16 year old girl with Crohn's - The long journey to a diagnosis

[cloud]

Greetings from my throne
I have been lurking around here for a while now, and I have finally found the guts to actually write my first post (puns intended). Also I'd like to apologise in advance to any guys who do not wish to hear about my menstrual woes. I'll try to keep it succinct.

For most of my life I have had intermittent diarrhoea, however the last couple of years it has been getting progressively worse. Once my periods started, I got to the point where I was getting severe abdominal pain with them, diarrhoea (as in going to the toilet around 30 x a day) and passing out frequently from the pain as well as vomiting. I would get extremely swollen knees, and would have trouble just getting to the toilet. At first, I thought it was just because my body was adjusting, however after two years of this, I saw a gynaecologist, and tried everything including Implanon, IUDs, Combined Birth Control Pills, Progesterone only pills with no luck. They were making the abdominal pain worse; and causing me to bleed for weeks at a time.
Suspecting it was endometriosis, I underwent a laparoscopy last year, and we were quite shocked when the report was spotless. These symptoms began happening even when I didn't have my period, and I made the link between them and the diarrhoea.
I was referred onto a gastroenterologist, who then did a colonoscopy and and an upper endoscopy. The biopsy showed gastritis, and a lactase deficiency, but there were no signs of Crohn's or colitis, except for a positive stool sample.
A week later, I had a pill camera study which showed lots of ulceration of the small bowel, indicative of Crohn's, which I must admit was a bittersweet diagnosis. I received the news about a month later which was a relief. I can't say I was surprised, because the is a lot of Crohn's and IBS in my family.
Having put up with constant cramping and diarrhoea for 6 months without a diagnosis, I had began to question the nature of my own pain. I tried to convince myself that nothing was wrong. I had been passing a lot of blood, and had lost nearly 8 kg, so I was pretty concerned, and being told that I was perfectly healthy and normal by doctors came as little consolation.
I started on Prednisone and Pentasa, however after about a week and a half of Prednisone I vainly chose to taper, because my finally perfect skin chose to revert back to its cystic, pimply self. This was the main factor in my decision, but not the only reason. Things had settled down and luckily I was feeling pretty good, even off the Prednisone.
About a month ago, (again with the start of my period) I began to flare again. I had vomiting and diarrhoea, and was not keeping liquids down, so my GI admitted me to hospital where I had some fluids and IV steroids.
After tapering the prednisone this time, I have began to flare again I am going to start Methotrexate, however I am very reluctant. I'd love to know whether any teens my age have taken it, and what their experiences have been with it. Apparently a blood test showed that I don't metabolise Imuran well, so that was the main factor in this decision. If Methotrexate does not bring things under control, I will start one of the biologic drugs.

As for diet, I used to be a vegan, however I find that veggies alone manage to go through me within half an hour. I have swapped to a grain-free, lactose free, modified Paleo diet, and whilst it doesn't stop things, I have found that eating a lot of meat certainly slows things down. I also eat heaps of fat (avocados, coconut oil, ghee, eggs, etc.) has helped to not lose as much weight as I do when things flare up. For green stuff, I have been putting it through the nutribullet, cooking it, then putting it through a strainer to make sure there are not bits left. This allows me to get a lot more greens into me than my gut would normally tolerate.

I would love to meet some other young people with IBD, as I have missed a fair bit of school lately, and that does throw some friendships off. People for the most part have been incredibly supportive, but I find it very difficult to explain to my friends what goes on when I'm away. Some think it is funny, but I usually laugh with them too, because if I didn't, I think I would cry. I'd really love to make some new friends that understand what goes on.

Thanks for taking the time to read this far. Hopefully it hasn't been too graphic, whiney, or long, and I hope that somebody might find a bit of my experience useful to apply to their own, and I hope and pray that they might have a quicker diagnosis (and thus a quicker treatment) than I have had. If you have any questions, or any advice for me, I'd love to hear it, or just to hear from you!
--
Cloud

P.S. Are there any ladies out there who get periods from hell? It always seems like periods exacerbate anything going on with my gut at the time. Has anybody found a link between Crohn's Disease and menstrual issues? Please let me know if you have found anything that works, regardless of what it is. I am experiencing a flare up at the moment and I have only had a couple of hours sleep for the past 3 days because of the cramping, diarrhoea and pain. I am at wits end, and am willing to try absolutely anything!

