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Finding the strength to keep going

Hello everyone!
I'm new to the forum. I have been reading it for a couple of years (what a great source of advice!) but now I want to take part too.

I have been on and off sick since I was about 9 years old, including taking time off school and university. I would have months of diarrhea, nausea the sort that feels like it is running through my veins from head to toe, and no appetite, and felt "strange" (that is hard to explain to the doctor). I was sent to psychologists, and for bracing holidays at the seaside.

Now I am 41. 4 years ago I was pregnant with daughter #2 and at about 7 weeks I started getting sharp pains in the lower left side and had urgency for the toilet. That continued and got worse with abdominal discomfort on the left side and trips to the toilet several times in a couple of hours. I was so fatigued, nauseous (but not pregnancy nausea), and lost my concentration. I gave up my job because I could not function. I had to lie down in the street a few times, my body just had no strength even to walk short distances.

Luckily the baby was reasonably healthy, but my symptoms got worse after birth. I was running a slight fever (38C) and was having Bms up to 8 times a day. I spent most of the time in bed feeling too sick and tired to do anything.

About 7 months after giving birth my fever shot up to more than 39C and I was running to the toilet about 30 times a day. My GP sent me to A+E (ER) and they sent me home after checking for sepsis. At the follow-up I said that I was still not well and the consultant asked for a colonoscopy. That came back positive for left sided colitis consistent with a pattern of Crohns, but the biopsy was not conclusive.

By this time my weight was down to 40 kg (BMI of 14). The consultant gastroenterologist (who did not do the colonoscopy) said it was in my head, I was anorexic and I needed to see a psychiatrist. I was so shocked but I was too ill to say or do anything. Does that sound familiar?

Roll on one year and much internet searching to find ways to self-treat bowel inflammation. It helped, but not enough. I managed to see the gastroenterologist who did the colonoscopy off-record (the man deserves a medal), and he suggested starting Asacol treatment to see if that helped. It did, and my GP recently gave me 14 days of Pentasa suppositories to help treat the morning pain and urgency. That helped too!

Now I have just seen the same gastroenterologist officially this time, and he wants to do another colonoscopy (I prefer a sigmoidoscopy) to see how the inflammation is now. He said that because I still have some pain (and some joint pain and some fatigue) maybe it would be better to change the treatment, but we will wait and see the results of the oscopy first.

So that is it, wait and see. I am in a far better place than I was 2 or 3 years ago, when I actually would have been quite happy to die. It sounds terrible, but I have had a good life and I am very grateful for that. Now I am still underweight, tired, and a long way from leading a full and active life as I would wish, but maybe I need to accept it will always be like that, and I am not getting any younger.

My biggest problem in all of this is having a partner who does not believe in illness, he has no empathy or sympathy for my situation, and no interest in finding out what is wrong. I would love someone to get in touch if they are in a similar situation. I live in a different country to my family and feel like I have no support nearby - although I do have friends I can rely on for those really bad days when I need help with the children.

:sign0144:
 

Cat-a-Tonic

Super Moderator
Hi, welcome to the forum. Your last paragraph really made me sad - my husband was very unsupportive as well when I got sick - similar to what you said, my husband has always been extremely healthy and he just couldn't wrap his head around the thought of being chronically ill. He would act exasperated with me and he made comments which indicated he thought I was either faking for attention or at least was not as sick as I said I was. I was starting to think about getting a divorce, it was just a terrible situation. Then, fortunately (for me), he got sick too! He would suddenly get terrible abdominal pains that would come on out of nowhere, he would vomit from the pain, he would have to miss social events because of the pain & vomiting, he was just miserable. His issue turned out to be kidney stones, and he had them for 6 months before finally having surgery. He had a miserable 6 months and he got a taste of what my life is like. Now, he's much more supportive and understanding! It's weird to say, but kidney stones saved our marriage.

So, I have been in the situation you are now in. Unfortunately, I realize that's not very helpful to you unless your partner gets similarly ill. All I can suggest is that you have him read some of the things that are on this site, that could help him get a better understanding of what we go through. You could also have him read the Spoon Theory, which is an essay that was written by a chronically ill woman in an attempt to explain to healthy people what it is like to live with chronic illness every day. Here's the link to that:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Good luck with him. It's so awful to have to deal with such a difficult illness, and then on top of it to not have support from the person who is supposed to support you the most. I hope things get better for you! The forum is certainly here to support you even if we're not there in person! Sending you a big virtual hug.
 
