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The more I get to know about my condition, the more I panic

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Crohn's Disease
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Posted 3/4/2017 5:38 PM (GMT -5)
Saw my GI because of the excruciating pain. He attributed it to a flare up and said that things will be get better in 2 weeks after Remicade kicks in. Was very sick and in pain and I couldn't argue about this Does this mean Remicades effect is temporary? Will ask next time I see him. He was totally against the idea of either adding pred or upping entocort and said if in two weeks you don't get better, we can consider upping entocort. I was prescribed mebeverine hydrochloride with dimethicone and celebrex for pain.

What annoyed me was the transparency. He didn't seem that shocked to know I developed Hidradenitis Suppurativa and almost said it's normal. I asked him wasn't my Crohn's mild. He replied yes for 10 years I used to tell you I have suspicions but it is not mild anymore. It's like a genie that has come out of its lamp (simile is mine to convey what he said) but it more or less gives the same meaning.

I'm worried about the prognosis. Can we Crohnies win a battle with Crohn's or are we doomed to be defeated?
Posted 3/5/2017 10:42 AM (GMT -5)
Minnie, I have read many of your posts here although I do not post often here. To answer your question of winning the battle or being doomed to be defeated. Yes, a person can get better with crohns & have a life.

I was not dx'd until I had to have an emergency small resection. I had the classic symptoms for a good 20 years but was always told it was something else. Because of long term use of steroids for something unrelated it kept things at bay. The Er dr initially thought I had appendicitis so they took them out only to find nothing wrong with them. Thank goodness the surgeon decided to open me up lower & found the abscess & blocked. This happened out of the country while on vacation.

When we got home I saw 3 different gi's that said you had surgery your crohns is gone. Well, it wasn't gone & I ended up even sicker. I finally had a nurse that gave me the name of a gi in another town. Thank goodness he listened & believed how sick I was. I started on Remicade & very quickly moved to having my infusions every 4 weeks. He said if we have to, we can do them every 2 weeks. I did them every 4 weeks for 3 1/2 yrs. During this time I developed a fistula that it took care of. I was terrified of Remicade & every time something a little different happened I immediately thought its related to Remicade, when in fact it wasn't the Remicade. I never got sick with the usual stuff, perhaps because I was taking better care of myself overall. One thing that did happen is I developed anxiety out of all of my fears. Hind sight 20/20, my anxiety was worse than anything I was dealing with, lol. It took awhile to turn me around. Actually I sought counseling things got so bad.

It wasn't perfect with Remicade but after awhile things slowed down. I later developed antibodies to Remicade & went on to Humira. I did good with it but it brought out my psoriasis full bloom. I ended up stopping the Humira as I have several forms of psoriasis & it just brought out the very worst of it. At that point the gi said no more bio's. Currently, I have been fortunate with keeping things under fair control with Imuran. I have my days but I manage.

By the way, I looked up HS on the Mayo Clinic's site & read some great info there about it. From reading your posts it seems like you have a fairly good gi & he is good about responding to you in a decent time frame. You many want to consider talking to him about doing your infusions every 4 weeks. My gi explained it to me each patient is different & it needs to be tailored to the patients needs.

Take care.
Posted 3/5/2017 11:35 AM (GMT -5)
Hi Minnie, Hang in there, I agree with Susie.
Yes I believe people can recover even from tough cases and have a life its just harder some times to find right treatment. Looking back, I feel like aside from a short time while I was on humira I was just in one big flare for many years. The hardest thing now is dealing with picking up the pieces of my life.
My former GI did something similar when I ended up with the obstruction. I had been telling him about the mild pain I was having on and off for several months. I went to him when it got worse he told me to give it another week and take some IBS meds. before that week was up I ended hospitalized with the obstruction. I called him and before I could even say more than I'm in the hospital, he said with an obstruction right? All I could think was why didn't you tell me that was a possible cause for my pain!!!

I think the issue with your doctor is the lack of transparency he had before. At least if he had prepared you for this as a possibility when you weren't feeling as bad, it wouldn't be such a shock on your system. Still, I think you have a good one but you need to let your doctor know how hopeless you feel and you need him to give you some hope. Is surgery an option? would it give the area where the fistula is a chance to rest? I know its not ideal and I haven't experienced it but is seems like you really desperately need a break.
Posted 3/5/2017 2:05 PM (GMT -5)
Hi Minnie,

I know you've been having a really rough time for a long time but you need to keep hanging in there, being an advocate for yourself and working to get better. This disease can really mess with our mental state in addition to all the physical issues. There's nothing wrong with feeling down about it from time to time but if you're really struggling with the emotional side of being sick, you might want to consider getting on a low-dose antidepressant. I know some people are against them and who wants to add another medication, but for me it helped a tremendous amount. I avoided taking antidepressants for over a decade and finally started when in a really tough spot physically and mentally three years ago. Since then, I have felt more able to deal with all the crap the gets thrown at us.

I hope you find the right treatment soon to get you back into remission and we're all here for you in the meantime.
Posted 3/5/2017 10:46 PM (GMT -5)
Minnie,

You can do this. Right now, in this battle, you probably feel like Crohns has circled your flank and you have doubts. Remember...Always Remember....repeat it to yourself... I may lose a battle but I Will win this war. It won't be pretty or polite or nice. I may have to fight dirty but I will win this. Repeat it until you believe it.