 

[FrozenGirl]

Welcome! We have many people here who didn't present with the ,typical' symptoms. Check out methotrexate forum under the treatment section, lots of people will have advice and tips for you. Being a teenager is hard and being one with ibd is harder. I was a couple years older than you when I was diagnosed andy beats tips are: tell your teachers if you haven't. If you are missing school they may be able to help. Find a trusted friend you can tell everything to so you have someone. If you want to not go as specific on the details to everyone that's okay, whatever makes you comfortable as is easiest with your friends.

I do find my Suptime flare up more on my period. Not entirely sure why other than maybe a hormonal thing. Have you talked to you family doctor or your GI about them. Maybe there is something they can suggest. ( there is also a female only forum if you wish)

Things that help me, biggest is a hot pad for the pain and cramping. Doesn't get rid of it but it's easier to deal with. I have also used Lomatil but talk to your doc before using anti-diarrheal meds, they have to be used very carefully with IBD.

 

[24601]

I'm not a teenager but I wanted to say hello anyway because I can definitely relate to some of the things you are going through. I was 17 when I was diagnosed very nearly 20 years ago. And though it feels like several lifetimes ago in one way, it also feels like yesterday when I first took pred and hated getting spots and retaining fluid and also in my case (and perhaps weirdly) flushing bright red all the time. Anyway my story is a long one and I shan't go into that whole thing but I do now take methotrexate as I don't tolerate azathioprine or 6mp and I am pretty happy with it - at least in terms of side effects because I don't seem to have any. I also do humira injections once a fortnight after switching from infliximab.

Also yes I absolutely get periods from hell. For me that issue didn't start right away. At first I was on pred and didn't have periods at all, and that continued with budesonide too. My periods restarted for a brief time when I stopped budesonide but then I became very malnourished and they stopped once more. I had surgery (a resection and multiple strictureplasties) and gradually put on weight and my periods restarted and sometime shortly after that I suddenly experienced extreme bloating and vomiting, unable to keep down any water and I was in fairly continuous severe pain. It felt like an obstruction but after about 24 to 48 hours my period started and the symptoms resolved. I sort of thought they were connected at the time but I was so relieved to be feeling better and not be hospitalized that I was happy to tell myself it was a one off. The same thing happened again to an even greater extent the next month - it lasted a few days this time and was so bad with severe diarrhea which I didn't normally experience then so I was initially convinced that it was food poisoning. When my period started the penny dropped that the symptoms were connected. I never really felt that I got anywhere telling my doctors about this connection or coincidence of symptoms but all the female friends I talk to seem to think it is blindingly obvious that those of us with IBD would experience some pretty awful bowel/gi symptoms with our menstrual cycles if their experience with a regular gut is anything to go by. I don't have any answers for how to prevent this worsening of symptoms connected to menstruation - and I wish I did - but in the end I came to the same conclusion that you already have that what we are experiencing is an exacerbation of what is already happening with our guts. So although I wanted to be able to prevent the very worst symptoms at that time of the month what I actually needed to be doing was, in my case, focusing more on what it was telling me about the state of disease in my gut - for me I believe the treatments I was on weren't really working and I had strictures that I could just about cope with without the exacerbation of my period, but not during it. I still experience increased symptoms around the time of my period but nowhere near as badly as I did at that time with bad strictures.

I hope you find some more help on that subject than I have to offer! But I thought I would just share

Also I just want to say don't worry about being too graphic - you weren't even close! Or too long - I think you summarized your experiences succinctly and with humour, intelligence and perspective. And included a lot of information that will be useful to others - I for one am inspired by your efforts to make sure you get the best nutrition that you can despite the limitations Crohn's can place on what you eat.

And never worry about being whiney. I mean no one likes a true whiner but when you have real things that you are going through you are allowed to talk about them

I hope you get some relief from this flare soon. Have you ever tried buscopan for the cramping? Perhaps combined with an anti-diarrheal like lomotil. Also have you tried going on an exclusively liquid diet during a flare or during your period? For me a liquid diet was often very helpful, and was one of the few things that ever gave me relief from my symptoms.

 

[araceli]

Welcome to the forum. I am sorry you are going thru such hard time being so young. My daughter was diagnosed at 14. I hope the medicine works fast and you can get better soon. You can go to the teens only section. Sending Hugs and Support your way.