I'm sorry you're dealing with this illness without all the support you deserve. Cat-a-Tonic makes some excellent suggestions. I only wish there were a way for us to get those who have never experienced IBD (or any illness) to know what it is to live life so weak and pained and tired even for a day! Nobody would choose this life and even if they did, I think it would be pretty hard to manifest some of the undeniable physical symptoms of strictures, fistulas and bleeding through sheer force of stubborn willpower but I guess we have to accept there will always be doubters and use our energies to fight this disease instead. I just wish you weren't dealing with that so close to home.:thumbdown:

Please know that you have support here :ghug:

I do want to say (and I know that you say this because you are so tired and sick) but 41 is not old. You are not old enough to give up. I've been there and felt like that - at 26 when I was malnourished and with a BMI of a bit less than 14 (i.e. life threateningly low as yours is/was?), getting pushed around in a wheelchair even on occasion and getting no help from my consultant. He even said the words "there is nothing I can do for you. Go home. I can't help you." So yes I felt like giving up. The continuous pain, the fatigue, it simply all took it's toll. But I had my mom and she never ever let me give up - even when I really wanted to. We worked on getting me a bit better nourished with tube feeding (my GP organized it) and I felt more able to face the future whatever it may hold. I got an appointment with a surgeon (completely bypassing my GI who wouldn't help) and I had my second surgery. I won't pretend that was the end of things - I had a fourth surgery last summer and before that I kept saying to my surgeon that I didn't want to have it, that I didn't see the point. I'd say to him that I was now 35, I'd lived a lot of my life and I was old enough to decide when enough was enough. But he wasn't buying that either. He said 36 was too young to die - or to give up on quality of life - so I'm saying the same to you. In the most supportive way I can and with the best of intentions and a big hug - you cannot give up yet.:hug:

I definitely think you need to get some more calories in. Being weak and tired doesn't give us the best chance of fighting this disease or living out life to the full. Have you ever tried a liquid diet like Modulen or Elemental? Or even if it's just supplemental the extra calories and nutrients that you can get from drinks like Fortisip are so helpful when you are at that low point that you're at. Ask your doctor if they'll prescribe for you.

Also please please do not accept that things will be like this forever. You are only at the beginning of this journey treatment-wise. You might feel like a completely new woman on a biologic and/or immunosuppresant. Or some other magic therapy that will come along for you. Don't give up!!! :sun:
 
Thank you for the comments. I had been secretly hoping my husband gets a chronic illness so he gets a taste of what life could be like! How can I bring on kidney stones Cat-a-tonic? Only kidding of course!! :voodoo:

I will look up the links, but I don't think the attitude "my family does not do illness and therefore nor do I" will change. That makes me sad for him. I know that I have to look after myself because no-one will do it for me, and that realisation made me stronger. No point depending on someone who will not give the support needed, that is simply frustrating and disappointing.

I don't expect the forum to be a marriage counselling service :confused2:, but I suspected I was not the only one in this situation. It's great to see the relatives and friends on the forum who are fighting someone else's corner and getting the help they themselves need too.

As for putting on weight, it is going up s l o w l y but surely. I am not one to count calories but I thought maybe I should, and I know I am on at least 2000 on a normal day, yesterday was 2600(!). My appetite is back! My bmi is up to 18 now. I have a thing about being underweight, I absolutely hate it. Anything that stops me eating normally just for a day or 2 (a bug or sometimes my pmt) makes me nervous because it is taking a step back that I need to make up again.

Thanks guys. :ghug:
 

Cat-a-Tonic

Super Moderator
For what it's worth, my husband was eating a TON of peanut butter (he'd go through a big jar of peanut butter every 2 weeks or so - for breakfast he'd have 2 or 3 bananas and just completely slather them with peanut butter) and apparently that was the likely cause of his kidney stones. He still eats peanut butter but has cut way back on how much he eats, and he hasn't had any stones since. So perhaps if you tell your husband that there's this awesome new diet where you just eat a ton of peanut butter every day... ;) Kidding of course.

No, you're definitely not the only one in this situation. And no, we're not marriage counselors here, but we are definitely here for you and some of us have been in very similar situations and know how you're feeling. We can't necessarily fix things, but we can support you through whatever ends up happening.

Oh, and I agree with 24601 - 41 is not old! I'm 35 so I'm close to your age, and although this illness can certainly make us feel old at times, we're not old. :)
 
Location
Texas
So sorry you are having such a rough time on all ends. This Forum has helped me tremendously, mentally and with questions/meds, etc for the Dr visits. Sending you strength to overcome all the issues you have having.:ghug:
 
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