Life is seeming very hard

[Ckt]

I just wanted to reach out and ask for some support. I have been feeling lately that there is little hope in my life..feeling better,having a sense of purpose or joy. I we t to Chicago last month to get into the stem cell transplant program which I am still being evaluated for. I am not ill enough at this moment for the transplant which is a good thing so they started me on methotrexate added to my humira. I had barely started cimzia but the docs there thought the combo therapy would tip me over into remission.
I have experienced some awful side effects from the methotrexate which my gi doctor here kind of blows off as 'a few days of flu like symptoms'..ok..2-3 days of fevers,intense muscle pain, mouth and throat ulcerations with skin sloughing off my lips.
I'm just tired you know?and I feel like a big whiner..I know there are so many who are sicker than I am. My gi doctor here in ky actually said of all her crohns patients I am the only one who goes regularly to the er..when asked what the others do, she basically said they suck it up because of children and jobs. Which made me feel like a piece of useless crap as I couldn't have children and I haven't worked in ten years. I WANT to work. I want my life to have meaning and have a sense of contentment. And I don't.
So thanks for listening..I'm just weary you know?

 

[KayleighMeek]

Sorry you have been feeling so bad. From what you say that wasn't very nice of the dr to say that not everyone is the same with this disease and that is a person you would think would understand. Also if you feel like you need to go to the Er I think you should still go if you are suffering then they need to know about it and help you.
Have the dr's spokent to you about increasing your folic acid supplement this helped me a lot when I first started methotrexate and got rid a lot of the side effects. If they haven't I would deffinatley ask about it and see if it makes any difference.
Hope that something helps you soon x

 

[Tenacity]

Sorry to hear you have been feeling so low. I really think you need to seriously consider finding yourself another doctor. Yours sounds really awful! Most of the physicians I have met have a lot of respect and consideration for anyone who has IBD and normally would go the extra mile for us. You should absolutely not be made to feel that you are not handling the cards you have been dealt as good as you should be - who are they to know! Unless someone has walked in your shoes, they have no idea. Many times, it is not until a doctor has been a patient him or herself, that they realize how hard it is to be on the receiving end of bad medical care. Try to surround yourself with more supportitive people, and don't worry about the fact that you have not worked. Rather count yourself blessed that you have not HAD to work. Most of us do not consider our work to be the most important thing in life. Your life is not meaningless! Never feel that way, it simply is not true. You have many challenges to overcome, and it sounds to me that you are doing nothing but your best to handle the situation - even going as far as investigating the option of a stem cell transplant. There are different severities of IBD, and where some might be able to handle a career/work, and have remissions that last many years, others have a much more severe form of IBD. For your doctor to lump you in with all patients of different severities like that is really inexcusable. Please don't allow your unsympathetic so called "care giver" to make you feel that you are unnecessarily complaining or needy. She has no #$%##&*^ idea!

 

[Ihurt]

Hey Cynthia,

Sorry you are not feeling well.. I would keep an eye the peeling lips and mouth ulcers. There is a condition that some medications can cause called Steven Johnson syndrome where the skin peels off and it can also cause mouth ulcers and throat ulcers. Believe me, you dont want this ( I thought there could not be anything worse than crohns or IC, but this one is pretty nasty). I would maybe call the pharmacy and ask them about the side effects you are having with the methotrexate. They are more knowledgable when it comes to drugs and their side effects from what I have learned.

Your doctor was a jerk to say that to you. You ar NOT a whiner!! You are a person who has a debilitating disease that is very painful! She is just being ignorant. I bet she has said this same crap to her other crohns patients too. I wish I had some insight to offer you... Again, I would call the pharmacy and talk to the pharmacist about the side effects and ask if this is normal, does it usually ease up after a period of time... See what they say.

Hope you feel better soon.. Hugs to you!!

 

[UnXmas]

I know you posted this a little while ago so I thought I'd see how you're doing now. I agree with the other posts above - your doctor was completely inappropriate! Your situation is different from other people - and from the sound of it far harder than the patients she is comparing you unfavourably to! Don't let her misinterpretaion of your situation get you down.