 

[cloud]

Also yes I absolutely get periods from hell. For me that issue didn't start right away. At first I was on pred and didn't have periods at all, and that continued with budesonide too. My periods restarted for a brief time when I stopped budesonide but then I became very malnourished and they stopped once more. I had surgery (a resection and multiple strictureplasties) and gradually put on weight and my periods restarted and sometime shortly after that I suddenly experienced extreme bloating and vomiting, unable to keep down any water and I was in fairly continuous severe pain. It felt like an obstruction but after about 24 to 48 hours my period started and the symptoms resolved. I sort of thought they were connected at the time but I was so relieved to be feeling better and not be hospitalized that I was happy to tell myself it was a one off. The same thing happened again to an even greater extent the next month - it lasted a few days this time and was so bad with severe diarrhea which I didn't normally experience then so I was initially convinced that it was food poisoning. When my period started the penny dropped that the symptoms were connected. I never really felt that I got anywhere telling my doctors about this connection or coincidence of symptoms but all the female friends I talk to seem to think it is blindingly obvious that those of us with IBD would experience some pretty awful bowel/gi symptoms with our menstrual cycles if their experience with a regular gut is anything to go by. I don't have any answers for how to prevent this worsening of symptoms connected to menstruation - and I wish I did - but in the end I came to the same conclusion that you already have that what we are experiencing is an exacerbation of what is already happening with our guts. So although I wanted to be able to prevent the very worst symptoms at that time of the month what I actually needed to be doing was, in my case, focusing more on what it was telling me about the state of disease in my gut - for me I believe the treatments I was on weren't really working and I had strictures that I could just about cope with without the exacerbation of my period, but not during it. I still experience increased symptoms around the time of my period but nowhere near as badly as I did at that time with bad strictures.

I hope you find some more help on that subject than I have to offer! But I thought I would just share

Also I just want to say don't worry about being too graphic - you weren't even close! Or too long - I think you summarized your experiences succinctly and with humour, intelligence and perspective. And included a lot of information that will be useful to others - I for one am inspired by your efforts to make sure you get the best nutrition that you can despite the limitations Crohn's can place on what you eat.

And never worry about being whiney. I mean no one likes a true whiner but when you have real things that you are going through you are allowed to talk about them

I hope you get some relief from this flare soon. Have you ever tried buscopan for the cramping? Perhaps combined with an anti-diarrheal like lomotil. Also have you tried going on an exclusively liquid diet during a flare or during your period? For me a liquid diet was often very helpful, and was one of the few things that ever gave me relief from my symptoms.

Thanks a lot 24601 for your kind and thoughtful response. I am very relieved to hear that you are having some luck with methotrexate. Some of the information out there about it is a little bit scary, so it is great to hear from some real people who are fine on it. I'm really sorry to hear about your rough ride with Crohn's, but the part where you have mentioned about menstrual issues has been very validating for me. Your theory about them exacerbating GI issues present at the time makes a lot of sense to me. I have taken a fair few Lomotils since last night, and they are making the situation more manageable. I have found that in the past that making some fresh ginger tea works pretty well when they aren't too bad. It really sucks that some of us with Crohn's can't take ibuprofen. With ibuprofen they used to be somewhat controlled, but now I have a diagnosis and can't take it, things have gone off the tracks. Thanks for the recommendation of a liquid diet. I have had mainly bone broth today and things are slowing down. Thanks heaps

Thanks frozengirl for the link to the methotrexate forum and for your great tips. I have spoken to my GI and GP about the menstrual issues, however they don't seem to have much to offer. I will definitely keep trying alternatives, because I don't want to stay on endone every six hours to function normally during this time. If I find anything that works or that helps a bit, I will definitely let you guys know.

Araceli, I am still learning to navigate the forum but I will definitely check out the teens only section. Fingers crossed that the meds will bring things under control

 

[emmaaaargh]

Welcome to the forum! I'm 16 too - and I'm really sorry this has hit you when it has. There's no good time, obviously, but right now - well, it's probably one of the worst.
I don't have any experience with methotrexate, but I just wanted to echo that there are so many members of the forum that have found it helpful. I hope it works that well for you, too!

