. Long story short I got a one time prescription for Tramadol(?).

On the Humira, the nurse also said something about it needing to be approved then, almost as an afterthought, added that "it always is."

They sound really on the ball don't they!?!? I will be keeping fingers crossed that you will be getting the Humira very soon.

The nurse also said that it would be received by the "High Cost" pharmacy, transferred to the normal pharmacy and they would call me to say it's available for pick-up.

How expensive is Humira? I don't believe it will cost me anything because it's military but I've never heard of a High Cost pharmacy.

Not sure to be honest, things work differently over here.

I've decided to save what's left of the Percoset for emergency use.

The Tramadol is Ok. Different than the Percoset. With that the pain is actually reduced. With the Tramadol it’s……kinda pushed to the side instead of reduced, so it’s not the focus of your attention anymore. Also makes me a little loopy but that helped me sleep ALL night. First time that’s happened in recent memory. Don’t know how the loopiness is going to play out with work though. Maybe it will reduce itself in time.

Humira should be here by Wednesday. :thumright:

Glad you are getting the Humira soon, the Tramadol is helping a bit,it may also give you some funky dreams. Please keep us updated on how you are getting on.

I ran a test yesterday and didn't take any Tramadol because I wanted to see how long I could go without it. I made it until the afternoon. The pain came right back and after taking one every 4 hours I'm now almost back to where I was before the test. I won't be doing that again.

We are expecting 6-8 inches of snow starting this afternoon through tomorrow. I hope they don't close down the streets because it will prevent me from getting the Humira when it arrives. The doctor said I should see improvement a day or two after taking the initial dose but I read on this site that it can take up to several weeks. If it takes longer than the doc estimates I will need a new prescription for the pain meds and he's not a big fan of pain medications.

I will keep fingers crossed that the roads stay clear for you, I don't have any experience with the Humira but I do hope it will kick in sooner rather than later for you.

Major snowstorm overnight. Everything's closed so I don't think I'll be getting the Humira today.

That's just typical, will be keeping fingers crossed that tomorrow can be the day for you.

The Humira has arrived. I have an appointment with the GI nurse to inject the first loading dose tomorrow morning. :dance:

Yay!! Hopefully this will be a turning point for you, let me know on how you get on.

My symptoms are quite similar to yours but here in NZ with free health, they cost save like crazy so I stayed home instead of in a hospital ward as I wasnt actually dying! When I came out of anesthetic I believe I told several nurses to bugger off cos I was tired and wasnt going home!! Hahaha I dont remember, Im sure it cant be true. One thing Ive noticed is that hardly anyone except us guys that have CD have any idea of the intensity of the pain - I swear at first I thought I was having a baby! (At 56 LOL) It takes a bit of dialogue to get that through sometimes - dump the stiff upper lip and cry a bit! As for the steroids - I agree with your Doc, I dont like them either BUT THEY PULLED ME OUT OF THE WORST PAIN IMAGINABLE so advice from your personal RN, DR11 and ANGRYBIRD is very sound. We're all right with you Mike, it gets better but its a bit of a journey for some peeps, ups and downs but there is an end to the road - race you there!!! Keep the communication going with your wife, make sure she understands you love her but sometimes its just all too much to want to share it and solitude for a while is healing for the mind. HUGS to you both JenX

Well, got my first loading dose (4 shots) of Humira this morning. I must be lucky. They didn't feel any different than a flu shot. All 4 were in the stomach. The nurse gave me the first 2 and I did the second 2. They had me sit there for an hour to make sure I had no allergic reaction then I was on my way.

I didn't see the doc today (he wasn't in) but he had told me earlier that I should begin to see results in a few days. I'm keeping my fingers crossed!

Will be keeping fingers crossed too!

Hi, your situation reminds me of mine. I had my appendix removed at age 8 , my gallbladder removed at age 17 , pancretitis at age 18 and I finally got the IBD. Dx last year (age 29). They also thought UC. I had tries asacol, and Canasa. None of it helped. Recently I started had SEVERE stomach pain. After 3 trips to er I had exploratory surgery. The found 2 sections of my bowels connected to othe parts it was not suppose to be. They also found a massive ulcer (what they think) on the outside f my transverse colon. Now they saying crohns for me too. After a week on antibotics I realized I felt SO. Much better on them! As soon as I stopped my stomach cramping and body pains came right back. So temp I'm back on antibotics and Tramadol. I'm possibly having surgery again to biopsy what they think us that ulcer to know for sure then starting a "potent" crohns medication ASAP.