I don't have any answers; it's hard to have hope sometimes. But please keep going. You're not useless at all. xx

 

[Ckt]

UnXmas..thank you so much for your kind words and thoughts!im actually in the hospital right now.. I had a bad reaction to methotrexate causing huge ulcers in my mouth and throat. It was hard to even drink fluids unless they were really really cold!i also had a partial bowel obstruction so had an ng tube for a few days as now will probably go home.
I do feel very ambivalent about this g docktr.she is generally very good and very caring. I think she feels at a loss with me and now that I have another gi docktr who is following me in Chicago because I'm being evaluated for the stem cell transplant program, I feel much more secure. The gi docktr here now includes the gi docktr in Chicago on decisions and he is very thorough.
The plan now is to take a week break from humira and methotrexate so my ulcers can heal..there's a good chance those ulcers are also in my gi track. Them I start back on humira and half the dose of methotrexate. I'm willing to give the methotrexate another chance. The combo therapy seems worthwhile to me.so ifi can withstand the side effects, it could be the answer for me.
Clinically, I know my disease does not look that bad objectively..there are some scattered ulcers in my terminal ileum on mre and via scope last month in Chicago. My labs are pretty normal and my inflammatory markers have always always been negative. So to consider a stem cell transplant seems drastic.
However, I have had 6 bowel resections due to obstructions. I have failed all th oral medicines for crohns and had to stop remicade because I built antibodies up which caused me to have a life threatening reaction(facial swelling, throat swelling, hard to breathe)
Humira has been fairly good until about a year ago when it didn't seem to be as effective. So the methotrexate is supposed to boost the humira. Because of all my surgeries, I have issues with dumping and chronic diarrhea.lomotil doesn't work anymore so they are using tincture of opium and codeine to slow things down. It's working and I'm not having incontinence anymore which is great!
It can be discouraging but I'm hanging in there!

 

[UnXmas]

I'm glad to hear you're hanging on.

It does sound like you're having a terrible time of it. Sometimes our symptoms seem to surpass the objective signs of the disease, but it doesn't mean we're not suffering in terms of quality of life. If you're hopeful about the stem cell treatment and your doctors are willing, it does sound like you're at a point where drastic options need to at least be considered.

I deal with bladder and bowel incontinence on a regular basis and have done for several years since I was a teenager. It was a lot to come to terms with, emotionally. I'm sure you already know, but finding the right products makes a difference. There's a continence service here (in the UK) who were helpful to me just in providing the right products - is there a service like that where you live? If it becomes a problem again I mean - hopefully you'll continue without! You might have to ask, sometimes it doesn't occur to doctors to give us the help we need until you point it out to them.

Somehow - just with time and learning I think - I came to a point of acceptance and the incontinence stopped being an issue, emotionally. It's odd how minor a problem it is now in emotional terms, when I used to spend so much time unable to stop feeling bad about it. I wish I knew how I came to accept it so I'd tell others how to do the same! It sounds like you are coping very well already though.

I hope you'll have some more positives to update soon. I really do admire you for coping with so much.

 

[Ckt]

Thank you all for so much support and kind words! It does get hard sometimes..and I think I cannot go on one more step. But again..SOMEHOW..I can. It's really beyond me how I do it!
Acceptance really is a process. I felt crushed when I became incontinent. I felt dirty and soiled, smelly all the time. We don't have a service to address incontinence I don't think. But ill do more research on the net. As I said, thank The Lord it's not happening right now! Emotionally, it was pretty brutal. I hope it doesn't come back buy know I can get plenty of advice here!

 

[Gut_Doc]

Butterflies, Sunrises,Fresh baked pies, Hagen Daz,Friends, Comfort Food



Bobby McFerrin sings, "Don't worry, be happy". The song is on You Tube, just search, "Bobby McFerrin) Play it when you feel down. I do! (sorry, not a 10 poster, so no url's for me!).

I have Crohn's. For over 4 decades (ya, I am old).

My friend, Crohn's, behaves much as a bank-silent and forgotten until without warning, it fills your life with pain, suffering, anguish, sadness, embarrassment and excuses. It always goes away-sometimes for decades!

So, use Google (or PubMed), perhaps at your local Library, to understand, in simple terms our Disease; the side effects of the drugs we take and maybe how the drug work.
Makes one feel better knowing what the drug does, and that 65% of Crohn's patients taking my drug (many millions of people and me), have peeling lips as well as alternating red and green polka dotted skin.

Hey, you have a few million friends, all having a relationship with their life long partner called Crohn's.

So, Don't Worry, Be Happy!

 

[Ckt]

Well gut doc..thanks for the positive message! I have had crohns probably for 30 years.first trouble was a ruptured appendix in 1983 but I was undiagnosed until 2000.and honestly?if I had a wee bit of peeling skin on my lips I think I could have tolerated it...oozing deep ulcerations not so much. I cannot even brush my teeth right now and am in love with 'Martha's magic mouthwash'! That stuff is da bomb! things are healing up though and ill probably be discharged from the hospital tomorrow.
I've done so much research on crohns and its helped to be informed, to learn all I can about current treatments. I'm a nurse who worked mostly critical care so I didn't really know that much about ibd..I did know how to look things up tho!