I also get the periods from hell. I'm asymptomatic at present, but when I'm on my period everything seems to return - cramps, stool issues, etc. I've no idea what the connection is, but it's apparently not uncommon in women without GI issues too, so it's not just us.

I don't have any more information that could be of much use to you, since you seem so well-informed already! But I want to wish you luck with the methotrexate, and second the recommendation for the teens only section. There aren't many of us that are regulars, but it's good to know that other people are going through similar stresses.

 

[Nancye50]

I'm almost 40 but have considered having a Mirena placed to lessen my symptoms around the time of my period. I had one a while back but had it taken out, thinking it was causing migraines (needed glasses).
I've also considered uterine ablation but that's a permanent thing, not for teens!

 

[Muppetgirl]

Hi Cloud, sorry you are going through this. Its crappy not feeling understood at any age but can be especially challenging when your of an age where statistically less people share first hand experience. Your in the right place here though.

I just wanted to add on the menstrual exacerbation front that there is some evidence that in some painful conditions (like osteoarthritis for example) estrogen has a modulating effect on pain. Interestingly it can improve or worsen pain, and it can either be the drop in levels with menstruation or the increase at ovulation, in the case of migraine it can even be triggered by both! So it's not straight forward and I think there is a way to go with understanding it but your not alone in having a relationship between it and another disease. There is also a suggestion that this type of modulation is more likely in conditions that cause chronic pain.

http://www.ncbi.nlm.nih.gov/pubmed/17951003

I know this doesn't cover the worsening of your other symptoms but I hope it helps a little. The bowel and reproductive system are so close together in women that if one or both systems is kicking of with inflammatory responses, I personally don't think its surprising that they might irritate each other. Hopefully if the crohns settles down you will have an easier time of it on the menstrual side. There are GNRH agonists (put you into a temporary menopause) but they are only licensed for short term use and they would probably be considered drastic in your case. I wish you good luck with it all anyway.

 

[cloud]

Hi Emma. Wow we are both 16! That is great to hear that you are asymptomatic at the moment. Thanks for wishing me luck. I am hopeful that I will come into remission soon. I am not happy, but reassured to know that you too among a lot of others are also getting similar gynae problems. It appears to be yet another little bonus in the Crohn's package!

 

[cloud]

Thanks Muppetgirl for the link that you have included. Everything that you have said has made a great deal of sense! Sorry to see that you have endometriosis. What a nasty disorder to have mixed with GI issues...I hope you are doing okay at the moment!
I am not sure what the next step is from here. I have tried everything hormonally with no luck, and cannot take NSAIDs to reduce the prostaglandin production. I could almost consider an endometrial ablation, because I cannot spend weeks at a time pouring and function normally. I think I will see the gynaecologist and see what options are left to get things under control.

 

[cloud]

I'm almost 40 but have considered having a Mirena placed to lessen my symptoms around the time of my period. I had one a while back but had it taken out, thinking it was causing migraines (needed glasses).
I've also considered uterine ablation but that's a permanent thing, not for teens!

I did have a Mirena in for a bit over a month and had a horrible experience with it. They put it in at the same time as they did a laparoscopy. I had heavy bleeding for the whole time, migraines that would make me vomit most days, and just constant abdominal cramping. Some nights I'd only get a few hours of sleep from the pain. The gynaecologist wanted me to stick it through, however I had exams and stuff at the time, so I ended up getting it removed and it was instant relief. I don't think it was a very good idea to put it in a teenage girl like me, who has never had children...

Sorry for the rambling, but I thought I would share my experience just to remind others that it it is a bit of a lucky dip as to whether or not it will like you. And it does hurt a lot initially, but for a lot of people it gets better. I know of many other women who have had great success with it, and also ones with IBD who love it, so I am not convinced that it is all bad.

 

[kimmidwife]

Hi Cloud!
my daughter is 17. She gets ad period pain too. I definitely think there is a link between the crohns and menses.
welcome to the forum. have you checked out the teen section?

 

[Muppetgirl]

Thanks Muppetgirl for the link that you have included. Everything that you have said has made a great deal of sense! Sorry to see that you have endometriosis. What a nasty disorder to have mixed with GI issues...I hope you are doing okay at the moment!
I am not sure what the next step is from here. I have tried everything hormonally with no luck, and cannot take NSAIDs to reduce the prostaglandin production. I could almost consider an endometrial ablation, because I cannot spend weeks at a time pouring and function normally. I think I will see the gynaecologist and see what options are left to get things under control.

