Frustrated and alone

[wolfspirit]

Hi my name is Kristi. I have crohn's. I was DX little over a year ago. I suffered for about four years not having any answers. When the doctors finally figured it out I was having surgery to remove two feet of dead illium that was telescoped down to about six inches causing complete blockage. I was put on pentasa and had a pretty good year with the only symptom being chronic diarrhea. I am also on cholestiramine powder and lomodal. The past couple months I have been getting more and more symptoms again. Nausea, pain, more and more diarrhea, fatigue, and body aches. My GI just had me try Imuran. Ya, that didnt go so well. I had a bad reaction so he took me off. I am currently on a prednisone taper. I am waiting to see him again in two weeks and scared to death of the next super toxic drug he is going to want to try. I am trying to work but thats getting more and more difficult with all the diarrhea. My family trys to be supportive but they just dont understand what I am going through. I feel so alone and frustrated. How can my body be betraying me like this?

 

[DJW]

Hi and welcome.

I'm sorry you're going through this. I know how frustrating crohns can be.

Sending you my support.

 

[nogutsnoglory]

It's scary and frustrating but hopefully the right drug and dose is around the corner for you. The drugs are scary but so is this disease unchecked. Wishing you health.

 

[valleysangel92]

Hello there

I'm so very sorry to hear you are having a difficult time right now, many of us here can relate to what you are going through and can understand your fears and frustrations.

I know the medications are scary, they all have huge lists of side effects, but its important to remember that the side effects are just a possibility and having a reaction to one med doesn't mean that they will all effect you in that way. What are your biggest worries with the medication?

We are all here to support one another, you aren't alone any more. This is a place where you can ask questions and vent to people who really do understand what its like to face this disease, you don't have to handle it on your own.

If you need to vent then please feel free to do so, we will always do everything we can to support you, and you can ask us any and all questions, we might not always know the answers and we are not a substitute for medical advice but we will at least try to point you in the right direction and share our own experiences. I hope that you will find this forum helpful and that you get the support you need. If you ever feel the need for a more private talk then you are always more than welcome to send me a private message, even if its just for a chat.

 

[Axelfl3333]

The drugs are there to help and if they were super toxic you wouldn't,t be given them the unchecked results of crohns would be far worse and devastating on your life,try and remember the leaflets with yours meds are a cover your back exercise you,ll get plenty of bloods done to keep an eye on things.good luck

 

[wolfspirit]

Thank you for reminding me that unchecked crohn's is a really bad thing. I am just afraid of trying any more of these really scary meds. I really didnt realize what Imuran was until I threw a pancreatitis like reaction. After that I started researching these drugs my doctor has mentioned. Such as humara and remiside. (Sorry bout spelling) I guess what scares me most is I always seem to be the odd ball. If it can happen it usually does. All my doctors have said I am the one in a million. Such as chicken pox (full blown) six times and shingles with chicken pox at the same time. (Presented as all symtoms of both). Plus my family has history of cancer, liver problems, cancer of the blood (opposite of leukemia), and other genetic disorders including but not limited to autoimmune.

I am trying hard to hold on to my new job. After my surgery last year I lost a really good job. Its been really difficult with all my diarrhea and being so tired. I just dont know if I have the strength to push through like always if I end up with added side affects due to drugs.

Guess I just need to buck up and push onward. Im just so tired.

 

[gemling]

Hi wolfspirit,

I am in a similar position to you. I haven't had surgery (yet), but have some narrowing of my small intestines which hospitalised me three weeks ago with an intestinal blockage. Luckily it cleared itself and I am back on steroids with a taper. I've also been on Azathioprine (Imuran) and whilst I didn't have a bad reaction to it, it doesn't appear to really be doing anything to stop my inflammation coming back, so my IBD team have been discussing starting a biologic for a year and then seeing if I need to stay on it for longer.

So you are certainly not alone and I understand how you are feeling, it's horrible to have your body betray you in this way when some many other people around you have such good health.

 

[Soots]

Hi it's really difficult going through different treatments and trying to find the right one. It's also very hard when you are fatigued to make sense of why you are suffering as you are. But please try nt to think of your body as betraying you cos mind body and soul are in this together and when we are betrayed we want to eject the cause of betrayal from our life which if your blaming your body you can't do. Try to think of your mind body and soul as terminators of the imposter(crohns) or at least an united body to help you cope with unwanted and undeserved condition. It's a hard task but you can do it. Good luck x

 

[Ali29]

I have a lot of the same symptoms that you have nausea/vomiting, diarrhea, pain. Right now we are only able to control the symptoms with med that affect cognitive ability.

Has your GI given you lomotil or lotronex (much stronger version of lomotil)? This helped with my diarrhea at work.

Please know you are not alone, we are all in this together!! Good luck!

 

[Axelfl3333]

crohns is such a frustrating condition it can take a while to get the right combination of meds to help theres plenty of good advice on here,have you tried watching your food you could be unknowingly taking a trigger food that sets you off,i personally don,t as i,ve got to know the danger uxb ones for me.a slice of melon marked my soul!!if things are bad just now try a bland diet see if it calms down chicken and rice,fish try adding turmeric to your boiled white rice its a natural anti-inflammatory,if your needing vegetables soup made with a stock cube with the veggies well cooked and or blended really tasty and good for you.be very wary of dr google good news is no news,try to stick websites like the nhs one in the uk or the usa equivalent.
if you,ve had chronic diahorrea its exhausting and bad for you, get back to the doctors and lay it on thick about whats happening.one final piece of advice remember it will get better.good luck all the best

 

[rrbluesky]

Hi Wolfspirit, Believe me I know! I was diagnosed five years ago. It has been a rough ride. I had a Re-section about four years ago. Your right! No knows the pain and misery we go through day after day. I own a 200 hundred acre ranch in Wyoming and find it hard to be away from a bathroom. So what does my doctor tell me? "No problem! Just take a shovel with you out in the field and dig a hole and go in there". I told her "what do I look like a Caveman". Unbelievable!! I was so down last Winter I thought ok. that enough BUT I look ed up and said I am going to fight my way through this!!! We all have different ways of dealing with this. I am fortunate this didn't hit me till I was in my 60's so I don't have to long to suffer. The only way to get through this is to "find your place". I know that sounds weird but it has worked for me so far. There are days that are tough, very tough but I MED UP on those days. I been on just about every med. you can imagine. The Imuran almost killed me. Literally!! I could go on and on but the best thing is to do is take one day at a time. Some or better then others. Live the days that are good and survive the days that aren't. All the Best and get better.