I have friends that have been in worse shape than me and they have come back and they are doing better than they ever have. It amazes and astounds me. It gives me hope. I am determined to be like them. They go hiking and camping. I always ask them what their secret is...They all tell me to believe, to laugh often, love hard, to live your life to the fullest...and even when you face your toughest battles and you are getting your hinney handed to you....to keep researching, searching and believing.

You can do this. We are here for you to share your successes and to help when you need us.

The anxiety pills. ...research them carefully. Some of them are difficult to get off of and even the doctors don't seem aware of the proper tapering schedule for them. If you need them for awhile you need them.

Hang in there. Tomorrow is a new day.

Clo
Posted 3/6/2017 5:29 PM (GMT -5)
Dear all, thank you so much. I really appreciate it. Your words are very inspirational and motivating. They give me the boost to fight this darn disease.

Pain is constant but according to my GI I have to wait for 2 weeks until Remicade kicks in and the antibiotic clears my system. I doubt I'll be able to reach this 2 week time frame.

I'm taking now Xanax to be able to sleep still I wake up after 4 hours because of pain.

Wanted to reply to each post separately but I can't concentrate. I took the celebrex and am sitting in bed like a zombie. All what celebrex does is affect my thinking; I have a foggy mind but does not kill any pain.

Thank you all again
Posted 3/6/2017 9:25 PM (GMT -5)
Sending hugs and strength your way, get rest and keep fighting!
Posted 3/7/2017 12:13 AM (GMT -5)
Ohhh Minnie....

No word just lot of (((((Hugs))))).

Clo
Posted 3/7/2017 5:05 AM (GMT -5)
Lab and Clo, thank you so much
Posted 3/7/2017 10:31 PM (GMT -5)
Minnie,

Two weeks seems like a long time for him to ask you to wait.. I don't know because my GI is always rushing me to the ER....

I am just concerned and really really don't like thinking of you in pain for that long. And pain pills can cause constipation or diarrhea. .. I am dithering.....

I wish there was something I could do. A magic wand ...

Take care....

Clo
Posted 3/8/2017 9:12 PM (GMT -5)
Clo, thank you so much. I really appreciate it. I feel helpless. I need something to relieve my pain but knowing my GI, as long as he said wait, then I have to wait but things don't seem to improve or get better
Posted 3/9/2017 4:32 PM (GMT -5)
Minnie,

You are more patient than I am. I would be camped out in his office moaning really really loud until he did something.

Crohns is such an awful disease. So much pain and suffering. I pray every day for a cure....and if we can't have that..... then for doctors that will give us really good pain meds...

Hang in there!

Clo
Posted 3/9/2017 4:41 PM (GMT -5)
Minnie - Have you tried a painkiller like codeine or tramadol? They aren't too madly addictive and I find them decent for Crohn's pain. The problem is getting a doctor to prescribe them in this country - they act like codeine/tramadol is more addictive than heroin and crystal meth combined. (My dad gives me codeine, 'cos GPs seem to prescribe him all sorts - sleeping pills, codeine, and so on.)

Codeine can cause constipation, a problem I know you have sometimes. I'm not sure about Tramadol. You can always counteract the constipating effect by taking a stool softener at the same time.
Posted 3/10/2017 4:02 AM (GMT -5)
Dear all, I don't know how to thank you all enough. I took yesterday before bedtime 15 ml of lactulose and another 15 ml today after breakfast and I had my first bm in 8 days. I'm not worried if I get d as I can deal with it. Apart from the throbbing pain that hits all of a sudden and necessitates I curl in bed, everything is fine. I was concerned I had a kind of partial obstruction as eating or passing gas would cause severe excruciating pain but I think things are getting better now. If this throbbing pain that would be set off immediately after the effect of the antispasmodic wears off does not subside within a couple of days, I'll see my GI.

@NCOT. Yeah, getting either tramadol or codeine is more difficult than getting addictive drugs. Ten years ago my GI used to prescribe me tramadol but I don't remember it used to kill the pain. On the contrary, I used to feel high and laugh incessantly when I took it. I think this why it's considered to be an addictive drug ;-)
Posted 3/10/2017 9:05 AM (GMT -5)
Minnie - It sounds like you were given laughing gas rather than tramadol >_>. It's actually considered to have less addiction potential than pure opiates, like codeine and morphine. But docs still act like it's as dangerous as injecting heroin. Personally I liked tramadol when I took it, because it was an effective painkiller without any obvious side-effects. I can't take it now 'cos it clashes with the duloxetine I'm taking for depression.

It's obviously better to treat the source of the pain than mask it with painkillers. But if the source can't be found, or it can be found but can't be treated, then I am definitely in favour of using painkillers. This shingles pain doesn't match my worst Crohn's pain, but it's not that far behind. It's proper bad and I would take anything to reduce it.
Posted 3/10/2017 8:29 PM (GMT -5)
Minnie,

Just checking on you. Hope things are going better...

Clo
Posted 3/10/2017 9:44 PM (GMT -5)
@NCOT. Hope the painkiller alleviates your shingles pain. I've never had but it's awful. Hope you get better soon :/

@Clo. Oh, how nice of you. Really appreciate it. Got better and then relapsed. Can't figure out what's wrong. Will try to see my GI.
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