Thanks for your kind thoughts. I'm sorry things feel so out of control at the moment. If you have reached your wits end then I guess you could have a conversation with your gynae about GNRH agonists. They are mainly used for endo and prostate cancer and most are monthly injections. They supress the hormones (LH and FSH) that stimulate the ovaries to release an egg, so ovulation is prevented and oestrogen drops to menopausal levels for the duration of treatment. Obviously the side effects are similar to a menopause, so its not a treatment to be taken lightly. I'm not suggesting this would be right for you - thats for you and your docs to figure out- and there may be licensing restrictions depending where you live, plus your age as a factor. For some women it can establish that their cycle is to blame though and some do find substaintial if temporary relief.

Do you struggle with uterine pain or heavy bleeding etc? If it's more the bowel side it may be you'll have more success with treatments there. If possible it's a good idea to ask your gynae and gastro to talk to each other to improve your treatment plan. I hope things settle for you anyway.

 

[_aprillll]

Hi Cloud!
I'm your age too! I'm so sorry you have crohn's. It really sucks. I totally understand about the friends thing, I feel like they don't understand sometime. I do have one great bestfriend though who is great at trying to though. She's basically my person! I was just diagnosed in December. I was admitted into the hospital last December with Septic shock and it has been a lon journey just to this point I'm at now. I have a fistula and an abscess so I take remicade. I just finished prednisone tapering. I'm having a flare right now but I'm also on my period so I wonder if that's why. Never thought of that! I also have a cyst on my right ovary. I started back on liquid diet to help with the flare. I hope you find your way in this crazy thing called life with our diagnosis. Wishing you the best of luck!

 

[cloud]

kimmidwife that's great that I'm not alone. I'm checking out the teen's section now
_aprillll Nice to meet you Sorry to hear about your struggle with everything. Crohn's definitely is a long journey; with its peaks and troughs. I can definitely say that the experience of chronic illness has initiated self growth to a degree which most other teens our age could not comprehend, therefore it has served a purpose in my life. I don't think that anyone should have to go through all of this, but I still think it is important to extract some value out of such experiences...
I am on remicade too at the moment, but we can't get the next infusion atm, so I am just hanging in there for now. Are you having much luck with the liquid diet? I am scheduled to start the enteral diet this week and not very keen. Prednisone tapering is not much fun! Good luck with it Also, I find that when I am changing prednisone doses, it is wise to forewarn all of my friends to ignore any strange, moody or crazy messages to avoid any hurt feelings or lots of explaining
Keep me up to date on how you go with everything.

 

[_aprillll]

cloud, I too find you have to just stay positive because if not then you will never be happy. You can't look at this like the flu, it's here to stay. Some of my friends don't understand that but I see why because sometimes I don't. I hate having this disease but wouldn't change it for it makes me who I am today. I am no longer on remicade because my body started to kill the meds by medicine by making antibodies after the 3rd dose. I have been without meds for 3-4 weeks they say and all my labs are still great. I am so happy that I am doing good for now, I have a great team of doctors. I am no longer on liquid diet but eat lots of fish and not lots of other stuff as tougher meats like hamburger and stuff seem to bother more. Officially of prednisone, thank goodness! LOL thanks for that advice.
How are you doing? Keep me up to date on your progress! Praying everything goes well for you and you get remicade soon.

 

[AlicePamela]

Hey!

I've just turned 18 and after 2 years of pain I've finally been given a diagnosis for crohns. It has given my mind at ease knowing what it is and hopefully can manage the pain. Though I'm finding it difficult to open up and talk to friends and family as I'm struggling with dieting. I was so used to eat whatever I wanted and now its restrictive to what and how much i can eat. I would love to talk to people similar age group and also gain advise from it

Alice

 

[Caitlin84]

I was diagnosed at 17 and missed a lot of school at that time as well. I have always had difficult periods and definitely connected that with my Crohn's. Ten years later I found out I also have endometriosis, so its always been a complicated issue for me. I have taken birth control for years though, simply so I could predict my Crohn's symptoms when they time with my periods. I take Lo-ovral now, but really liked the Neuva ring for lighter periods. Good luck!