Well, it's now the next day after my first loading dose of Humira. I haven't had the need for pain medication yet. Stools are still soft but no longer watery. I feel like I haven't in a year. Sure hope this continues. :emot-dance:

So glad you are getting quick relief. You've waited long enough! :highfive:

That's very encouraging news! I hope today has been another good one for you.

Today is day two. Only one incident. My wife and I went out for breakfast. I had a ham & cheese omelet. About forty five minutes later we were shopping in one of those large department stores and I had a series of cramps that doubled me over. People were staring. It felt like gas cramps X100 and lasted about an hour. At the end I had to literally run for the rest room and sit there a while. I've been feeling great ever since.

Great, Mike! Don't push it. You are pushing it. Don't. Good. I love it when people stare. Small amounts of food, creamed things. Amen.

Glad things are mostly doing well, just remember baby steps when it comes to food no matter how tempting it is (I have made the same mistake myself after my op and the result wasn't pretty).

Today is day three. I’m almost back to where I started. My gut feels like it’s burning.

When I was a kid I didn’t understand the adult definition of heartburn – that it was acid rising up. I thought it was burning in the stomach itself and I’ve had that most of my life. Now the burning includes the entire gut. I’m back to being miserable. If this trend continues in a few days I’ll be back to where I was before the shots.

Sorry to hear that today has not been so good when are you next due to have another shot of the Humira?

Oh no. I hope that is just a temporary side affect. Be sure to tell your GI knows about it.

Hi Angrybird,

Second loading dose is Friday next week.

How are things going today?

Hi Angrybird,

Last Friday I asked the nurse who trained me on the auto pens if I could get some more of the Tramadol and since the doc had the day off she left a note on his desk. Got a call from the pharmacy yesterday at aprox. 4PM that it was ready for pick up so I'll be getting that this morning. I'm hoping he gave me enough to last at least until the next round of shots. It's a bit hard to juggle pain and work.

I am here to send out a BIG WELCOME !! I have made lots of friends since being here and lots of HELP too ... as my hubby is the one with the Crohn's and so it helps to know what I am to look for ... so if your needing a friend I am there for you !!!

Well, I've had 5 days pain free. Things are looking up.

Who is Dr11, I have never heard that steroids should be avoided if you have Crohns, has anyone else?

Mike2871 said:

Well, I've had 5 days pain free. Things are looking up.

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That's wonderful to hear I really hope this can continue for you.

I always have either Budesonide or prednisolone for my flare ups.

Hi,

Tomorrow is my first maintenance dose of Humira. It's been 6 weeks since I started.
Overall I'm doing very well. I don't need pain meds anymore and movements are starting to normal up. My energy levels have greatly increased and I feel 20 years younger!!!

Yay :dance: I am pleased that things are going well for you, long may it continue!

I know it has been a long road for you so it is so good to hear you are doing so well, Mike! It's just wonderful!

Hi All,

It's been approximately 6 months since I started on the Humira. The prescription was for 6 minths so they have renewed it for another 6. It worked well for me during most of that time. The shots are one every other week on Friday.

About two months ago I started to feel a little off on the day before a scheduled shot which progressed over time to several. Now I start to feel bad 5 days before a shot and the real pain begins 2 days before. After a shot (I do them in the morning before work) I begin to feel almost normal by lunch time. So the first week after a shot is good the second not so good.

I have an appointment with the Gastro Doc on 16 September...I'm really hoping I can wait that long!

Hi Mike:

Sorry to hear the Humira seems to be losing it's effectiveness. The ups & downs of this disease can be discouraging at times, but the good news is that there are always other options for different treatments that you can pursue either with meds or natural alternatives. Good luck!

Lisa

Hi All,

Just a note to let you know that I've now been on Humira once a week for several years. I'm doing much better now. I haven't had any complaints for almost a year and a half. Had a colonoscopy about 6 weeks ago and they did find and remove a few Tubular Adenoma (?) but other than that I'm good!